Partial molar and molar pregnancy support thread - all welcome!

(506 Posts)
MrsJohnDeere Wed 28-Nov-12 11:06:13

I thought I would start this thread as a place where anyone who is going this or has gone through this in the past could share experiences, vent about life, etc.

After a MMC at 12 weeks and an ERPC a few weeks ago I've just found out the cause was a partial mole. I've been referred to Charing Cross and am waiting to hear back from them to start the monitoring etc.

I know the chances of cancer developing are about 1/100 but I'm still struggling with the 'OMG I'm going to die' feeling at the moment, plus the grief and stress of the miscarriage itself.

I haven't told anyone in RL, other than dh, even friends who know about the miscarriage. I'm worried abut how they'll react and that I'll end up blubbing.

Pinkforever Wed 28-Nov-12 19:55:19

Hi op

I had a molar pregnancy 13 years ago. I was one of the patients who developed choriocarcinoma and had 6 months of chemo. However the GOOD news is I have since gone on to have 3 dcs-yes there were some bumps along the road but its all good.

Please feel free to pm me if you have any questions or just want a natter.

All the best.

MrsJohnDeere Thu 29-Nov-12 13:18:49

Thank you. I will PM you later if that's ok.

I'm really impatient to start testing. I have a feeling that something isn't right, but it may well all be in the mind. I had my ERPC about 6 weeks ago. For the last 3 days I've had horrible cramps and back pain, like bad period pain, and my stomach is swelling up and going hard in the evening, as it did when I was pg. It sounds stupid but it feels like my body is trying to expel something. I'm wondering if this means HCG levels are going up confused.

Pinkforever Thu 29-Nov-12 16:52:27

Feel free to pm me anytime-I am on mn far too much so you will usually catch me! Levels can take a long time to go down and symtoms are very common for a long period after too so dont panic just yet.

artifarti Thu 06-Dec-12 17:33:28

Sorry for your loss. I had a complete molar pregnancy in January 2011 and it was a sad and scarey time. I have since gone on to have DS2 but I will never forget how dark the first half of last year was at times.

I posted on MN at the time as I felt that no-one in RL had a clue what I was going through. My old thread is here old thread - some very kind people (including pink smile) posted about their experiences/suggestions etc. on there so there might be something useful.

Try not to worry about the cancer - especially for a partial molar, the risk of needing chemo is very low (1.5% I seem to remember) so I doubt you'll need it. You will need support, however, especially in a few week's time when everyone else has 'forgotten' that you had a miscarriage.

Have you started testing yet? Take care - and feel free to PM me too if you ever need a shoulder to cry on.

MrsJohnDeere Thu 06-Dec-12 21:24:30

Thank you both.

Had my first blood test today. I was told to call for the results in about a week. I hate not knowing what is going on with my own body because I'm a bit of a control freak.

I've just had my first period since my ERPC (6weeks ago, I think). It wa horrific. Went in a week and I had lots of pain. I am slightly worried that this is because something sinister is going on inside, but only time will tell. I'm almost certainly worrying about nothing.

I actually told some good friends about it this week, which has helped a lot. They keep looking at me with worried faces like I might keel over and die at any moment, but hopefully that will pass!

artifarti Fri 07-Dec-12 09:13:07

It's a good sign that you have had your period as the hormone levels have to drop to a low level to trigger it. My first period after ERPC was tmi like a tsunami but my next results were normal. Fingers crossed for you. x

MrsJohnDeere Fri 07-Dec-12 10:44:49

I hope so. I'm in two minds as to whether or not it actually was a period or just some bleeding and a helluva lot of pain. It felt like my body was trying to expel something, and it didn't look like my periods normally look (probably way, say TMI but it was lots of jelly stuff with blood in rather than just blood). My periods had been pretty erratic/non-existant before I got pg, so I no longer know what to expect!

Things that concern me are my belly still swelling up and going hard in the evenings and my boobs haven't reverted to their normal size.

mistlethrush Fri 07-Dec-12 10:50:21

Another one that ended up with chemo and went on to have a child afterwards here... Mine wasn't picked up at the first ERPC stage which didn't help. Again, don't mind pms.

MrsJohnDeere Fri 07-Dec-12 18:24:42

Can I ask those who had to have chemo, did you have symptoms (other than high hcg etc) so that you knew something was wrong?

After 24 hours all clear the bleeding (that may or may not be a period) has come back today. That would make for a 9 day period confused. I'm wondering whether to go and see the GP, but then they probably know even less than me about partial moles.

lotsofcheese Sat 08-Dec-12 21:45:52

I had a complete molar pregnancy about 15 months ago, it was such a shock to find out about it & I literally had nightmares. The chances of chemo after a complete mole are higher - about 20%. I started urine monitoring 5 weeks after ERCP & my results were negligible right from the beginning 7 stayed that way all through 6 months of monitoring.

I was too scared to TTC during the follow-up, but got pregnant again within a few months after, only to have a MMC at 11.5 weeks. I was gutted.

Decided to have "one last try" and am currently 17 weeks pregnant. I got a scan at 8 weeks to ensure it wasn't a recurrent of molar pregnancy (about 1%) chance.

MrsD would you consider a pregnancy test to put your mind at rest? Although if you've had a period, that's a good sign as your HCG level needs to be low enough for that too happen. Plus it gets rid of more molar tissue so your level comes down too.

It really is a horrible thing to deal with; for me it was a double whammy - a miscarriage is bad enough on it's own, without that on top. However, there are so many ladies who go on to have successful pregnancies after. Hang in there x

mistlethrush Tue 11-Dec-12 09:36:19

MrsJD - I was flooding at completely unpredictable times... I kept on going back to the Drs and was fobbed off with 'it will settle down, give it time' but the last time I went - 3 months after ERPC - somewhat fortuitously I started bleeding just before going in to see the Dr - who happened to be a Locum. Possibly because she was a locum she was doing everything by the book so examined me, saw the scale of the issue and agreed that things weren't right and got a scan set up for first thing the following morning. I could go through a nighttime pad in under 40 mins when I say flooding...

I ended up with a 2nd ERPC the next day - and then, following another bleed on the following Friday, got taken in and not let out and carted off down to a different hospital by ambulance just in case I haemoraged - all rather OTT in my opinion given I had been out walking the dog when I got called in following a telephone discussion with my consultant's Senior Registrar....

MrsJohnDeere Fri 14-Dec-12 10:52:50

Period/bleeding finally stopped after 11 days shock

Just had my first results back. Hcg is 84, which they said was low and a good sign?

mistlethrush Fri 14-Dec-12 21:23:16

Yes, lets hope it carries on dropping.

MrsJohnDeere Mon 17-Dec-12 08:56:02

Feeling a bit worried today. The last three days I've had what seems like morning sickness but obviously can't be because i'm not pg. Been sick 3 times this morning. I'm wondering if this is a rise in hcg levels?hmm

Has anyone else had similar?

JohnBender88 Mon 17-Dec-12 15:52:51

I had a Partial Molar three years ago. From the first urine tests my levels were satisfactory so no follow up treatment was required. By the time I had been told it was a PM my periods had already returned.

I gave birth to our beautiful daughter four weeks ago and it was our first pregnancy since the PM. I'll have to send urine samples away again once I get the follow up sorted with Dundee.

So sorry you had to go through this. Could the sickness be caused by anxiety? It happened to me for quite a few weeks after the loss.

MrsJohnDeere Mon 17-Dec-12 16:02:05

Congratulations on your dd. Glad it all worked out in the end.

Don't think it is anxiety. The only thing I am worried about is feeling sick, which is a bit circular. grin The only time I have felt like this is in the first 12/14 weeks of pregnancy. I guess I'll just have to be patient and see what the next set of blood/urine tests show. I'm having those on Weds but won't get the results until well into Jan because of Christmas and then us going away on holiday. I'm not good at waiting patiently!

MrsJohnDeere Fri 21-Dec-12 15:55:30

Bleeding has started up again today and I'm still being sick each morning. Desperate to know the results of this week's blood tests but may not get them until after Christmas.

Suedeb Fri 21-Dec-12 16:05:15

Hi,
I had a molar pregnancy in April 2008, I had to have two ERCP's and then extended follow up with urine testing with Sheffield from then until the following February. We did have a long wait before TTC again but we now have a healthy 3 year old DS! I sure you will be fine, it seems much worse at first and then settles down. The best thing is that it was picked up! I am a nurse and had only ever heard of it once before and she was a young patient of ours, so as you can imagine i was quite surprised to find out thats what I had too!

MrsJohnDeere Fri 21-Dec-12 16:23:15

Did you feel sick with it (like morning sickness) after the ERPCs?

exexpat Fri 21-Dec-12 16:40:00

MrsJohnDeere - I didn't have sickness, but I did have bleeding at around the 6-week mark after the ERPC. Period like to start but got heavier until I was flooding and passing clots, so I took myself to hospital, where I lost another litre or so of blood before they managed to stop the bleeding. Turns out the mole had started growing back, which was causing the bleeding. I was expecting to start chemo, but they did one more D&C which finally got rid of it, so in the end no chemo. I was in hospital for a week and came out exhausted and anaemic, though.

Have you tried calling the molar pregnancy unit at Charing Cross or wherever you are sending your samples to? They might advise you to go to hospital to get yourself checked out, because nausea and bleeding doesn't sound right.

(oh, and on a more encouraging note, I had follow up for a full year then got pregnant immediately, and DD is now 10)

lotsofcheese Fri 21-Dec-12 17:38:57

Hello MrsJD sorry to hear you're still having bleeding & nausea. To be honest, it doesn't sound right. I think your healthcare team would want to know about these symptoms.

I would definitely phone them. I would also POAS to see if it's still positive.

I hope your results come through soon & you're feeling we'll enough to enjoy Christmas.

MrsJohnDeere Fri 21-Dec-12 18:17:46

I'm going to have to call them on Monday, aren't I. I know you're both right.

I'm worried that they will ask me to go into Charing X. I'm supposed to be going on holiday next week (long haul) so this couldn't come at a worst time!

Suedeb Fri 21-Dec-12 18:32:01

Hi, no I didn't still have the sickness after the ERPC's, they were a relief as I felt hideous before them!
You should ring charing cross, always better to be on the safe side. Sheffield were always lovely if I needed to contact them. Could try over the weekend. Must be someone there as they have in patients having treatment. Worth a try?

exexpat Fri 21-Dec-12 18:47:06

You really need to call the hospital, if you're planning to fly, or even go to A&E if the bleeding continues over the weekend. You do not want the kind of haemorrhaging I had to get going on a plane, or indeed while in a foreign country.

Have you told your travel insurers about the molar pregnancy? Because if you suddenly develop complications while overseas they could easily say it is a pre-existing condition you should have told them about (or should have got medical clearance to travel) and refuse to pay, which could leave you with thousands of pounds of medical bills. But if you have to cancel or postpone now for medical reasons, you should be covered.

Sorry to sound alarmist. We were due to fly long-haul a couple of weeks after my molar pregnancy was diagnosed, but the doctor advised us to cancel. In fact my complications & heavy bleeding did not crop up until after we would have been home anyway, but I really would not have wanted to deal with all that while on holiday. We postponed the holiday until about four months later when I was definitely on the road to recovery and feeling much better.

megly Fri 21-Dec-12 19:00:47

I had a partial molar in June this year, as it wasn't diagnosed for many months, I ended up pregnant again so had to wait to be tested until that pregnancy ended (failed). I did though have 2 erpc's after the first pregnancy which we now can see was due to the PMP. Once the second pregnancy ended my levels fell in a couple of weeks to a similar level to yours. Then after a heavy period back right down. So the hormones falling is very good and that level is low yes. And as I said, my first 'period' was very heavy and definitely felt like my body was still getting rid of the residue which was a good thing. The pregnancy symptoms also continued for some weeks and I did think that stress about it all made them worse. So it is possible that you are quite fine. But you Definitely should call the hospital and certainly shouldn't fly till all is clear. Exexpat is totally right. I was meant to do a long haul flight during the second miscarriage and the doctors said don't. Are you at Charing x? Results take 24 hours there not weeks, I'm quite surprised about your wait?

Huge sympathies. Its completely hideous the stress and pain of molar pregnancies. And so many doctors seem not to understand at all.

MrsJohnDeere Fri 21-Dec-12 22:35:20

Arrrgghhh! Don't know what to do for the best.

No, haven't told my travel insurer. The bleeding is very light but has been going on (and off) for about 3 weeks.

I am at Charing Cross.

The reason my results could take so long is that my local hospital is rubbish. I have the bloods done at my GPs. They semd the. To the local (crap) hospital who centrifuge them, or whatever it is called, amd send them on. They took over a week to send the first lot to Charing Cross. On the same time frame the second lot would be due to arrive on Christmas Day or Boxing Day but obv because of the bank holidays they then wouldn't get them until Thursday at best (by which time I would be on holiday).

Why is life so complicated ?!

MrsJohnDeere Fri 21-Dec-12 22:36:04

Sorry lots of typos. Too much wine

exexpat Fri 21-Dec-12 22:50:50

OK, I think you definitely need to speak to both Charing X and your travel insurers ASAP - try calling tomorrow, don't wait till Monday. At the moment you are leaving yourself wide open to massive medical bills if anything goes wrong while you're away.

I have to say that in your position I would be starting to seriously consider cancelling the holiday. You may be fine, but you may not, and it's a big risk to take.

exexpat Fri 21-Dec-12 22:55:25

Also, I'd second the suggestion to take a pregnancy test. If your levels have gone down since your last blood tests, you should be getting close to the 'not pregnant' level, though still may register a faint positive, but if you get a strong positive I would guess it is an indication that your levels may be rising again.

MrsJohnDeere Fri 21-Dec-12 22:59:10

It's so hard to know what to do for the best. Dh and the Dcs are really looking forward to it. I want to help make it a great holiday for them after several horrible months where they've not had the time and attention they deserve.

Going to sleep on it and hope it all makes more sense tomorrow.

exexpat Fri 21-Dec-12 23:37:46

I can understand your reluctance to disrupt things for the rest of the family, but it's not going to be a very relaxing holiday if you are bleeding and vomiting, and anxious about the whole thing, let alone if things take a turn for the worse and you end up in hospital (and have to pay for the privilege). Has your DH read this thread, or have you spoken to him about the insurance issue?

lotsofcheese Sat 22-Dec-12 20:12:09

Hi MrsJD how are you today?

I agree with the advice exexpat has given you. As someone who has had 2 trips abroad ruined by miscarriages, I know how tough it is. I had to cancel my 40th birthday trip to NYC earlier this year, as I had a mmc & required surgery. It was awful.

But I'd also say it's far worse to be caught out abroad, in hospital, not covered by insurance.

I really hope it works out & you're able to get away xxxx

MrsJohnDeere Sat 22-Dec-12 21:45:15

Bleeding has stopped again confused. Had the nausea again today but, as on the other days, it is only in the mornings that it is a problem.

Going to phone Charing X on Monday. There's an outside chance that they might have my results ready then which will he,l inform my decision about what to do.

MrsJohnDeere Mon 24-Dec-12 11:38:20

Got my results back. HCg unchanged, which surprised me. Don't understand why I feel more nauseous now than 2 weeks ago. confused

They seem ok about me travelling. There aren't enough results yet to go on to say any further or immediate action/medical attention is needed.

exexpat Mon 24-Dec-12 13:13:35

Well, that sounds like good news. Odd about the nausea, though. And I think it's still a good idea to inform your travel insurer, just so they can't say you should have told them about it if things do go wrong. Hope you have a good Christmas!

lotsofcheese Mon 24-Dec-12 15:39:40

Glad to hear that MrsJD - enjoy your holiday - but do as expat advises & inform your insurance company - just in case!! Xxx

MrsJohnDeere Wed 16-Jan-13 16:34:18

Just thought I would post an update if only to help clarify my thoughts. If anyone has any words of wisdom they would be much appreciated though. smile

Three months on from my ERPC my HCG levels have come down to 35. BUT I still have 'morning sickness' - was properly sick this morning - which apparently shouldn't happen once levels go below 50.

I had spotting on and off all through December but have been bleeding a lot for the last couple of weeks. It is not a period just random bleeding. CHX seem to think that it is a good thing - my body expelling molar tissue. But it shouldn't be going on this long confused. Also it has started to get really smelly blush and I have abdo pain on and off, sometimes quite severe.

CHX reckon it is an infection. Need to have swabs done and get anti-biotics if only the dragon receptionist at the GPs would let me actually have an appointment.

MrsJohnDeere Wed 16-Jan-13 16:36:46

On the plus side CHX said that I should rest as much as possible as exercise, lifting, running around makes the bleeding worse. Going to milk that for all it's worth with dh!

jenjens2626 Sat 26-Jan-13 02:21:47

Hello all. I am new to this and wanting to ask a few questions on my sisters behalf. She had a complete molar approx 6 weeks ago.She had a d and c and although tired, seemed to be doing well. However, over the last four weeks she has been intermittently bleeding (fairly heavily), is totally exhausted and has been experiencing excruciating pain in her lower abdomen. She has now sent off two lots of blood and urine to Charing cross and good news is that her levels seem to be going down slightly although I'm not sure of exact figures. She was in that much pain today that she could barely move so after visiting the gp, she was sent to our local a and e where she wasn't seen by a doctor for nearly 8 hours, she eventually had to leave due to snow and although pain subsided a little it was still present. she was taken to hospital two weeks ago for same pains. That time she was scanned and told there was a mass in her uterus, likely to be a blood clot and was sent home. Our local hospital has been so unhelpful and it is so frustrating. I'm sorry for long message but would like to know your thoughts as we are all obviously worried about her. I'm thinking of rining Charing cross tomorrow but worried I am expecting things to be done too soon. Thank you for reading and any advice given in advance.

MrsJohnDeere Sat 26-Jan-13 09:55:18

Posting quickly on phone but didnt want to leave you unanswered.

Definitely ring Charing Cross, they are great at giving advice over the phone ime. I haven't tried at weekends, but I assume they must have someone there to look after inpatients? I've found them to be really helpful unlike my GP.

I too had episodes of excruciating pain (was on the verge of going to A&E). CHX told me that - in my case - they thought the pain was a good thing, the body's way of expelling residual molar tissue. Obviously this could be very different in your sister's case. My pain came later though - think it was 10 weeks after the op (had mine mid Oct).

jenjens2626 Sat 26-Jan-13 12:31:48

Mrs J Deere, thank you for the reply. I am going to ring char x today and see what they day. Will let you know outcome.

MrsJohnDeere Sat 26-Jan-13 18:46:56

How did you get on? Is your sister any better?

jenjens2626 Sun 27-Jan-13 02:32:03

I called the hospital and spoke to the on call oncologist. He said to ring back Monday, which I will do. He seems to think that its nothing to worry about as she is not bleeding at this time. Still not happy though so will definitely call back monday. Will keep you updated. Just feel very frustrated at the moment.

MrsJohnDeere Sun 27-Jan-13 07:10:12

Yes, that is frustrating. Fwiw, I've phoned a few times now and always seems to speak to the same lady. She seems very clued up about the things and takes a lot of time to answer questions and asks quite a few herself. Hopefully you can talk to her on Monday.

Could she call the hospital/doctor who did the ERPC - and presumably diagnosed the molar pregnancy - for advice. Technically she would still be under their care until she gets the all clear from CHX, I think.

Is she still in a lot of pain, or does it come and go? Maybe she will pass the clots at some point and then the pain will die down.

Ashoething Wed 30-Jan-13 13:15:27

Hi
I was on this thread earlier under a different name. I think any unexplained bleeding following a molar pregnancy MUST be followed up. You really need to push though as a lot of doctors have simply never dealt with a case. I was passed from pillar to post a lot in the first couple of months after I had mine many moons ago and was pretty much kept in the dark until I was told I was being carted off for chemo!
All the best and feel feel to pm me if you need any help.

nerual Wed 30-Jan-13 13:17:20

Hi everyone,
I had a mmc and erpc on the 13 Dec. Our doctor told us there was no minimum time to wait until we could start ttc again (just when emotionally ready), so once my pg tests went negative (around 10 days after erpc) we started trying again, and got BFP a couple of weeks later, in early Jan. About a week after I got BFP, the hospital rings me to let me know I had a partial molar pg!! I had never heard of it before, and we definitely wouldn't have ttc had I known that my mmc might have been this.
They did a scan to confirm that I was pregnant, which I am, but now I am SO worried that something is going to go wrong because I conceived so soon after the molar.
My doctor did call CX hospital, and they said that if my pg tests were negative then it's pretty certain that there was nothing left after erpc, and that this pg will be fine, but still, it's all very worrying.
Does anyone else have any experiences with conceiving so soon after partial mole/erpc??

MrsJohnDeere Wed 30-Jan-13 13:39:06

Nerual - what a worry for you. I would phone CHX yourself and see what they say. Have you started testing (bloods/urine etc) yet?

jenjens - how are things with your sister.

An update on me: saw my consultant a few days ago. I've been bleeding non stop now for about 8 weeks (not a period though). He confirmed what CHX had said, that the bleeding is probably a good thing. The body's way of expelling all residual molar tissue, kind of rebooting itself! I have to go back in 6 weeks. If I'm still bleeding then he'll do an ultrasound and then, if necessary, another ERPC. Typically, the bleeding eased off on the day I saw him, but is now back with avengeance!

nerual Wed 30-Jan-13 13:50:57

Hey MrsJohn, it is worrying. Re testing, CHX just want me to start testing after this pg is over, one way or another. They can't test me now while I am pg, as HCG from the pregnancy masks any HCG being generated by moles.

I can't believe you've been bleeding for 8 weeks, that is awful. I guess one of the reasons why we started ttc again was that I had almost no bleeding after erpc and no pain, didn't even need the lovely painkillers they discharged me with (saving them for some later occasion!). I felt completely fine. I realise that in this respect I am very lucky.

MrsJohnDeere Wed 30-Jan-13 13:59:54

I was told no sex until after a 6 week follow up, and at that appointment I was told about the molar thing, so it was a bit of a non-issue for me. But it is true, nausea, pain, bleeding aren't really conducive to sex.

nerual Wed 30-Jan-13 14:11:52

I can't believe I we weren't told to wait, if there was even a chance of this happening. We even specifically asked the question. Perhaps when the consultant said 'when you feel ready' he didn't imagine we would feel ready in 2 weeks time... sad
Oh well... I have another scan next Friday, I guess we'll see what's going on then...

MrsJohnDeere Wed 30-Jan-13 15:40:59

The chances of a molar/partial molar pregnancy are so small that I guess it isn't the norm to suggest waiting.

It could be that my consultant had a hunch that I mad a mole when he did the ERPC but didn't want to say anything until he'd had it confirmed? He's a bit of of an expert in the field, I think. Also, I think my age (40+) was a factor in saying no sex. At the scan where he spotted the missed miscarriage I remember him saying that if I got pg on the next cycle I had a 70% chance of miscarriage merely because of my age.

habbibu Thu 31-Jan-13 15:14:26

Sorry to hear you're going through this, MrsJD. I am surprised you haven't been scanned again (or did I miss that)? I had big gushy bleeds a couple of times after my first EPRC (from which a partial mole was diagnosed) - told Dundee, they had me in and scanned again after the 2nd bleed, and found molar tissue regrowing on the uterus, so I had a 2nd ERPC, and follow-up scan. But I know that CHX is a big centre of expertise too, so wouldn't want to second-guess them either!

MrsJohnDeere Thu 31-Jan-13 18:58:22

Tbh, I'm surprised I haven't had a second scan yet either. To me it would make sense to do them as a routine thing after an ERPC for a molar pregnancy. CHX seem to focus just on hcg, so if that's ok everything else must be fine.

Will have one if I'm still bleeding 6 weeks from now (had a letter to that effect today). It's not gushing though and there are no clots now so I guess it doesn't seem that important.

MrsJohnDeere Fri 01-Feb-13 10:38:14

Feck.

CHX have phoned. Levels have rocketed back up. They want me to do one more lots of bloods and go in once the results come back.

nerual Fri 01-Feb-13 13:53:05

oh no mesS, sorry to hear that. I have started bleeding too, mbe miscarrying... sad

nerual Fri 01-Feb-13 13:54:05

sorry that was supposed to say 'sorry mrsD'...stupid phone.

MrsJohnDeere Fri 01-Feb-13 14:20:40

Oh crikey Nerual. So sorry. I'll keep everything crossed for you that it isn't another miscarriage. Can you go and get a scan at your EPU? What a worry for you.

nerual Fri 01-Feb-13 14:24:32

I called them and they said just wait and see, the bleeding seems to have mostly stopped (but I still have mild cramps),and I have a scan with them anyway on Friday. they said if it gets really heavy then go to a&e...

nattnothing Fri 01-Feb-13 17:42:36

I have found this thread very useful and I'm so sorry to hear of the sad stories but will keep my fingers crossed that things look up for you all soon.

I will share my story also- I had an ERPC at 13 weeks for mmc- that was exactly 11 weeks ago today. I found out about 2 weeks after that re: partial molar pregnancy and was devastated as this was our first pregnancy (i'm 35). I'm being monitored by Charing Cross every two weeks. I have had continual heavy spotting with intermittent bleeding since the ERPC 11 weeks ago and this week the bleeding has got really heavy with back pain and abdo pain (mostly in the evenings) - the pain is quite severe and feels like my body is trying to get rid of stuff. I have been to my local hospital twice who have scanned me once and just check my HcG levels there last weekend and felt it didnt warrant a scan - I suppose Im really concerned re: continued bleeding but all charing cross and the hospital say is it's maybe a good thing and your levels are dropping.

My levels to date have been as follows post ERPC
3wks: 2897
5wks: 1199
7 wks: 384
9 wks: 297
10 wks: 203 (local hosp) due to pain and fresh blood)

Test due this Monday for more blood and very nervous as either there should be a massive drop due to the recent blood loss or worried they may have increased due to pain and bleeding. Its so hard to know what to think, has anyone else experienced a long time for levels to drop with continued heavy spotting and fresh bleeding at around 10 wks? I'm not sure whether it is a period as my levels are still around 200?

nerual Sat 02-Feb-13 16:35:37

Hi Natt, just wanted to say sorry for your loss & continued pain & bleeding, sounds a bit like what MrsD is experiencing. My story is a little different but I'm not sure what is more 'normal', lots of bleeding/pain or nothing at all, like I had. I haven't had the experience of having my levels checked yet but I think mine fell really fast, as I had a negative pg test a couple of weeks after my erpc (hence my now possibly soon ending pregnancy!). But on the many forums I have been perusing, it does seem like a slower decline like you are experiencing seems more common.

Good luck for your test on monday and let us know how it goes...

MrsJohnDeere Sat 02-Feb-13 19:40:47

Nattnothing - your experience sounds very similar to mine. My levels weren't tested until around 8 weeks after the ERPC and they were lower than yours (80something then). Mine stayed at this level for a month, fell at the start of Jan to 30ish, and have just risen to 137. I too have had severe abdo pain on and off since early Jan (12 weeks after ERPC).

I was told that I wouldn't get a period until hcg dropped below 25.

MrsJohnDeere Sat 02-Feb-13 19:41:34

Nerual - how are you today?

nattnothing Sat 02-Feb-13 21:09:31

Neural I hope you are doing ok and I hope your scan is positive as you must be worried sick.

Mrs JD - you situation does sound very similar to mine - its awful not kowing whether the pain and bleeding is a good sign or not - i think I have tortured myself this last week. The pain in the evenings is bad and lasts for a few hours - feels like my body is trying to get rid of stuff, just hoping my next bloods are still falling but im getting so impatient as this will be almost 12 weeks. Whole saga seems never ending! Has Charing Cross been in touch with you re: your rise. Hoping it will just be a temporary hitch and maybe it will fall again without intervention - are you still having bleeding and pain?

nattnothing Sat 02-Feb-13 21:16:21

Mrs JD - did charing tell you that you cant have a period until your numbers are 25? If so then at least i know that all this pain etc is not a period....... which does worry me a lot!

MrsJohnDeere Sat 02-Feb-13 21:48:22

Yes, Charing Cross said that to me a couple of days ago. Gynae consultant, who last saw me when levels were 37 and thought to be falling, said to expect a period within the next 6 weeks.

nerual Sun 03-Feb-13 08:21:03

am ok today. basically, on Thursday evening I had a sudden gush of red blood, then nothing else really other than some small brownish spots. also have very mild lower abdo / back pain, which feels a bit like really mild period pain. I have no idea how I'm going to make it to Friday with my danit intact... am pretty much preparing myself for the worst though...sad

nerual Sun 03-Feb-13 08:22:34

aargh. that was supposed to say 'not sure how I'm going to make it to Friday with my sanity intact'! stupid phone.

nattnothing Sun 03-Feb-13 10:45:55

Good morning nerual - hang in there! Maybe go to your EPU to get your HcG levels checked and ask for a scan - I know you have one on Friday but if it was me I definitely couldn't wait as I'd be a wreck! I really hope that everything will be ok as lots of people bleed during the early weeks of pregnancy but with the history of partial molar be sure and get checked out asap. Thinking about you.....

Mrs JD thanks for letting me know re: levels and first period - I guess I cant help thinking this disease has started causing bleeding and pain. I feel like it hard to get any answers as Charing Cross just focus on the levels and dont really take the other symptoms on board - the local hospital are just directed by Charing Cross! That's why is so good to have people to chat to. I hope you are doing ok?

MrsJohnDeere Sun 03-Feb-13 19:18:41

Nerual - keeping everything crossed for you. A miracle may still be possible. I'd be going out of my mind waiting until Friday.

Nattnothing - I find Charing Cross a bit too 'black and white' about levels. That is all they seem to be interested in but you know when something feels wrong inside.

Thoroughly fed up with it all this evening. Abdo pain has returned and the bleeding is not letting up. I woke up in a cold sweat last night fretting about having to go the Charing Cross - more the practical aspect/logistics than the actual treatment.

nattnothing Sun 03-Feb-13 21:07:10

Hi MrsJD when do you go the Charing Cross, do you have to travel far? At least when you go there they will sort things for you - I know what you mean it all the upheaval and hassel

I'm just back from A&E this evening as my abdo pain got so severe and I couldnt get the bleeding to stop, plus passed really large clots. They give me meds to control the bleeding and did an internal, where they saw more large clots! Need to go to GP tomorrow and give her the info so she can make an urgent referral to gynae to get seen again this week. Feel so weak and fed up also! A&E did an HcG and levels have dropped to 123 (they were 203 last Sunday) - so a glimmer of hope I suppose but I wont settle until they are negative - hate this waiting!

Hang in there and let me know how things go ......

Nerual - how are you this evening?

MrsJohnDeere Sun 03-Feb-13 22:04:15

How scary. Hope you are ok. Good that the levels have dropped though - a ray of hope.

It probably takes about 2 hours for me to get to CHX, at a rough guess. I am jinxed with trains, so maybe more.

nerual Mon 04-Feb-13 06:04:37

Gosh Natt, all that pain, bleeding and passing large clots so long after erpc...that must be dreadful for you. Glad you are being referred to a gynae this week. Do you have to go to work? I hope not...
I'm actually feeling a fair bit better today, might venture into town to work. I basically didn't leave the house for fri, sat or sunday, but I don't think I can get away with 'working from home' for another day. Am toying with the idea of getting a private scan, just checked and there is somewhere quite near work that I can go. Might call today and see when I can get an appt, but if only on Thursday or something then may as well wait till friday...

artifarti Mon 04-Feb-13 14:52:12

Just spotted this thread again and as someone who had a CMP in 2011, just wanted to hold your hands a bit.

MrsJD - sorry that this is still going on for you and really hope Charing X can sort you out. I live in London and have been to the hospital/dept so if you ever needed hand-holding, let me know.

nerual - sorry that you are bleeding in this pregnancy. I got pg 5 months into my follow-up which was nerve-wracking. I had a lot of brown bleeding, exactly like with the CMP, which was awful but fortunately everything turned out well in the end. Hopefully that will be the case for you too. Fingers crossed.

natt - that's great that your levels have fallen but horrid that you are in pain etc. Hope all is well with you soon.

MrsJohnDeere Mon 04-Feb-13 16:39:51

Could do with some virtual hand-holding today. I've spent far too long today looking on that molar pregnancy forum about what chemo involves, what it's like to stay at CHX, etc and feel totally freaked out. Sounds awful (but then cancer wouldn't be that great either).

nerual Mon 04-Feb-13 19:24:47

Sorry you have had a tough day MrsD sad
It's so hard not to get freaked out with all the stuff about MP that is online. The one good thing is that it all the documentation says that it is very easily cured with the chemo, if it comes to that. I can't imagine what it's like to have chemo though, it can be anything other than horrible surely. A lot of people seem to have quite positive stuff to say about charingX hospital though, I think you are well taken care of there if you are admitted as an inpatient.
Have you looked at http://www.molarpregnancy.co.uk/forum2/ ? You have to register to see the forums but there seems to be a lot of virtual support going on there too...
Thinking of you...

nerual Mon 04-Feb-13 20:01:23

Forgot to mention, I went and had a private scan today, which was reassuring and worrying in equal measures...although I have heartbeat, I also have an 'area of bleeding' which may or may not become something more serious...will just have to wait and see.

nattnothing Tue 05-Feb-13 11:19:25

Nerual - I'm so glad that you seen a heartbeat on the scan that's so encouraging, I really hope and pray that the area of bleeding is just something trivial and will pass in time. It means you now have a scan that you can compare with your next scan on Friday and hopefully that will show an improvement in the bleeding area - Ill be thinking about you and keeping everything crossed that the next scan is even more positive.

MrsJD - I fully understand how anxious you must be about treatment - I would be the same but as my husband often says sometimes the stuff on line is not always the most positive and many people tend not to go onto forums unless things have not been great, so there will be lots and lots of really positive things not even online. I agree with the others, anything about CharingX is always a really positive experience and at least this will speed up you route to Zero and you can be finally re-assured that you will have the best treatment until you get there! I hope you will have little side effects and breeze through the treatment quickly, I think you will as you numbers are still quite low when compared to other who need treatment - when do you go to charingX - thinking about you ...... stay strong smile

I went to GP who was very good and she is going to chase up urgent gynae appointment with local hospital and hopefully get back to me today - I have had to take some time off work due to pain etc but hoping to get soon asap as I need some answers to how my body is reacting 3 months post D+C. I also spoke to CharingX and they were helpful in directing me what to tell GP and what to request from local hospital. Hoping that things look up for us all soon and keep in touch ......

MrsJohnDeere Tue 05-Feb-13 15:51:06

Nerual - great news about the heartbeat. I know you're not out of the woods yet, but it gives some hope, doesn't it. I'll be keeping everything crossed for you between now and Friday.

Nattnothing - yay for your GP. Makes a huge difference if you have a good one on your side. Hope the appointment comes through soon.

Thank you both for your words of encouragement and positive thinking. It really helps. I've got blood tests tomorrow. Desperate to know the results, but scared at the same time. I feel really awful today - fever, nausea. Probably something totally unrelated but it's hard not to think the worst. I feel very pregnant today - got the yucky metallic taste in my mouth, can't drink coffee, and boobs hurt - but I absolutely cannot be pg, so am panicking a bit. Could be a surge of hcg?????

nerual Tue 05-Feb-13 16:38:45

Will you have to wait long after the test to get your result MrsD?

MrsJohnDeere Tue 05-Feb-13 16:46:32

Normally it's a week. As this one is so crucial I'm hoping they might do it quicker?

nerual Tue 05-Feb-13 17:50:22

I hope so too. A week is a loooong time... sad

nattnothing Tue 05-Feb-13 21:59:13

MrsJD - a week is a long time to wait. I go to the local hospital (Gynae outpatients) get the blood draw done first thing in morn, then I walk it and the kit to the hospital lab and drop it in for centrifuging - it means the lab posts it in the first post and charing cross get it the next day - generally I get blood draw on Monday and get results Tues/Wed. If I went to GP, then it would prob take a week like yours and this would wreck my nerves.

If you feel really unwell - go to A&E and ask them to do an HcG and they could have the results for you in a few hours - that's what I have done the last two sunday's and it means I know the result before Charing Cross - just a passing thought if you're really stressed out.... However, I have found that other than the blood tests the local hospital have no clue about molar pregnancy which is disappointing as that's why it good to be able to chat to others going through the same thing.

Try not to panic about the symptoms as I have a chest infection and of course, was thinking I had metastases in my lungs before I got the HcG result!! I think it is only natural to think the worst at times so try not to torture yourself too much but I know its so tempting deliberate over and over in your head!

I'm still waiting on urgent gynae appoint - well probably a week or two off I imagine. I wrote a letter of complaint today to local hospital re: lack of follow up care for molar pregnancy complications etc etc made me feel a bit better, even though I work for the health service! This will be the first time I've been off sick in 3-4 years and it annoys me that I still have no answers and medics here know so little - at least Charing Cross will have all the answers for you so try and rest assured on that front..... I feel a bit better today less pain and bleeding but still there and I'm afraid to go to work in case I have a big bleed or have to leave a meeting etc due to pain...

Hang in there MrsJD, I will be thinking about you over the next few days

How are you feeling nerual?

MrsJohnDeere Wed 06-Feb-13 09:16:43

Got a GP appointment this morning. Had a temp of 39.9 last night, although it has come down a little now. Probably unrelated but it's hard not to think the worst!

nerual Wed 06-Feb-13 10:22:25

Sorry to hear about fever MrsD, let us know how the doc appt goes. Could just be flu at this time of year I guess.

i am feeling less crampy today, hopefully that is a good sign. Just a couple more days until scan now, really glad I had one on Monday as I think the waiting would have made me so anxious.

MrsJohnDeere Wed 06-Feb-13 14:02:29

Got anti-biotics. Doc thinks its an infection rather than flu.

Good that you've had no more cramping or bleeding.

Ashoething Wed 06-Feb-13 18:25:30

Hi ladies.i am still here and happy to chat about my experiences of chemo and cx.i hope your results are good mrsjohn but please try and remember that if the worst comes to the worst you will get better.you will come through this like i have.all the best to all on this thread.

nattnothing Wed 06-Feb-13 19:28:59

Ashoething so glad you have come through the treatment and are so positive, that's great to hear for us ladies not quite there and gives us all hope.

Nerual so glad you are feeling a bit better and I really hope that means that your scan will go well on Friday.

Mrs JD hopefully you will feel better soon when the antibiotics get to work! Hope you are feeling a bit more upbeat about things?

Much the same here with me, just been passing more clots and have more heavy bleeding and severe abdo pain this evening- now considering getting a private consultation, think I will follow this up tomorrow as I just know that all this isnt right 3 months post D&C - I just need to know the reason for all these large clots and bleeding. Mrs JD are you still having these symptoms?

MrsJohnDeere Wed 06-Feb-13 20:10:16

Still bleeding but not large clots. Sort of strings of blood inside jelly (lovely!). Abdo pain flares up once in a while but mostly I don't have it.

Temp still sky high. Hope ABs take effect soon. On the plus side it's a great way to lose some weight; barely eaten in 3 days.

nerual Thu 07-Feb-13 16:12:13

how's your fever today mrsd, feeling any better?

nattnothing Thu 07-Feb-13 16:15:04

Mrs JD we will both be skinny minnies in no time as it takes a lot to put me off food but this whole saga has managed it. How are you feeling today - any news from Charing Cross or result on your latest bloods?

I phoned hospital today and they told me 6 weeks to be seen! To cut it all short Charing Cross phoned them and funny enough I have an appoint tomorrow morning with consultant who has also received my complaint! They are now freaking out I guess and telling me I was never discharged and that consultant new nothing about my A&E attendances etc etc. Thank goodness for Charing Cross and my GP but it's awful how quickly they try to lie and cover themselves! Anyways there may be a change that I have aterial malformation or AVM which can be common after molar pregnancy (main symptom is ongoing bleeding, however condition is again very rare) and can actually be life threatening, hope not! My consultant has to phone Charing Cross after he has seen and examined me and I also have to phone them. If I have AVM I will make sure that it is logged as a Serious Adverse Incident within the Trust as this has been appauling! Anyways I will keep you posted and let you know if Iam the person who always develops the rarely rare complications! Mrs JD there is a chance I might see you at Charing Cross!

Nerual - really hoping your scan tomorrow goes well, please let us know how you get on - will be thinking about you.....

MrsJohnDeere Thu 07-Feb-13 17:32:45

Still got a fever and still feel horrible. Another exciting new development today - I passed a lump of tissue (or something) . About the size of a blueberry and shrivelled. Dh tells me I should have kept it to show someone, but I didn't think to. No new from anyone but it is too soon.

Nattnothing - great news that you have an appointment so quickly, but ridiculous that you had to go through all that to get it. Good luck with it. I hadn't heard of AVM. Will google now!

Nerual - good luck for tomorrow. Will be thinking of you too. Hope it is good news.

Ashoething Thu 07-Feb-13 19:40:39

mrsjohndeere-molar tissue is often described as being a bit like grapes-does that sound like what you passed? I think it is probably a good sign though that your body is trying to get rid of it.

neural-the thing is so many doctors-even experienced ones have never dealt with a molar pregnancy. I was told very matter of factly by one junior gyne doctor that if I had any questions she would have to go and fetch a text book!

When I fell pregnant 6 months after finishing chemo-very much against the advice cx give!-I had to explain over and over again about the mole even though I was at the same hospital that had originally diagnosed it and had also liased with cx over my treatment! I also had to fight to have extra scans as they were quite blase over my fear of having another mole!

Keep pushing for the treatment you deserve-put stuff in writing. All the best.

MrsJohnDeere Sat 09-Feb-13 08:41:38

Nerual, nattnothing - hope you are both ok??

nerual Sat 09-Feb-13 17:15:37

Yes ok thanks... had scan on Friday was pretty much the same as monday. Managed to panic myself as I expected it to have grown more than it did in 4 days, but I'm just telling myself measurements can't be that exact at 6/7 weeks. Still area of bleed, and gestation sac is an irregular shape, which can be a bad sign, but still a heartbeat so we are still in business...

How are you today?

MrsJohnDeere Sat 09-Feb-13 18:46:59

Good news that there is a heartbeat. smile

What happens next? When will you have another scan?

I feel a little bit better, thank you. Fever has gone but I can't do anything. No energy at all. Bleeding has got much heavier.

nerual Sat 09-Feb-13 19:26:31

The EPU said that they will now send my notes over to my GP, who should get them in about a week, then the GP need to register me as preg and refer me to my hospital of choice as per a normal pregnancy. Once my GP has the notes, I will go in and see them and try and get them to get me another early scan (probably around 8/9 week mark). If I can't get it easily then I'll just get another private scan in a couple of weeks.

Glad to hear you are feeling better although really not good that bleeding heavier. Do you get the results of your blood test soon, Monday or so?

nattnothing Sat 09-Feb-13 20:50:46

Hi folks, I havent written anything but have been continuously checking re: news of nerual and glad that this scan also shows a heartbeart, which is great for such an early scan. It can be so hard to get the measurements right so early on, so dont worry to much as even a tiny tiny movement from the scanner can change things dramatically on the early scans - good news so far though which is great! Did they say what could be causing the area of bleeding? Are feeling a bit more positive nerual?

Mrs JD, sorry to hear that your bleeding has got heavier, you may need to get you bloods done as if you are anaemic, this will leave you feeling totally drained! Hopefully it will settle soon and you should hear about your levels early next week, just rest and look after yourself for the next wee while... Is the bleeding really heavy?

Had my appointment with the gyane consultant at local hospital yesterday, it was a bit uncomfortable as he was obviously being overly nice due to the complaint and the fact Charing Cross had been chasing him - had scan, inflamatory makers, hcg and swaps done. He will discuss the results with Charing Cross on Monday/Tues and let me know the outcome and the way forward - feeling a little bit nervous as scan showed thickening of uterus linning so not sure what is causing this..... Anyways at least I'm being more appropriately monitored which is re-assuring - so will have to wait and see! Hopefully levels will still be falling.

Will keep you posted as soon as I hear more and hoping that Mrs JD some positive news next week re: levels etc.

MrsJohnDeere Sat 09-Feb-13 22:38:50

Glad it went ok yesterday and you don't have to wait long for the results.
What might thickening of the uterus lining mean, in practice? Is that a mole thing or something else?

Yes, bleeding now heavy. Bit of a worry. You know when you phone CHX and they say not to worry abkut bleeding so long as you aren't having to change a towel every hour, well it's heading that way. confused I don't think there's much I can do before Monday, so I just have to watch and worry!

nattnothing Sun 10-Feb-13 11:26:47

Hi mrs JD - they didnt commit to saying what the scan meant, think they need the results of hcg and swap etc as it could mean a number of things and they want to discuss with Chx.

Mrs JD if you are going thru more than x1 pad an hour or having gush like bleeding call out of hours GP or go to A&E - they may be able to give you tablets to stop the bleeding and/or scan you to see what is going on and they can do a HcG level and you would find out the result of that today (if a&E) - please consider these options - if you want leave you email and I will email you my phone number if you want to chat, feel free. I hope you are bit better this morning, let us know if you are ok? smile

MrsJohnDeere Sun 10-Feb-13 12:28:11

A little bit better. Temp is back to normal but still no energy at all. I've got a really busy week ahead and need to get better now!

Bleeding still heavy but not gushing. It is irritating more than anything. I'm going to hold on to speak to CHX tomorrow and see what they say. OOH service here is useless. I can't face A&E, and think it will complicate things (I will go there if I start haemorrhaging or am in pain.

nattnothing Sun 10-Feb-13 12:45:05

Hi Mrs JD - glad your temp is down maybe it has been the infection as well that has left you with no energy but glad its down now - hopefully you will start to get better.

I know what you mean - waiting in A&E is an nightmare and quite often they are not knowledgeable about molar pregnancy and any complications. ChX will be able to advice you tomorrow but may want you to get a scan - are you still known to your local gynae service? Here's hoping that things will settle a bit for your busy week ahead - if I can help in anyway just let me know smile

I'm feeling a bit better today - less pain but still bleeding but thankfully much less clots etc which is very much welcomed but also feel like all the energy has been sucked out of me.

MrsJohnDeere Sun 10-Feb-13 14:02:00

I've been seeing a gynaecologist privately. He is very clued up about all this, thank goodness. Due to see him again in a few weeks. I could see him earlier but I'm not sure that my health insurance will cover endless appointments.

MrsJohnDeere Mon 11-Feb-13 20:23:04

No results, no news.

Ashoething Tue 12-Feb-13 10:41:14

Have cx not done your bloods then? I will be thinking of you and am here if want a chat. All the best.

MrsJohnDeere Tue 12-Feb-13 14:34:02

Results back. Need chemo. Scared.

artifarti Tue 12-Feb-13 17:38:28

Sorry to hear that MrsJD. Holding your hand. It's not fair and it's not what anyone wants but all will be well. x

Ashoething Tue 12-Feb-13 19:23:40

Have pmd you mrsjd-dont panic. They have caught it and you will be fine.

nerual Tue 12-Feb-13 19:27:28

Oh no MrsJD, I'm really, really sorry to hear that. Sending lots of virtual hugs your way sad

MrsJohnDeere Tue 12-Feb-13 22:08:56

Thanks everyone. I will find out more tomorrow. I'm going to CHX for the patient information session < gulp, scary stuff> and apparently one of the doctors will talk to me about me too.

nattnothing Wed 13-Feb-13 12:53:12

Hi Mrs JD, so sorry to hear that and so disappointed for you. Thinking and praying that the treatment will be short lived and that you fly through it in no time. How are you bearing up today? Hopefully when you go to Chx you will feel more reassured as from what I hear they are excellent....

Lots of virtual hugs and keep us posted on how you're doing - thinking about you

MrsJohnDeere Wed 13-Feb-13 13:29:13

I'm ok. Coming round to it all. RL friends are being fantastic, one in particular. I feel very lucky.

I'm not at CHX today after all. Very frustrating, but all the trains are suspended in this part of the world, so I just couldn't get there. I had a great long list of questions to ask and was all psyched up for it. They're going to phone later with a date to in, probably end of next week.

nattnothing Wed 13-Feb-13 15:22:42

Ah that's so frustrating when you all set to get the info that would help reassure you, nightmare about the trains that's awful hopefully they will be up and running again soon but hang in there at least you will get sorted soon - hopefully your numbers havent risen too much and you wont need much intervention to get to that beloved zero number!

My levels were 77 today (12 weeks post D&C) - painfully slow decline and hoping they continue to fall - still having intermittent bleeding daily but Chx say it could be a period - hard to differentiate though when I've had some level of bleeding every single day for 12 weeks - have to sit tight and hope for the best, if the bleeding continues on and on I will have to be reviewed at Chx cross which means a flight...

Anyways hoping that things all work out soon for you and glad you have such great friends and support as this makes dealing with it a little bit easier. Take care of yourself and try not to worry - although i know its hard smile. Wish there was more we could all do for you...

nerual Fri 15-Feb-13 20:16:39

MrsJD how are you doing? Do you have your appt date for CX next week yet?

MrsJohnDeere Fri 15-Feb-13 22:18:14

I'm fine. Going in for chemo in about 10 days. They wanted me to go next week but it was too inconvenient (half term etc).

Ashoething Sat 16-Feb-13 17:01:33

Good luck mrsjohn-I hope that you get the very best treatment and are back to full fitness very soon. Please feel free to pm me if you need more info/a chat. All the best.

lotsofcheese Sun 17-Feb-13 18:23:27

Just to say I'm thinking of you, MrsJD. I've heard chemo is pretty successful, but I'm sure that's no consolation for you just now. Hoping it goes as well as it can. Take care of yourself xx

nattnothing Mon 18-Feb-13 18:33:17

Mrs JD hope it all goes well and will be thinking about you xx

MrsJohnDeere Tue 19-Feb-13 16:26:13

Thank you all for the kind wishes thanks

Going in next Monday. They do an ultrasound, chest x-ray and bloods and then take things do there depending on what they find. I fully expect to be sent home again! I don't feel at all ill any more or like someone who needs treatment, if that makes sense. Still bleeding, but not heavily.

How are the rest of you doing?

nerual Wed 20-Feb-13 12:21:04

Glad to hear you are feeling better MrsD. I am also fine, just a waiting game for me really. Have my booking appt on Monday and am going to try and make them give me another early scan...no further cramps or bleeding though, which is hopefully a good sign...

nattnothing Wed 20-Feb-13 16:37:15

Great news nerual - hopefully things are looking very positive now and would be great for you to get another scan to reassure you.

I'm doing ok - still bleeding fresh blood daily - period like flow (13 weeks post D+C), now starting to think that this could not be good. Get next blood draw tomorrow and hoping for the best. Gynae have now scanned me twice showing clots and thinkened lining of uterus - not sure what that means??? However, to date levels have been falling and 2 weeks ago were down to 77, fingers crossed for next result..... The waiting is killing me and the continuous bleeding is so frustrating....

Will be thinking about you Mrs JD on Monday and please let us know how you are keeping x x x

hazeyjane Wed 20-Feb-13 19:11:42

Mrs John Deere - I had chemo at Charing x in 2006. It was after my 2nd d+c when my hcg levels were in the 100,000s. I was in for 3 weeks, whilst they started me on methotrexate. Once started, the chemo was continued at my local surgery and by district nurses, and I got into a routine of chemo and blood tests to check markers. Charing x appointed me a nurse liason (I don't know if they still have the same system) and she was lovely and I could phone her anytime with worries.

If you have any questions I would be more than happy to answer them, either here or pm. I kept a diary of the whole time, which I can pull off the shelf!!

Good luck next wrek, and look after yourself.

MrsJohnDeere Thu 21-Feb-13 19:41:09

Thank you hazey - always interesting to hear about other people's experiences. Wow, your levels were so high! Did you feel unwell before treatment started?

My levels are really pretty low, just not going away on their own (unless they magically have in the last week or so).

I am going mad waiting for Monday. It feels like an eternity. I hate not knowing exactly what will happen to me. They could still send me home if my levels have dropped. I actually do want chemo, perverse as it sounds, so it is all over and dealt with, rather than the stress of wondering what is going on and what the levels are doing every two weeks.

Nerual - all sounds quite positive. Still keeping everything crossed for you.

Nattnothing - I'm really surprised CHX haven't called you in. Doesn't sound right at all.

nerual Mon 25-Feb-13 10:05:16

Good luck for today MrsD, will be thinking of you, let us know how it goes.

artifarti Mon 25-Feb-13 10:45:16

Will be thinking of you today MrsJD. Hope all goes well. x

MrsJohnDeere Tue 26-Feb-13 12:35:06

Well, I'm in CHX having chemo. Had a stressful day yesterday. Sat around for about 7/8 hours whilst they decided what to do with me . Chemo was on, then blood came back lower so it was off (they were going to advise a 2nd ERPC instead as all the new growth is contained in one area), then they decided to go for chemo after all. The thinking was that my levels are just going to bounce up and down forever if left to their own devices, so it was better to be proactive.

Everyone here is lovely, which really helps.

Feel fine so far, other than a splitting headache, but that might be related to a lack of fresh air.

Ashoething Tue 26-Feb-13 12:48:18

Hi mrjohndeere-Am glad to hear that you are getting the treatment you need. I was also on the verge on a second erpc when they decided on treatment-though my hcg was in the hundreds of thousands! Hopefully your levels will start going down quickly now.

Are you on the low dose chemo?-means no hair loss which is obviously a plus! I found all the doctors and nurses very kind-I had prof newlands-who have you got?

I hope the treatment continues to go smoothly and that you are back to full strength soonest. Continuing to wish you all the very best! x

MrsJohnDeere Tue 26-Feb-13 13:24:35

Yes, low dose chemo. I have Prof Seckl who seems lovely. He's the one who does the video clip Q&A on the CHX molar website.

hazeyjane Tue 26-Feb-13 13:27:13

Glad to hear they are looking after you.

Sounds like a good decision to go straight to chemo, I wish they had done that with me, rather than a 2nd erpc, then me collapsing at work, and having to be rushed to ChX in the night, with hcg levels close to 500,000.

I found at the beginning it took a while for them to get the level of chemo right, and I had terrible mouth ulcers, let them know is you are suffering anything that could be a side effect.

I was under Prof Seckl. Look after yourself. x

hazeyjane Tue 26-Feb-13 13:28:09

crossposted! Glad you have him, he was great, and really helpful.

mistlethrush Tue 26-Feb-13 13:30:05

nattnothing - just in case it helps, I was haemoraging on a fairly regular basis before I got diagnosed. 2nd Erpc didn't sort it out and I ended up being admitted as an emergency in local hospital on the Friday (rather excessive as I'd been walking the dog earlier in the day) and carted off to another one by ambulance on the Saturday (again, excessive as I could have gone in the car with DH) where they did nothing with me until Monday when I had all the scans, tests and started chemo....

Ashoething Tue 26-Feb-13 13:36:26

My friend had prof sekyl and he seemed lovely-you are in very good hands.

nerual Tue 26-Feb-13 14:16:05

very glad to hear you are being well looked after mrsD.

nattnothing Tue 26-Feb-13 19:38:40

Mrs JD, so glad you are good hands and are now well and truely on the road to recovery! Look after yourself and keep us posted - I will be thinking of you x x

Mistlethrush - thanks for your info, how long were you haemorrhaging for post 1st DC - did they find out what was causing it? What were your levels like during this time? i think I may also need treatment as my situation is not getting any better! Are you all finished your treatment?

mistlethrush Tue 26-Feb-13 20:19:26

DS is nearly 8 - and he was after the mp, treatment and a year of not being allowed to ttc - so it was a long time ago for me now...

I had an initial erpc - but it was a bank hol weekend, on the way home from hols - and my Dr / hospital never got the feedback from the hosp that anything needed to be followed up. So I was back and forwards to the Dr over a period of 3 months with them saying 'it will sort itself out, its still early days' knowing things were not right. I ended up starting another bleed just as I was waiting to see the Dr - who was a locum so doing everything by the book, examined me, got me a scan the following morning - after which I was kept in and had another erpc as an emergency that afternoon. It was hoped that that was going to sort things out - but I had another bleed 2 wks later which resulted in the Friday admission and being carted off elsewhere.

But DS was after the mp. Unfortunately I had 2 mc after DS - both overshadowed by mp fears as my levels too AGES to drop (3 months) but they did eventually. However, it was too much to carry on with and we've stuck at one rather than continuing to ttc.

MrsJohnDeere Wed 27-Feb-13 13:22:17

Some really scary stories..

Some good news here. I might be allowed home on Friday, rather than Sunday. Not going to count my chickens quite yet though just in case. All depends on whether they can find someone to give me the final injection of this cycle at home (and no bad reactions in the next couple of days).

Ashoething Wed 27-Feb-13 16:55:49

I hope you are able to get home-as nice as the people at charing cross are I found the time dragged. Is cafe rouge still over the road? I was allowed to go there a couple of times when I had visitors and also with a couple of fellow patients for dinner-it was great to get out for a while! Also had a wee party for bonfire night in the tv room-anything to pass the time!

Do you have plenty of visitors?-I wish I wasnt so far away or I would have popped in! All the best!

MrsJohnDeere Wed 27-Feb-13 17:10:24

They won't let me leave the premises! In fact, they wouldn't even let me go down to Costa Coffee on my own in case I suddenly collapse or haemorrhage, apparently! After a couple of solitary days I had two visitors today which has been lovely, and they accompanied me downstairs. Got another visitor tomorrow too. Friends and family are being fabulous. Today has gone really quickly, which is great.

mistlethrush Wed 27-Feb-13 17:52:11

They were somewhat more robust in Sheffield - even though Leeds had treated me as though I was about to expire with all the immediate admission and ambulance down there the next day. They had (have?) a lovely conservatory where you could sit in the sun - although I tended to hang out in the TV room (which had lots of people in mainly on day visits). I only eventually persuaded them that I should be able to take 3 out of the 4 injections home with me to get the Dr to give me rather than travel in each time (the first day of each is understandable of course). On a couple of the 1st days I wandered down into the town and caught the bus back up too....

hazeyjane Wed 27-Feb-13 18:37:03

I couldn't leave either, Mrs JD, and I was there for 3 weeks! Have you got a private room? I was on the ward, because they had a VIP patient for the first week I was there, but then I was very lucky to be given a private room. Dh travelled up and down from Somerset and stayed with friends for a lot of the time.

I had to have the injections every other day, but after the 3 weeks I was able to have them done by the district nurse at home. Having the chemo couriered to me from London every 2 weeks.

MrsJohnDeere Wed 27-Feb-13 18:47:14

Yes, I've got a private room which is nice, with an amazing view over London.

They're going to give me 2 weeks worth of injections etc to take home, and then I'll collect the next 3 batches when I come back for the 6 week check up.

mistlethrush Thu 28-Feb-13 11:53:50

Gosh, sounds as though things have changed since I had this as they wouldn't consider sending home any more than one course at a time and wanted to see me before each one started....

I was only in 9 days but managed to lose my voice for the entire stay (prof used to come along on wards and then have a giggle at my lack of voice). grin

Ashoething Thu 28-Feb-13 16:30:40

I was in for nearly 3 weeks intially but was luckyhmm in that they let my mum join me-she stayed in nearby nurses accomodation-I bet the nhs budget doesnt allow for that now!!

After 2 trips back down to cx I instisted on having all further treatment at my local hospital-cx were great but I just couldnt cope with the flying after chemo-it was a horrendous and I am a bad flier anyway!!

Hope all still going well-keep posting and keep getting better!!

MrsJohnDeere Thu 28-Feb-13 17:24:56

Yes, before I came they sent me a leaflet about studio apartments that relatives could stay in (£50/night iirc) that are part of the hospital. I'm on my own here though (apart from a few visitors) as dh has to stay at home to look after the Dcs. He tells me that the house looks like a bombsite now, so I'm not sure I want to go home and see for myself quite yet.

MrsJohnDeere Fri 01-Mar-13 10:52:01

Allowed home this afternoon - yay! Got to come back on Sunday to have my 4th injection because they can't arrange anything locally at short notice.

I have to say, the mole staff - in fact all the staff here generally - are fabulous. So lovely, and friendly and warm. If anyone does have to come here you will be in very good hands.

nerual Fri 01-Mar-13 12:31:48

great news mrsd!!

Ashoething Fri 01-Mar-13 18:20:27

I hope that you are now safely back at home mrsd-I bet your family will be so happy. Continued good wishes.

nearlyreadytopop Sat 02-Mar-13 21:17:59

Tentatively come over to this thread as suggested by Mrs JD. (who is hopefully resting and being spoiled at home?)
5 weeks after mmc my HCG levels have not returned to normal. Finally got seen by consultant on Thurs who after scanning me thinks my pregnancy was partial molar. I am booked for an ERPC on Monday morning. I'm getting more and more worked up about it as the consultant said that it must be done by someone experienced due to the nature of the tissue and that its highly vascularised. Really just looking for reasurrance that it will be ok.

MrsJohnDeere Sun 03-Mar-13 09:18:50

Hello NRTP smile

Off to hospital for another injection this morning. Soooo tired. No pain but feel really out of sorts. Like the after effects of flu.

Back properly later.

MrsJohnDeere Sun 03-Mar-13 21:42:00

I could really do with some advice from those who have been through this and come out the other side. How much bleeding is normal? I'm confused because Prof S clearly said if you start bleeding lots then either phone CXH (if during Mon 9-5 hours) and they might arrange an ambulance or go straight to the local A&E and get them to call the oncologist on call at CXH. At the same time the nurses said some bleeding/spotting is normal and to be expected. I'm somewhere between the two. confused It started up this evening and is def heavier than spotting but hardly gushing out.

I feel better in myself than yesterday and Friday (when I felt like I'd been hit by a bus). Maybe I did too much and should rest more. confused

hazeyjane Mon 04-Mar-13 08:55:28

Mrs JD, I was told that if i was soaking a sanitary pad in a certain amount of time (this was 10 years ago so i may have not remembered right but i think it was 20 mins) also if i was passing anything clotty, to go to the hospital to get checked out. As I say I was in for 3 weeks, and in that time, I was barely allowed to walk around the ward, because of the bleeding. I ended up bleeding for nearly 9 months, but that was mostly a normal sort of period bleed. I think in the early days, it is probably a really good idea to take it as easy as possible. I would say if you have any concerns at all, then to call the Chx team and ask, they may just say to get checked out locally. Hope everything is ok. x

hazeyjane Mon 04-Mar-13 08:59:55

Sorry I meant to add, I know these things affect everyone differently, but i was whacked out by chemo, especially in the beginning. I didn't go back to work, and was on chemo for 10 months (this length of time is apparently pretty rare!), I found I had to have a lot of naps, and just take things very, very gently.

mistlethrush Mon 04-Mar-13 09:33:05

Yup, chemo floored me too - Every other weekend I could about make it round the park slowly with DH - then treatment would start again on the Tuesday and it all went down hill again. I was off work for over 6 months and in fact went back too early as my boss was threatening to employ someone else so there would be no job for me to do when I got back hmm

Ashoething Mon 04-Mar-13 18:06:46

mrsd-yeah chemo really knocked me for six but I kind of assumed I was unlucky as my friends seemed to sail through it. Sorry to hear you feeling shit. Re the bleeding-I never had anything heavy like you have decribed but did have brownish staining-like you get towards end of a period-for about 3 months although I seem to remember it got better a few weeks into chemo.

I would definately give cx a phone if you concerned-to be honest I found it a bit of a faff to try and explain anything to local hospital.

All the best.

MrsJohnDeere Mon 04-Mar-13 19:14:04

Thanks all.

It was heavy overnight but isn't so bad today. It seems to come after I left things or do anything even slightly physical, so I guess I should just rest more.

I will phone if it gets worse or carries on.

How is everyone else doing. Nattnothing, Nerual?

NRTP - how did your ERPC go? Hope you're taking it easy.

nearlyreadytopop Mon 04-Mar-13 22:14:45

Hi Mrs jd, glad bleeding has settled down. I'm still in hospital as I lost too much blood to be discharged today. Feeling slightly hopeful as both doctors who carried out procedure say they think its unlikely to be molar. Obviously only way to confirm is wait on tests coming back but am keeping everything crossed.

MrsJohnDeere Tue 05-Mar-13 09:28:56

Sorry you had to stay in. How long will they keep you in for? Good that it might not be molar? Do the results take ages to come back?

Bleeding got heavy again. I'm on bed rest but at home. I'm finding it tricky because I actually feel fine today and want to do things.

nerual Tue 05-Mar-13 20:39:16

Hey, I am doing well actually. Had scan today, measuring 10w5d and no sign of anything dodgy on the placenta (which I think is where the cysts would start showing up if it was another partial mole). Beginning to think that this pg might just be ok...

nerual Tue 05-Mar-13 20:39:52

PS very glad to hear that your bleeding is getting less as well smile

MrsJohnDeere Sun 10-Mar-13 14:02:36

Just checking in to bump the thread.

Still feeling ridiculously tired and a bit 'out of body' but very little bleeding at the moment. Round 2 of chemo starts tomorrow. Wonder if it will be harder this time because I'll be at home doing normal things rather than just resting in hospital?

Did anyone else see the discussion about choriocarcinoma on BBC Breakfast News this morning?

nerual Mon 11-Mar-13 09:55:02

hi MrsJD. I missed the choriocarcinoma discussion, might see if I can find it on some kind of ondemand service to rewatch (not sure if they provide that for new programmes though). Good luck for the chemo, let us know how it goes. It sounds promising that your bleeding is much lighter, but obviously not nice to be feeling out of it...

MrsJohnDeere Fri 15-Mar-13 15:52:08

hCG is down to 11. Looks like chemo is working! gringringrin

Hope everyone else is ok?

nerual Fri 15-Mar-13 19:25:33

Yay!! really good to hear that, how have you been feeling having the chemo away from hospital, has it been hard?
I'm ok, just waiting for my 12week scan next thursday. Still half expect them to tell me it's another partial mole (pm fetus can survive first trimester apparently)...I did ask them to check the placenta a couple of weeks ago for cysts and they said that they couldn't see anything, but still half expecting the worst (some days are better than others)...dread to think what my level of anxiety is doing to the poor thing. Anyway, not long to go now....

nearlyreadytopop Fri 15-Mar-13 19:47:57

Hurrah for the chemo and dropping hcg, glad its all going well Mrs JD.
Sorry for not replying sooner, I have been burying my head in the sand for the past few weeks.
Still no test results for me, though I am now getting negative preg tests. Its been ten days now since ERPC and yesterday after a week of very little bleeding I started to cramp and bleed a lot more. I dont know if its normal?
Nerual, Congratulations on your pregnancy. Will be keeping everything crossed for you for Thurs smile

nerual Sat 16-Mar-13 20:30:03

Thanks nearly. My pg tests also went negative after 10 days, also very little pain and bleeding after erpc (which is how i managed to conceive without af and only found out after BFP that my mc was a partial mole!). However I didn't have subsequent pain and bleeding after that, but if your pg tests are negative, it could be af? I think af can come at any time after an erpc, not always a full cycle passes...
Also lot of people with pmp seem to have bleeding for a long time after erpc, but usually then they seem to have high hcg (which yours clearly aren't because you have a negative pg test...)
I think there are guidelines about when you should be worrying about bleeding, not completely sure but something like changing soaking through a pad every hour or something like that?

MrsJohnDeere Sat 16-Mar-13 20:44:40

Nearly - did the bleeding get worse after doing exercise, or lifting, or more physical stuff? I found that to be the case.

I've been feeling a but sorry for myself today. blush I'd felt great all week, pretty 'normal' for the first time in ages, but since yesterday evening I've felt bleurgh. Nauseous, out of body, and I have a bit of a temperature. Perhaps this is just how it is at the end of each cycle?

MrsJohnDeere Tue 19-Mar-13 21:46:17

Got horrible eyes! Those of you who've been through chemo, have you any tips tips? I've been using the eye drops 4 times a day every day (more today and yesterday) but they're not helping.

nerual Thu 21-Mar-13 19:26:07

gosh, eye thing sounds horrible! how are they today?

MrsJohnDeere Thu 21-Mar-13 21:02:44

Sorry, I'm going to moan some more. I'm feeling very sorry for myself and ridiculously hormonal

Eyes less itchy but still running like crazy. I look like I'm crying all the time. Got a temperature but can't get warm and feel yucky - like being hungover except I'm not. I was sick this morning. Don't know if that's a side effect of the chemo or a mole thing. I'm too scared to phone Charing Cross to get my latest results (silly as I know they'd call if there was a problem).

And I burst into tears at ds2's parents-teacher evening so his teacher probably thinks I'm a loon too.blush

Tomorrow can only be a better day grin

Ashoething Fri 22-Mar-13 17:59:41

Mrs john deere-sounds like an infection to me. Are you sure you dont have conjunctivitis? I had that about 3 times during chemo. I would phone cx for advice just to be on the safe side. If you are managing to carry on with normal family life then I think you deserve a bloody medal! All the best.

nearlyreadytopop Sat 23-Mar-13 20:23:00

Mrs JD, how are you feeling now? Hope you got something to make you feel better.
re my little problem, I passed a rather large lump and bleeding stopped. Just like that. Still waiting on test results. GP phoned gynae secretary who said results had just come in but she couldnt give them out over the phone and also needed the consultant to interpret them. Hopefully this coming week I will find out.
Nerual, hope you dont mind me asking but how did your scan go?

MrsJohnDeere Sat 23-Mar-13 20:36:26

I'm feeling a bit better, thank you. The nurse who came yesterday to take my bloods said that I didn't have an infection because my temp was below 38 (it was 37.9 and my normal temp is 36.4). Not feeling so flu-ey now, but am taking vast quantities of paracetamol and Domperidone to keep headaches and nausea under control. Eyes are back to normal.

Still feel ridiculously tired amd hormonal though. Had beans on toast for dinner tonight because the thought of cooking anything more complicated made me want to cry! It makes me laugh that the doctors say methotrexate has no real side effects and you can carry on as normal!

nearly hope they don't keep you waiting long for the results. Do you still feel it could be a molar thing?

nerual Sun 24-Mar-13 16:11:05

Hey, actually scan was fine. All seems ok. Quite hard to believe. Still feel worried that I have partial molar cells rampaging around my body, but even if they are, it doesn't seem to be affecting the baby.
Nearly - glad your bleeding has stopped, hope you get your results soon.
MrsD - very glad to hear you are feeling a bit better. Perhaps increased chocolate intake over easter will help combat hormonal feelings?! ;-)

MrsJohnDeere Tue 26-Mar-13 14:19:23

Finally plucked up the courage to phone CXH. There were 3 results I hadn't had. Levels have gone up a bit and plateaued. Hmm. Don't know what the implications of that are. I assumed I was back to zero now because I hadn't heard anything from them. Have has a resurgence of nausea but assumed/hoped that was a side effect of chemo rather than a mole thing.

Another result is due tomorrow. Perhaps all will have magically resolved itself with that one.

MrsJohnDeere Tue 26-Mar-13 14:20:10

But, feeling much better in myself, so not all bad news smile

MrsJohnDeere Tue 02-Apr-13 11:36:27

hCG 2 - normal! Yay!

nerual Tue 02-Apr-13 15:08:46

WOO HOO!! congrats Mrsd!! hope you are having some champagne or something special to celebrate grin

MrsJohnDeere Tue 02-Apr-13 16:35:57

I might just do that. It's a non-chemo week so I am allowed 1-2 units. wine

Must been to see the GP to get more anti-sickness meds. It was a locum who admitted he had no idea what trophoblastic disease was or what he should give me for it! I liked his honesty. Much better than the ones who talk down to you or bluff their way through the appointment. I told him what to prescribe and then it turns out the pharmacy don't stock it. Have to go back tomorrow, a 25 mile round trip because of roadworks <sigh>

ToupOfRegDwight Wed 03-Apr-13 16:50:44

MrsJD I've been on this board before but have NC'd since then. You popped into my mind today and I'm thrilled to see that your chemo is working and your hCG is zero! Hopefully it all continues to go well!

nearlyreadytopop Wed 03-Apr-13 23:18:04

YAY Mrs JD and your HCG. So pleased it has dropped. Hopefully you got sickness meds sorted? I had hyperemesis with this last preg and the sickness medications are amazing at allowing nearly normal life to continue.
I got my histology results from ERPC and it wasn't a partial molar preg. Relieved but still no closer to knowing why. Consultant agreed to blood tests even though it was 'only' my second loss, I think it was because it was a later loss and I was being persistent.
Nerual, I hope you are well?

MrsJohnDeere Thu 04-Apr-13 17:28:17

Thank you both.

Have got cyclizine now. I haven't been sick since taking it, but still feel nauseous. It makes me feel a bit woozy too so I'm not sure if it is the best thing for me, particularly when driving. hmm

School holidays are proving to be challenging. I'm so tired and want to rest but the Dcs are having none of it!

NRTP- good that its not molar, but frustrating that you don't know the cause. Hope you get some helpful answers soon.

MrsJohnDeere Fri 05-Apr-13 22:18:42

Bumping to bring this to the top of the page.

Had a nightmare of afternoon. Had my FBC bloods taken prior to starting chemo again on Monday and a possible infection is suspected. The hospital phoned at 5pm to say that I needed the same bloods done again and some extra ones (CRP?). CXH need the results first thing Monday morning. Jobsworthy GP receptionist was less than helpful and wouldn't even ask the GP to fill out the paperwork to let me go to the local hospital and have it done tomorrow morning. She actually said 'if you want it done at this short notice, you arrange it'. 300 phone calls later and the best I can do is get an agency nurse to come at the crack of dawn on Monday, rush the blood to a lab, and hope it comes back all clear by midday Monday when I have chemo. Got to run this by CXH tomorrow. I rather suspect they'll tell me to go in (2 hour trip each way) on Sunday and have the blood done there. <sigh>

nattnothing Sat 06-Apr-13 13:41:28

quick up date - glad all is going well for must and great news Mrs JD that your levels are normal!! Sorry to hear the chemo has not been agreeing with you..... and neural glad all scans so far have been good!

I too have been normal since 7th March - yephee! I had to go to Charing cross at start of March (think I must have just missed Mrs JD!)and start treatment (Methotrexate) and also have an embolisation procedure for an uterine AVM (Aterio-venuous malformation) as I haemorraghed the day after my arrival there - the AVM is very rare and what was causing all the continued bleeding and pain despite my falling Hcg levels (although it took 4 months to reach normal and x2 shots of methotrexate. Procedure not nice and you need a lot of morphine etc during and afterwards but thankfully it has worked (so far and keeping fingers crossed). Still on the chemo at local hospital and have had no side effects apart from slightly sensitive eyes - in fact I feel normal after months of severe abdo pain and heavy bleeding. Charing Cross were amazing and I'm so thankful for their expertise in treating the AVM.

Finally this horrible saga is nearly over for me and I wish you all the best of luck for the future x x

MrsJohnDeere Sat 06-Apr-13 14:31:35

Glad you are normal too - fantastic news! I wonder if our paths crossed at all?

That sounds really scary! Did you collapse? Good that you now have a reason for everything (and hopefully have it sorted).

I agree, the staff at CXH are fab, particularly the specialist nurses. Prof S was lovely too, I thought.

What cycle are you on now? I'm just about to start 4. Hopefully it will all be over a month from now.

nattnothing Mon 08-Apr-13 10:53:38

yes was a bit frightening but did not collapse thanfully and staff were on hand and able to act very quickly. I dont think our paths crossed, when were you at chx?

I start my fourh and final cycle 15th April so fingers crossed all goes well and this will all be behind me soon. How are your eyes and side effects from the treatment?

MrsJohnDeere Mon 08-Apr-13 11:43:47

I think you must be exactly one week behind me, so we didn't cross. I went in on the 25th March, I think.

Eyes are fine, thank you. Waiting on blood results to see if today's chemo can go ahead (poss infection). I'm assuming no news is good news at this point (results due back 10 mins ago).

Still nauseous and being sick, but it is just about bearable. The key thing is fatigue. Having Dcs at home for the school holidays is not helping one bit with that. I just want to curl up in a corner and sleep.

Ashoething Sat 13-Apr-13 23:36:52

Hi mrsjdeere-hope you are ok and that the chemo this week goes smoothly. Thinking of you.

MrsJohnDeere Sun 14-Apr-13 13:54:12

Thank you. x

Bit of a funny week, tbh. I really haven't felt that great at all. No emergy at all amd generally felt crap. CXH seem to thing I had some sort of virus, but not so bad that it stopped chemo. I'm a bit better now than mid-week though.

I go back there at the end of the week to collect more methotrexate and review how things are going. I hope they do a scan. I'd love to see if all the molar stuff has gone. I'm not looking forward to the trip it'll though. I get knackered just from a short walk with the dog. Crossing London at commuter time will be something else!

MrsJohnDeere Sun 14-Apr-13 13:54:55

Sorry, many typos, chemo brain well and truly set in

Ashoething Sun 14-Apr-13 19:24:41

Yep the tiredness was the killer for me too. dh-then he was only dp-didnt understand it at all and expected me to carry on as normal-going out for dinner,out with friends drinking and suchhmm

I remember I was sent by taxi to another hosp as had taken conjunctivitis-again. On the way back I decided to walk as you could wait HOURS for hospital transport. Normally could have walked it in 20 mins-took me an hour and I collapsed when I got backblush That's when I realised I actually was pretty poorly tbh.

Hope that you are able to rest up as much as possible this week.All the best.

MrsJohnDeere Sun 14-Apr-13 20:12:41

Same here. The walk to Charing Cross from the tube station before chemo started took me 5 mins max at a brisk pace. The walk back there after the first week of chemo took half an hour and I seriously doubted I was going to make it, and just wanted to sit down on the pavement and cry. Feel much more tired now than then too.

I am counting the days and hours until the Dcs start back at school (Tues) as I just can't cope with them right now. I can catch up on rest then.

Ashoething Mon 15-Apr-13 23:04:30

do you not have anyone who could help you with kids? i honestly couldnt imagine having to be responsible for dcs when you feel so shit.you are one amazing women to be soldiering on! i hope that the chemo will be over for you soo.will keep fingers crossed.all the best.

MrsJohnDeere Sun 21-Apr-13 22:20:13

Start last round of chemo tomorrow.

Had crappy experience at CXH last week. Quite cross about it. Think the doc was having a bad day and took it out on me. Wary of saying too much on a public forum.

Feeling ok, other than tiredness and insomnia. Bit glum as my due date approaches. Can't believe how quickly time has gone.

fleur8 Tue 23-Apr-13 21:36:06

hi, I am joining this thread following MrsJohndeere message of support on a thread I started a couple of weeks ago (being having a bit of a breakdown since then!) still waiting on finding out if my MMC (my first pregnancy) was a partial mole. They are on the 2nd rounds of testing as they put it in their words "if its not a partial mole then its something very strange" which obviously is something I really needed to hear (not!).

MrsJohnDeere sorry to hear about your story but you have great strength and have coped so well. Really good to hear this is your last round of chemo too. Its so sad to think about the due date, am thinking of you and hoping it will ok.

MrsJohnDeere Wed 24-Apr-13 18:45:49

Hello. Glad you found the thread. smile

That wasn't the most sensitive wording from your doctor was it.

I'm fine, thank you. Had a bit of a wobble at the weekend (was p****ed off with a very insensitive doctor too which made it worse). Only 2 more chemo injections to go! I actually feel ok this week. Bit tired, but no nausea, sickness, shivering etc.

fleur8 Wed 24-Apr-13 21:06:34

that is good to hear, hope you are planning on celebrating with a nice big glass (or bottle) of wine when its over smile

I seem to have my wobbles when people are being insensitive. My mini breakdown started with someone telling me my biological clock was ticking (i'm 33), obviously they were not aware of what had happened but it is such an insensitive thing to say.

On another note I have received a letter from my doctor asking me to go in for an immediate blood test. The results of my last test (taken 2 wks after ERPC) has come back as HCG 43.78 so now 3 weeks on they want to test me again...should I be worried? I got what I believe was my period last week (4 weeks after ERPC) so I was hoping all was getting back to normal...whatever that is!

MrsJohnDeere Wed 24-Apr-13 21:31:28

That sounds promising to me. Even if it is/was a mole, the hCG levels are good.

43 is low, and my consultant said that a period wouldn't be triggered until hCG fell below 25. I guess they're just testing yours so that they have an idea what is going on before you start any 'official' testing (which can be
8-9 weeks after the ERPC by the time the registration with Charing Cross comes through and kits get sent out).

And at the ed of all this sounds great but, tbh, I've lost the taste for it in the last few months. Chemo works with alternate weeks on and off. On the off weeks I'm allowed 1-2 units 3 times a week (which is one tiny glass) but when I've tried it tastes horrible! My taste buds have been distorted I think. Not drinking has helped me lose a lot of weight though, so it's not all bad.

MrsJohnDeere Wed 24-Apr-13 21:31:59

Andconfused, I meant wine!

fleur8 Wed 24-Apr-13 22:13:43

thank you for you reply it has made me feel a bit more relaxed. I seem to go into panic mode whenever I hear from the doctors, dreading the worst. I should be pleased they are being thorough and checking all is ok but I so desperately want them to tell me some good news for once.

Yes I have heard that about chemo affecting taste, so hopefully when this is over you will soon start to feel yourself again. Maybe a nice relaxing holiday is in order.

It is so sad that trying to bring a new life into the world can be so heartbreaking and traumatic, I always took it for granted and never envisaged it could turn out this way. I really hope that I will want to try again but I don't think I could face going through this another time.

MrsJohnDeere Fri 03-May-13 22:01:04

Bumping to stop this thread vanishing. smile

The good news: chemo is over, I feel pretty good, almost normal (just can't do as much exercise as I would like as energy levels aren't quite there)

Bad news: bleeding again (molar stuff not period), mouth ulcers (now I've finished chemo, was fine during).

Feel very self-conscious wearing a hat in the sun but have been doing so.

lotsofcheese Sun 05-May-13 04:02:38

Great news you've finished chemo - have followed your story from the beginning. Also good to hear you're beginning to exercise & feeling better. Hoping you go from strength to strength.

My molar pregnancy was just over 18 months ago & I had a baby girl 2 weeks ago, so I'm due to have more samples done.

Keep posting & let us know how you're getting on. Take care xx

MrsJohnDeere Mon 06-May-13 11:18:05

Huge congratulations on the birth of your dd. Hope you're enjoying lots of cuddles. flowers

Bet it's a bit nerve-wracking going through testing again.

I'm good thank you. Counting the days until scans and my (hopefully) final appointment. Still another 6 weeks to go.
Mouth ulcers nearly gone. Lots of molar bleeding/discharge again. Don't know if that's good or bad. CXH not overly helpful when I asked.

biscuity13 Fri 10-May-13 20:32:25

Hi all, I discovered on 8th April that I had suffered a molar pregnancy with my first pregnancy and from that day on I just feel it has been bad news at every turn. I came across this site and just need to vent and find a bit of support from others who have been through the same.

I had to have a second d&c as I haemorraged badly and completely unexpectedly two weeks after the first. I then was admitted to hospital three days after the second op because of more heavy bleeding. I'm feeling low because of having to cope with the disappointment of the mc and the ongoing worry about the mp. I feel like a nervous wreck because the haemorrging really freaked me out and I'm terrified it will happen again, I'm scared to be alone in the house. I am now on tranexamic acid tabs and another one begining with 'm' which are supposed to control the bleeding. Has anyone got any experience with these? They seem to be working at the moment as bleeding is light although bleeding was light after the first d&c and then it all went pear shaped! I'm not even allowing myself to think about what else could go wrong further down the line, just trying to get through each day at the moment. We've got a cruise booked for the last week in May which I can't see myself being confident enough to go on and my sick note for work runs out this week but I'm dreading going back and something happening... sorry to vent but it's good to read accounts from others who have been through it.
I'm trying not to get paranoid about anything, just wondering how other people coped in the early days? I wanted a baby so much but this whole thing has freaked me out so much that right now, I'm questioning whether I can go through with it all again, not just the risk of another mc but just the whole gynae thing- just really want to get back to normal! x

NoahsMummyJul12 Mon 13-May-13 07:45:55

Sorry to hear you are going through this, and i am not surprised you are freaked out it sounds very scary.unfortunately I have no experience of this. I hope things start to get better for you soon. I also hope you get a response from someone who had been through it soon too

The reason I read this post is that I am currently going through a missed miscarriage/suspected partial molar pregnancy which was discovered on 3rd May. I have my ERPC booked for Thursday this week. I am finding it very scary and confusing as one minute I am told its not a pmp as my hcg levels are 3000 and a pmp would be in the hundreds of thousands but then the consultant says it looks likely due to abnormal placenta and elevated hcg levels as 3000 is high for where I am at the moment. I was wondering how long the results take to come back from charging cross too is it around 6 weeks? I will ask on Thursday but was just wondering on the meantime x

lotsofcheese Mon 13-May-13 08:16:45

I'm sorry you have found yourselves on this thread - miscarriages are bad enough without finding out that it's molar - and all the worry that comes with that.

Biscuity: don't hesitate in going back to your GP & being signed off again. I had 6 weeks off after my complete molar pregnancy. I was literally having nightmares & not sleeping. I don't think I could have coped at work.

lotsofcheese Mon 13-May-13 08:26:55

Noah'smummy: my HCG was 46,000 at about 7 weeks pregnant, when it was suspected it was a molar pregnancy. It took me nearly 6 weeks to get the diagnosis confirmed by Dundee. They like to start monitoring at 4 weeks from diagnosis, so it was a frustrating time.

I imagine things are more efficient at Charing X.

Thinking of you both over the next wee while.

MrsJohnDeere Mon 13-May-13 13:02:39

Hello Biscuity and Noah'sMummy - sorry you find yourself here.

Biscuity - I'm not at all surprised you are freaking out, totally understandable. I second the idea of going back to your GP and getting another sick note.

NoahsMummy - it was 5-6 weeks from ERPC to getting results back from CXH in my case, then another couple of weeks to get my first testing kit, then another week to get the first blood results back. It feels like an eternity! I had (have?) a partial molar pregnancy but don't know what my hCG was at the time of the ERPC (it wasn't suspected then, only discovered when the products of conception were analysed at the lab). I was told that, broadly speaking, hCG levels are much high with full moles than partial moles. My first bloods were at 9 weeks post ERPC and came back at 80something.

Please feel free to ask any questions if you think I can help (for ref I've just finished chemo - hopefully - with a partial mole, my ERC was back in Oct).

biscuity13 Mon 13-May-13 15:44:47

Thanks everyone for your support.
Noah's Mummy-best wishes for the ERPC on Thursday. The whole confusion thing from the medics is very common I have found. Every time I go back to hospital I see different people and get blank looks when I explain I've had a molar pregnancy. I wasn't told whether it was partial or complete but will ask the consultant when I see her next week. My hcg was 400 000 on the day of my ERPC and after second one was 3000 which is my most recent result. I am under the care of Sheffield and so far although it is very early days I have found them really efficient. They sent the first sample bottle through 3 weeks after the first ERPC. I wish that I could be tested weekly though rather than have to keep waiting. If my hcg levels had been tested weekly after the first ERPC, the fact it wasn't going down would have been noticed and I could have avoided the haemorrhaging. I'm seeing the GP on Thursday and will ask about this.
Has anyone got any experience of being on tranexamic acid and mefl.. something? I'm now 12 days past my second ERPC and bleeding (browny/pink) is light but is not lessening yet. Does this sound ok?

MrsJohnDeere- glad your treatment is hopefully over. How has it been? I was managing to keep positive about hopefully not needing this as it is still early days for me but my friend came over yesterday and I mentioned it to her which was the first time I had actually said it out loud and she looked horrified which ended up scaring me.

All the best to everyone going through this horrible thing...

nattnothing Mon 13-May-13 15:49:54

Sorry to hear that there are some new members to this thread - I hope that you find support from it and feel less isolated and frustrated kowing that other have been through this and made it to the other side smile

Mrs JD can I ask how you know that your bleeding is molar related and not your period?

mistlethrush Mon 13-May-13 15:52:02

biscuity - the sheffield team are lovely. I only got a diagnosis 3 months or so after my first erpc (hospital (in UK) on hols didn't think that they would share that gem with my hospital or Drs so I kept on going back to the Drs with heavy bleeding and being fobbed off) - then 2nd erpc - and 2 wks after that levels still significantly high (certainly '000s, might have been 20 but I can't remember now).

Nurses were particularly lovely in Sheffield. Consultant was eccentric but also nice.

nattnothing Mon 13-May-13 15:59:24

Biscuity13 - I was on the tranexamic acid on and off for continued heavy bleeding and mefenanic acid for lower back and abdo pain. I bled daily for 15.5 wks after ERCP and eventually haemorraghed at Charing Cross during treatment and had to have an embolisation procedure - fine now and glad the ordeal is over! I dont think you should be on tranexamic acid long term - I only was put on them for 5-7 days at a time. Have you been told if you are to reduce them or stop them? Hopefully it will stop soon as many women can bleed for many weeks post ERCP - chat to your Doc about it and the meds and see what they say.....

Keep us posted on how you get on smile

MrsJohnDeere Mon 13-May-13 16:13:16

Nattnothing - it doesn't look like a period at all. It is strings of slime with blood in it or lumps of tissue or tiny blood clots.

I wonder if a period is on its way though - first in over a year! - as I've got horrible spots and random pains (ovulation pains). Reckon I'll have a period 2 weeks today.

biscuity13 Mon 13-May-13 16:14:01

MrsJohnDeere- I have just been back and read your story. Fingers crossed it is all coming to an end now for you.

Nattnothing- I am on the tranexamic and mefenanic three times a day and have been for 9 days now. They gave me a huge box of each after I left hospital a week ago today and said to continue with them until the box is empty! I thought this was a bit strange but trusted they knew best. I will mention it to GP on Thursday but am not confident they will have any answers. Being on the tablets reassures me that I hopefully won't haemorrhage again but I am concerned about being on them for so long and wonder if it could mask symptoms?

Mistlethrush- thanks for your comments about Sheffield- just hope I never get to meet them! 3 days after second erpc my hcg was 3000 but haven't had a newer result since then, won't until the end of next week which worries me...

nattnothing Mon 13-May-13 16:21:31

Mrs JD - that's awful but hopefully your period will be here soon and your body can get back into a regular cycle.... Mine has taken a bit to settle 20 day cycle, 22 day cycle and now 28 day cycle. Its just so hard to know what to expect, I had x2 periods during chemo (not sure if they were true periods - bleeding with little or no clots that lasted 3-4 days).

Biscuity13 - defo get your GP advice as my local hospital were totally useless - nice but pretty clueless and its so frustrating!! I agree that you dont want the meds masking an underlying issue as I had a uterine AVM that was being masked and obviously needed treatment/procedure to stop the bleeding.

NoahsMummyJul12 Tue 14-May-13 10:52:38

Thank you for your messages! I am so pleased I have found this board and people who have been through/going through this too. I am sure I will be asking lots of questions especially when I have the diagnosis. I have a feeling that it will be confirmed as partial molar, I have no idea why I just do. I am quite trusting of my feelings at the moment as I had a feeling all throughout the wait for the scan something was not right. Fingers crossed this time my feelings are off though!

Thinking of you biscuity13 and I hope you are doing ok today

x

biscuity13 Thu 16-May-13 11:12:58

Hi all, how is everyone doing?
I'm feeling down again today as 2 weeks after my second D&C it looked like the bleeding was coming to an end and then it got much heavier again yesterday, not enough to seek help but enough to start the worrying and panicking all over again. I've been to the GP today and been signed off for another 2 weeks so that takes the pressure off a bit more. She said bleeding can fluctuate which is what the nurse told me from Sheffield when she phoned the other day. I'm also feeling emotional again today about the loss of the pregnancy, seems like every time I turn on the TV, there are happy couples with babies. I yearn for that but at the same time am scared to even contemplate trying again once I am able. No point to this post really, just wanted to vent! Hope everyone is doing ok today.

biscuity13 Thu 16-May-13 11:14:05

NoahsMummy- have you had your diagnosis yet?

mistlethrush Thu 16-May-13 11:45:08

biscuity - its as if every pregnant woman or parents with small children come out and stalk you when you feel like that - I know the feeling well. Hope all OK with you and its not bad news - when are you due a test or results?

biscuity13 Thu 16-May-13 12:16:20

Thanks mistlethrush- Sheffield have asked me to do a blood test tomorrow with the GP and they'll have a look at that and the urine sample I am due to do in a couple of days. Got an appointment with my gynae consultant next Thursday and will have another blood test done then. I'll feel happier once I start seeing the results come back- it seems to take forever waiting and not knowing.

NoahsMummyJul12 Thu 16-May-13 22:54:06

I had my ERPC today and it went well with no complications. They said I should get my results back in around 2 weeks but after reading your posts I don't think I will hold my breath. Was surprised when they said if it wasn't a molar I wouldn't be notified! I thought they would as they suspected it to be one and told me so!

The waiting sounds so frustrating Biscuity and I can understand why you need to see the results come in. Sorry to hear you are feeling very emotional and totally understand why x

Ashoething Sat 18-May-13 14:30:56

Great news about you finishing the chemo mrsjohndeere!-so happy for you. To the other ladies on the thread-please feel free to pm me. I had my mole and chemo 13 years ago but would be happy to try and answer questions/give support. All the best.

biscuity13 Sun 19-May-13 17:15:01

NoahsMummy- glad the ERPC went well and fingers crossed everything continues to go well.

LucyElizabeth10 Fri 24-May-13 14:21:36

Hi. I have recently been diagnosed with a PM pregnancy, and have followed a different path- as I live in Greece.
Instead of waiting for hCG levels to plateau, they treat you with Chemo -Methotrexate- immediately.
I had 3 lots over 3 weeks starting 19th April; the day after my D&C to remove the overgrown placenta (but no baby) discovered that afternoon at my first private scan at 7 1/2 weeks.
Everything has almost passed me by, as normal life continued around me, husband, toddler, business to run. etc...
To start with, I was almost relieved to hear that the pregnancy was not normal- as I had been suffering with such accute nausea prior to diagnoses. But since then, I have felt worse and worse.
I have been working more or less throughout the process (apart from the day in hospital for chemo & day after) and I am beginning to lose the will to make any more effort.
My hCG is still not under 50. Even though I had the chemo. It has 'stabilised' at 160+ for a week, and I have just had another D&C on 21st May.
I'm not sure what I need/want from posting this- but am feeling more & more panicky by the day.
I have great support from my husband & friends- but for some reason I still feel alone.
I shall have a private blood test for my hCG on Monday, as I can't wait for the hospital appointment on Thursday. I so hope it will go down.....

mistlethrush Fri 24-May-13 14:51:12

I had 9 'courses' of chemo - this was one injection every other day, four injections in total - before I was clear. I found the chemo wiped me out physically - it made me very tired - other people have different side effects or none at all.

LucyElizabeth10 Fri 24-May-13 15:02:37

That's what worries me- I think they will tell me next week that I have to have more chemo. Which means being hooked up to a drip for 4 hours. And feeling rubbish for a couple of days. I just wish I could get down to zero & start to move on....

LucyElizabeth10 Fri 24-May-13 15:04:30

Also, my last 'period' was in Feb, and I have no really had any bleeding since.... minor after both D&Cs.... it seems like everyone else experiences lots more bleeding- although I'm not complaining.... should I expect it at some point?

biscuity13 Fri 24-May-13 15:50:54

Lucy Elizabeth- haven't really got much useful advice I'm afraid but just wanted to welcome you to the board and wish you the best of luck. I'm sure that with the chemo your levels will start to come down. It sounds like you need to take some time off work and just let yourself get some rest if that is possible. The one thing I have learnt from this molar pregnancy thing is that everybody's experience is slightly different and everybody's body seems to act in different ways so I don't know what one can say is 'normal'.

Sorry this isn't much help but fingers crossed for you.

biscuity13 Fri 24-May-13 15:56:12

Does anyone know if hcg levels have to be very low before AF returns? I assumed they did but my consultant told me yesterday they could return any day now. My hcg is still 299 or 1.33 according to the urine system that Sheffield use. Surely this is too high for AF to come back? I'm panicking as I really don't want it just yet. I'm still bleeding lightly after the D&C 3 weeks ago and as I have haemorrhaged previously, if I suddenly see a load of fresh blood I will really freak!

mistlethrush Fri 24-May-13 22:43:30

Biscuity - I found it easy to tell between the two types of bleed...

LucyElizabeth10 Sat 25-May-13 09:12:20

Thanks for kind words; had a bad day yesterday and really felt like I needed to communicate with people who were experiencing some/all of what I am going through. Just reading other's experiences does help. I know things will turn out ok.

Maidenmeadow Tue 28-May-13 20:47:10

Hi. I was diagnosed 14wks into my pregnancy with a complete molar pregnancy in late January of this year. They did a D&C on me and then I had to have weekly blood draws to insure my hCG levels were dropping. 6wks into the testing I was called by my family Dr and told he was referring me to a OBGYN oncologist because my hCG levels had a raise in them. It was the oncologist who sat me down and told me I had developed gestational trophablastic cancer from the tumor/mole they removed from me. I have been on chemo for going on 12wks now. They placed a PICC line in my arm that later had to be pulled due to it causing a lg blood clot in my throat. I am on anticoagulant therapy for 6 months thanks to the blood clot where I have to give myself a shot twice a day in my stomach. I'm looking for someone to talk to who has gone through this or is now going through it. My family is a horrible support system and I feel very alone and scared. There's nothing like being told you have cancer....especially from something as innocent as trying to have a baby.

biscuity13 Thu 30-May-13 12:14:33

All my sympathies..... I can't offer much advice or support I'm afraid as I have not been through what you have but I didn't want to read and run. I had a complete molar last month and am under the care of Sheffield. I can imagine that you are feeling very alone and scared. If your family is not supportive, is your partner around and taking care of you? Do you have friends you can rely on? I hope so. I really empathise with your last sentence, 'especially from something as innocent as trying to have a baby.' I have found myself thinking that many times over the past few weeks.

So sorry to hear about all the horrible treatment and I really hope everything goes ok for you. x

LucyElizabeth10 Sat 01-Jun-13 10:36:46

Maidenmeadow, what a terrible experience you have had. I can only imagine how scared and difficult it is for you. I have recently had a partial molar at 7 1/2 weeks, and received chemo immediately as I live in Greece and the protocol here is different.
Reading online has had both a good and bad affect for me. It is certainly scary, but these forums/blogs are good support- so please read and take strength from us that have had similar, if not the same conditions. I hope you are feeling better soon.

squizita Thu 06-Jun-13 10:25:02

Hi guys... you might be wondering "what's she doing back after an all clear?" basically I am wondering that myself!
As you may know I had a molar scare which turned out to be a MMC. Scans show no molar tissue. The pathology/histology showed no molar tissue. HOWEVER the genetics showed a 69 trisomy, and my HCG is lagging (going down but slooowly over months/weeks not days) so I have been referred to Charing X for tests. I had a massive freak out because I thought they must want to chemo me... but they contacted me by phone and kindly explained it was because I live locally to Hammersmith, it would be daft not to do the most basic tests there.
In fact they seemed quite calm: "no signs of molar inside, you're partial which is only 1% chance of chemo, and you have a mild lag in HCG (9000 pre-erpc down to 300 in one month then lagging)."

Still scared - well, at least it's not a heterotopic which they thought it might be and I might rupture/lose a tube!! It's just my symptoms are so weird.

Well, my PG fell right down finally on Monday, and I'm having a second lot of bleeding which looks MC-ish not period-ish if that makes sense. I let them know and they said that unless it was painful or v heavy it was possibly a good thing as it could 'get things moving' (ie flush out my HCG). I really really hope so!!

squizita Thu 06-Jun-13 10:28:04

PS. The woman on the helpline said 'typically' the worst case scenario (ie 1/100) would be "one course of chemo to clear it all out" ... I feel like a crazy woman because I am still invisioning months of the stuff!! Why??

squizita Thu 06-Jun-13 13:42:12

PPS. Now terrified because everyone on here, contrary to what the docs said, had problems when they bled. sad I have rung the helpline, they were on their lunch, hope they ring back.

biscuity13 Wed 12-Jun-13 11:11:10

Try not to worry, it sounds like it isn't molar but that's the only condition I know about I'm afraid as I haven't experienced anything else. You posted last week so you're probably more in the know now but I was also told by Sheffield that the bleeding 'flushes out' and brings down the hcg. And that's how it seemed to work for me. I have stopped bleeding now and am expecting a much smaller drop this week than I have been having. Hope everything has gone ok for you.

squizita Wed 12-Jun-13 11:23:45

Thanks for you message. They are treating it as a partial molar via Charing X now. Essentially they didn't find any molar tissue, but I have lagging HCG and a triplody was found, so they feel it safest to proceed as if it is a partial molar with a teeny bit of molar tissue in there somewhere.

I have had various scans etc' on Friday - again nothing untoward like tumors seen, so they sent me off with 6 weeks of blood test boxes.

My serum on Friday came back at 265, so over 100 under the week before at my local hospital (though I am comparing 'crude' to serum results there - my crude on Friday was 284, so still a decent fall from 380 crude at the hospital).

Just had my first lot of weekly bloods locally. Nurse was lovely but not the gentlest with the needle. grin Fingers very crossed for a bit of a fall - only 5 days later (they said this was OK for week 1, as in terms of admin Weds is the best day) then after that weekly for 6 weeks.

Bleeding has tailed off... now I've had a fall, I wish it would start up again! hmm

biscuity13 Wed 12-Jun-13 20:10:50

Glad they are sorting you out. At least Charing Cross and Sheffield are really efficient from what I have seen and are experts in the field. It reassures me when I speak to them. I had a complete molar in April and needed 2 D&Cs. I'm on weekly urine samples and so far, it has been dropping a lot and this week I've had some signs that I may be ovulating again for the first time so that's good. Fingers crossed we'll both come through this as quickly as possible!

fleur8 Fri 14-Jun-13 21:09:23

Hi all, I last wrote on here back in April as they were still investigating whether I had a partial molar (following my ERPC from a MMC in March) finally today I got the confirmation that they believe it is so I have now been referred to Charing Cross. Not the news I wanted to hear as I have been trying to get back to normal these last couple of months sad

My HCG levels did got back to a normal level in May so my consultant thinks this is reassuring and I am trying to be optimistic... but its so damn hard when you keep falling into this 'rare 1% category' ...rare to have a mmc, rare to have a very short cervix (thats a whole other story!) and rare to a have a molar / pregnancy...its only fair to be in the 99% this time!

here hoping we all get the good results and this can be over for us all soon! smile

squizita Sat 15-Jun-13 10:11:23

Fleur I know what you mean about the 'rare' thing. Prof Seckl said "only 1% of partial moles need chemotherapy" and I said "what like 1% of women lose 3 babies in a row, and 1/600 women have a partial molar in the first place...?" And he said yes, women with rare things are wary of statistics.

It is a very good thing that your HCG has fallen though - that should mean if it stays down you can TTC (if that is what you want to do) after 6 months. If you have 0 HCG, Charing X will just check your wee and blood by post and then tell you when you get the all clear. After that they track you once a year, and as far as I have been told the vast majority of women in our position have children and lead a perfectly normal life.

I have had my first set of bloods since a recent bleed - seems to have broken the plateau the docs were worried about. I was kind of stuck in the 300s (going down only 20 or so a week with a blip up to 380 from 360 at one point!) but since then I had serum blood on the 7th of 265, then serum blood on the 12th of 108 ... so things are moving again. Hope they keep going - slow movement now I'm close to 0 would make me super frustrated!

biscuity13 Sat 15-Jun-13 15:12:02

Fleur-sorry it ended up being a molar but at least your HCG has gone back to normal now. Has it stayed down? Let's hope that it has properly gone!
I'm feeling a bit down today because I was expecting my latest results in the post this morning but they didn't arrive so now I can't find out until Monday and last week my urine was 0.43 so I was really hoping to find out that maybe it was below 0.35 this week. I'm finding that now the physical side of things is back to normal (I bled a lot after both d&cs), the emotional side of things is starting to affect me more. I was in tears this morning just because they mentioned on the radio that William and Kate were at Trooping the Colour and it reminded me of all the baby stuff that there is going to be around next month- really not looking forward to all that. Squizita- glad you are moving downwards again now- here's hoping it continues! Does anyone know what 0.35 in urine compares to with blood hcg levels?

fleur8 Mon 17-Jun-13 21:31:30

Squizita, really good to hear things are heading in the right direction, fingers crossed you get there soon. My consultant did say to me that not everyone HCH is 0 (due to your kidneys also producing this) so he said normal was classed as 0-4.83. The last test I had in May was 2.39 which he said was normal and sent me on my merry way...it was a good feeling although it only lasted a month! At the moment I feel scared about TTC again when this is all over, as if I did get pregnant it will be the most terrifying months ever. I wish I could still be that naive person and enjoy a pregnancy without knowing about all these bad things that can happen sad

Biscuity13, I have no idea if it has stayed down since May, just fingers crossed it has!! I have my first blood and urine tests tomorrow and am feeling a little anxious.... did you get your results through? (sorry I have no idea of the urine compared to blood). I am completely with you on the emotion side of things. Physically I am back to normal but emotionally I can be a wreck one minute and fine the next! I cannot wait for this year to be over... 2013 has definitely been unlucky for me!

biscuity13 Tue 18-Jun-13 15:21:12

I also feel scared about TTC again. I really want a baby but the thought of going through all this again horrifies me! Like you say, we will be panic stricken the whole time so won't be able to enjoy it. Also, my memories of when I thought I was pregnant, in the 10 weeks before a molar pregnancy was diagnosed are not good. I felt really awful, physically exhaused but also emotionally very low. I now think that was due to my hcg levels being so high (400 000) and messing with my brain but it still worries me that I could feel like that again. I was told yesterday that my hcg is now back to normal as it is 0.13 but I know it could still go up. If everything continues ok, I'll be TTC again in November/December, almost exactly a year since we last started trying. But like you say, it'll be difficult to deal with. Hope the results went ok for you today.

50degreesintheshade Tue 02-Jul-13 16:15:48

Hello,

I had a d and c 10 days ago and I just got my results back for a complete molar pregnancy. I'm in shock, I don't know what to do! I live in dubai but I am back in the uk for 8 weeks. My husband will be talking to my dr tomorrow and I have worldwide health insurance ( thankfully) but I don't know what I have to do.
I can't believe this is happening, in 3 short weeks I feel like my world has been turned upside down :-(

pizzaqueen Tue 02-Jul-13 22:20:05

Hi, I'm sorry anyone has to be on this thread. What a truly awful thing to go through confused.

I'm not sure if I should even be on this thread but I'm worried i might have a molar pg and in need of support and advice.

I will try to cut my story short. I miscarried by haemorrhaging on 21st June (started with slight bleeding the week before). Previous scan had shown an empty sac about 6 weeks, but I expected to be around 9 weeks. The doctor manually removed tissue in hospital to stop the bleeding, and a follow-up scan a week later showed I had retained 'products' but they will wait and see another 10-14 days and rescan. I was called by the hospital this morning as the tissue they removed in the 21st has tested 'abnormal', they took my blood for hcg which is sitting at 322 which they said is much higher than they would expect. I have to go back in a few days to see if this is falling.

I'm worried this is a molar pregnancy with the abnormal tissue results and higher hcg? is this what happened to anyone on this thread? I feel very luck to already have my DS but I am scared what this might mean.

Sorry for the ramble, just need to get it out somewhere. There may be other reasons my hcg is still up, but I can't find any other explanations for the tissue result or even what this means. The nurse wouldn't discuss it until I have an hcg comparison.

squizita Wed 03-Jul-13 12:21:12

Hi PizzaQueen - sorry to hear of your sad and worrying situation- my HCG got stuck at about 300 too and I had a triplody. I had loads of blood tests to rule out heterotopic pregnancy then referred me to Charing Cross. They did various bloods and scans and screenings, all in one day.

I was so worried about having to stay in a week and have mexo! And not being able to TTC for up to a year! sad

[happy] BUT thankfully just before I went in the local consultant checked my progesterone (which had been falling). He said my bleeding might increase (I had very little)... lo and behold it did and luckily this re-started the HCG drop. The Prof at Charing X mentioned 'tiny roots' of material that could be left behind... the lag in HCG being caused by them having blood supply not how much was left. I had hardly any but it was causing a lag... once the clots came out HCG fell again. Phew! I have been going for blood tests which are sent to Charing X, and last week was down to normal. Once they are satisfied it's staying that way they said they will clear me to TTC again within the 'quick' follow up bracket (I was out by a day or two but as I'm a recurrent MCer they were really reasonable about it).

Of course I can't say what they'll say to you BUT at the start of the process I assumed any sticking meant in-hospital treatment and no TTC for a year. But my story shows it doesn't always mean that: the fall can stop then re-start and you can be back TTC within 6 months.

There is a website called www.molarpregnancy.co.uk with a great forum. Very useful for support and "TMI" answers about bleeding etc!

pizzaqueen Wed 03-Jul-13 13:36:25

Thanks squizita, it is really so helpful to hear from someone who has been through and knows what I'm thinking and going through. (And who has quite a positive story).

I'm still hoping I get my repeat bloods tomorrow and they are coming down. Can I ask if you had a ERPC or D&C, or did it all happen naturally?

I'm in my early 20s so if I had to wait to TTC again wouldn't be the end of the world (although the sooner the betterwink) but I am worried about complications and going through all this again. I have a toddler to look after and financially can't afford to be unwell and take any longer off work.

Thank you so much for sharing your story.

pizzaqueen Thu 04-Jul-13 23:28:54

my levels came down to 200 today smile which is reassuring that it might not be a molar and but still no explanation for the abnormal tissue results? more tests every two days to make sure levels keep coming down, fingers crossed!

I've had some weird mucasy bleeding and passed a clot about golf ball sized today too. not sure what to think but hope its a sign my body is getting rid of retained products.

squizita Tue 09-Jul-13 09:28:39

Good to hear they've fallen to 200, hope they continue to go down.

I had an ERPC originally, thank goodness for all the follow up it was how the issue was picked up. Weirdly I seem to be the opposite of you... all the worrying symptoms except no abnormal tissue!

Which turned out good because Charing X have cut my TTC time short yay! In light of no actual tissue found, they reckon relapse is very unlikely.

biscuity13 Fri 12-Jul-13 10:16:18

pizzaqueen- hope your hcg is continuing to fall and sorry you had to go through this. I had a complete molar in April and it is utterly horrible.

My hcg levels had come back down to normal and I got the letter from Sheffield confirming it. But last week, although still just in the normal range, it had risen again. However, I have since had my first AF. Does anyone know if hcg can rise and fall during the monthly cycle? At the time I did the sample where it had risen, I was ovulating so could this have raised it? I'm about to phone Sheffield to find out my latest results but am so scared it is rising again after finally feeling like I was getting back to normal.

pizzaqueen Fri 12-Jul-13 15:10:52

thanks biscuity. my levels came down to about 130 in four days; I had another scan that showed products still remaining so the docs decided it was just the mc taking a while to complete rather than a molar, which I am so thankful for, although im still waiting for my levels to return to normal and it's been 5 weeks now. I am still no clearer as to what the abnormal tissue was though.

Good luck for your next results I have everything crossed for you

50degreesintheshade Fri 12-Jul-13 19:35:16

Hello,
I have seen a lovely dr in the uk and had my first bloods taken this week. I have just got my results and they are 569. I don't know if this is a good decrease or not as I have not had my bloods taken before the d and c. Fingers crossed that they continue to drop.

LucyElizabeth10 Mon 15-Jul-13 18:22:40

Hi
I haven't posted for a while, I was diagnosed incorrectly with a partial mole in April (in GReece) and I am now under Dr. Savage in Charing Cross. I have just completed my first Chemo cycle and my hCG went down to 61, then back up to 70. Am feeling very up & down and a totally useless mother to my toddler.. PLease can someone offer advise who had been through this....

MrsJohnDeere Mon 15-Jul-13 21:57:34

Hello all. Sorry not to have posted for ages. Life has been very hectic of late.

LucyElizabeth - I finished chemo at Charing Cross a couple of months ago (under Prof S though). Try not to be down-hearted. I was told it was normal for hCG to rise a little when you start chemo, then plummet. I'm surprised they even measured it during your first cycle. The numbers are still pretty low which is good. Please feel free to ask any questions if you think I can help at all.

It is tough to look after children when having chemo but it will only be for a few weeks and your toddler won't remember any of it. Just do the bare minimum to get through the next few weeks, even if you just eat sandwiches and toast and watch far too much TV. Fwiw I found that after the first cycle the chemo weeks flew by and then the 6 weeks from ending chemo to going back for follow-up dragged so badly!

I have been totally head-in-the-sand about my hCG since finishing chemo. I assume that if there was a problem someone would call. I still find it hard to relax and believe that it really is all over (that 3% relapse statistic eats away at me). I also get paranoid that I am pg. Still no period yet (last one was 15 months ago!). I hope that by posting that it will arrive within the hour!

Bluelass Wed 17-Jul-13 21:28:17

Hello all,

I'm new to this thread so apologies for gate crashing, but I'm looking for some advice.

My husband and I are thinking of ttc again next month. Our story is that we were diagnosed with a pmp at our 12 week scan in April. My levels went to 0 within 5 weeks, and have remained so for all other tests to date.

My cycles have returned to normal and settled to a 28 day cycle, currently on 3rd AF since d&c.

We very much want a family and want to try again sooner than the six month wait advised, as from all accounts the risk is minimal. It also took us around 14 months to conceive this pregnancy.

So m really looking for reassurance that trying again two month before the "all clear" isn't a bad idea.... [shocked]

MrsJohnDeere Wed 17-Jul-13 22:11:39

Bluelass - hello and welcome smile

I'd go for it tbh.
Prof S at CHaring Cross told me that they have to hand out the advice about waiting for 6 months but that most people he sees ignore him and go for it straight away!

Coming at it from the other side, I was told to wait a year (because I had chemo) and don't actually want to ttc, but he told me that if I did I might not want to wait a year because, in his words 'you're no spring chicken are you?!' (I'm 41).

Bluelass Thu 18-Jul-13 09:19:50

Thanks for the reply.

Good to know I'm not al

Bluelass Thu 18-Jul-13 12:58:26

Tried to respond earlier from my phone but it only partially worked!

MrsJohn - thanks for your response and advise. It is good to know I'm not alone in thinking that it is okay to start to ttc again. Sometimes I think that the 6 month rule should be reviewed based on each individuals experience, as one size doesn't fit all!

I'm getting excited about moving forward from the past few months of limbo, and hopefully starting our family!

Ashoething Thu 18-Jul-13 16:04:28

Hi bluelass-I had the high dose chemo 13 years ago following a partial mole. I conceived 5 months after finishing chemo-purposely-as was so desperate to have a baby.

Sadly we lost that dc at 24 weeks. I was told it was due to cervical incompetence but did ask if it could be due to the chemo and they said no.

The only thing I found was that I had to fight to get extra check ups.They weren't going to give me an early scan despite my historyshock

Hope it all works out for you.

NoahsMummyJul12 Thu 18-Jul-13 23:05:46

Well looks like I am back :-( in May 2 weeks after my ERPC I got a call to say it wasn't a partial molar as suspected. However today at an appointment I assumed was just a follow up, I was told they still have a suspician it was a mole and I have been Referred to Charing cross! Feel like I have been thrown back 9 weeks to all the worry and anxiety. AF arrived yesterday so I was pleased my body was getting back to normal then bang back to the start :-( x

LucyElizabeth10 Thu 18-Jul-13 23:44:02

-MrsJohnDeere; thanks for writing. That makes me feel normal; or at least makes me understand it is not just me... which is always nice to hear.

Got my hCG from second week of first cycle chemo and it is 50; so am MEGA pleased. Totally killed me last week when it increased, even though I had been warned.

-MrsJDeere- how long did you have chemo for and what were your starting levels?
I am desparate for another child, so for me time is a real factor as I am 37 in December and never expected to be facing motherhood approaching my 40th birthday- which looks very likely now. (or at least close enough if I manage to conceive real fast when we ttc, hopefully at the end of next year.... )
Intersting what Prof S said to you re. 'no spring chicken'..... and rather tactless (!)

I wonder also how long it plays in your mind about waiting for the hCG after you are down to zero... So many things to think about.

I was thinking about work also; all this sitting about feeling tired/annoyed/fed up/depressed.. would it be better to try and work maybe? I am lucky that I have the choice & the support of my family, but no my life is down to a 'needle' day or not. Sad.
I worry that if I did work; I would have lterally zero energy for my daughter & cooking so even less would get done than I am doing now.
Do people tend to work with this treatment?
I feel tired all the time. Is that normal???

Hope to get some feedback. My mind is working in overdrive the past few weeks.
xxx

Ashoething Fri 19-Jul-13 08:35:12

Hi lucyelizabeth-sorry to hear you having to go through this. I had the high dose chemo 13 years ago and tbh was pretty poorly. I had to drop out of uni as there was no way I could have continued.

Yes severe tiredness is normal. I also had severe sickness,infections etc-but I think I was a bit unlucky because some of the other girls just sailed through the chemo!

50 for hcg is fantastic though! My levels started at 250,000! Fingers crossed yours continues to drop really fast.

It night help you to hear that I have gone on to have 3 dcs since finishing the treatement.

Please feel free to pm me if you have any more questions or need a chat. All the best.

LucyElizabeth10 Sat 27-Jul-13 23:09:42

Hi
Thanks Ashoething for the pep talk. I need some more advise.
I have just been told that as my hCG has only dropped to 37 from 90 after 2 Methotrexate courses, i should now go on to Actinomycin D via IV in hospital.
Does anyone have advise on whether I will feel ok to navigate London back to Euston and then a 1 1/2hr train journey alone back to my house???
Any advise/words useful.
thanks- am booked in to Charing Cross on Tuesday 30 July...

bam13 Wed 07-Aug-13 11:50:05

Hi All,

Just registered as having been reading all the messages on here and thought I would share my experiences too.

I had a complete MP in Nov 2012, it was our first attempt at pregnancy so was all a bit of a shock to the system. I had the ERPC 2 days later and then my levels were monitored. I was contacted about them going up and had to go in to Charing Cross to start Methotrexate injections on Christmas Eve. It sounds rubbish being in hospital over christmas but the TV on kept me entertained! smile

My first key bit of advice would be to check if you have private healthcare that covers you, say that it is a cancer and is not a pregnancy-related condition otherwise most won't cover you. If you do then you will be on the 15th floor in your own room (assuming they have a bed available).

It is a scary process until you meet the team at Charing Cross. They are the most supportive and understanding group of medical people I have ever dealt with. Being told you are going to have chemo is scary...it's a big word and you will probably find that parents will struggle with it the most, mainly due to the fact that in their generation cancer means something completely different and much more scary. Just keep in your mind that it's curable and the treatment is simply a process you have to go through to get rid of tissues that shouldn't be there.

My levels dropped well on MTX but then started to rise again so I was then moved to the higher dose chemo. That was a bigger fish to fry! The concept of losing my hair took a bit of adjusting to but once I got my head round it (no pun intended) I was OK with it. I had a good 4 inches cut off my hair to a chin length bob to make it less of a transition.

The worst part of the high dose chemo is having the IV drip overnight. Mainly as it stopped me sleeping. Next key bit of advice....TAKE EAR PLUGS!!! With the machine whirring away it can keep you awake, if you block it out it's easier to sleep.

My body responded very quickly to this treatment (I am apparently a freak of science). However my hair did thin alot. I decided to shave it off when I had 1 treatment left. The main reason being that I thought I looked more like a cancer patient with thin hair that I would if I just embraced the bald! smile It was the best decision I made as it was the only thing I could control. My hair continued to thin for 4 weeks after I finished treatment but I'm also pleased to say that now 8 weeks after treatment I have had my first hair cut. smile

You are given the option to not work whilst you are receiving this treatment, this wasn't an option for me. I'm lucky enough to really enjoy my work and the people I work with are very supportive. I went down to working 5 hours a day either in the office or at home. The days when I had IV chemo I didn't go into the office. Working gave me the sense that I still had some normality in my life, that I was still me and not the 'cancer patient'.

This message is much longer than I was intending it to be but just wanted to share my experiences and hope that it settles a few peoples nerves about what they are going through or potentially facing.

Listen to the advice you are given by the medical team, take it easy when you feel tired and stay as positive as you can. I'm a big believer that a positive attitude helped my husband and I get through this and has made us stronger and even more determined to be parents when the time is right.

I'm now waiting to have an AVM sorted, once this is done then hopefully that should be the end of a period of our lives that has been challenging but at the same time (bizarrely) enriching in many ways. smile

LucyElizabeth10 Mon 12-Aug-13 23:37:30

wow-Bam13; your positivity is amazing. I wish I had the same spirit. I am having my 2nd ActinomycinD tomorrow, and I am still fairly emotionally yoyoing. I think this is because I have been away from my husband for 8 weeks (he us running our business in Greece) throughout my chemo and I have our 2 1/2 daughter with me at my parents' house here. All-in-all not ideal.
My hCG is down to 26.... so I am praying that I only have a little while longer until I get to under 5. How long did it take you to drop??

Wednesdayrach Thu 22-Aug-13 23:11:11

All very brave ladies - the human body is officially amazing but can trick us in the most hateful way! I am very lucky as have a beautiful 3 year old x however would be grateful for advice x thought we were expecting again but at 12 week scan told that although signs of a pregnancy the baby hadn't survived. Had medical management which was awful as lost so much blood- had a scan day after as had to be kept in overnight to be told no tissue remained. Went on to bleed for 5 weeks and when I finally went back it was diagnosed as a partial molar and a full evacuation was completed next day. june 25th! I was referred to Sheffield and have been posting samples weekly as initial hcg was 2.02 - last week confirmed back to normal luckily within the 56 days. After evacuation I bled for a couple of weeks stopped for 10 days and then started again - I don't know what it was it was neither the expected period nor similar to the miscarriage bleeding previously. I put a note on the card to the hospital but have not heard anything on this. It's been 4 weeks since the last bleed and I don't know when to expect next period - I know we are all different but what should i expect?

Purplefrogshoe Wed 18-Sep-13 10:01:44

Hi there not sure if this thread is still active, i had mc and erpc 4 july, found out 2 weeks ago it was a molar pregnancy, still dont know if it was partial or complete as tests not back yet, my hcg 9 weeks after erpc is 41 but still have heavy bleeding that comes and goes, anyone have any advice on this? Im due back at work after a 5 year career break and have no idea how im going to cope

Purplefrogshoe Thu 19-Sep-13 09:40:59

;) Bump

juniper81 Wed 25-Sep-13 21:21:24

hey purplefrogshoe. I had a CMP in Jan '11 which fortunately cleared after four months with no treatment. HCG of 41 is brilliant although the heavy bleeding sounds a bit odd. Has it been going on since the ERPC or started recently? If it's recent it could be AF coming back. Do chase up with your centre for results and possibly go to GP to see if they'll arrange a scan to see if everyone is OK.
Best of luck.

Purplefrogshoe Wed 25-Sep-13 23:12:22

Hi Juniper, I'm glad your hcg dropped so quickly, bleeding started 6 weeks after erpc and is still on and off now 11 weeks after erpc, dr doesn't really seem concerned about it although took bloods this week to check my iron levels, tests came back this week and showed it was CMP, I hope things settle down quickly

Purplefrogshoe Mon 30-Sep-13 22:33:34

Anyone around that can advise me on bleeding 11 weeks after erpc?

Missg123 Tue 01-Oct-13 19:35:32

Hi, I have followed this thread for a while but never posted. I had a partial molar pregnancy which was discovered at my 3 month scan in February. I thought I would post as I had a similar problem to you purplefrogshoe and could find nothing online to reassure me at the time. I bled for almost a full 16 weeks post d&c with varying degrees of heavy ness. I was having heavy periods from 6 weeks and in between I bled in lighter amounts. Sometimes my periods were coming only a week to 10 days apart. I often wondered how I was producing enough blood to sustain this!! Anyway to cut a long story short I had a scan which showed a piece of retained tissue that was about 1cm by 2cms. This passed about 15 weeks post d&c. Then within about 2 weeks I finally stopped bleeding and got my negative HCG result (which had been crawling down from 90 since week 7). I just wanted to share incase it helped you. I remember feeling that I must have been the only one in the world who had bled for so long after a partial molar! It also felt at the time that the doctors were not too concerned even though I obviously was! I hope your problem resolves as mine did.

Purplefrogshoe Tue 01-Oct-13 20:56:35

Thanks missg, all ive been told is to wait it will settle down but im going to call tomorrow and ask for a scan as ive had heavy bleeding and pain from Wednesday and its very difficult to manage. Im glad yours settled finally ;)

Missg123 Tue 01-Oct-13 21:41:22

Good luck with the scan. Hopefully they will give you one and it will answer some questions. I think it is the best idea.

MrsH85 Sun 13-Oct-13 19:15:17

Hi, I was diagnosed on Friday with a partial Pre-molar preg - had a SMM at 13+2 weeks after the miscarriage was spotted at my 1st scan. At first I was quite relaxed about everything as my consultant sounded quite calm and as I only bled a little (well less than a normal period) for 2 weeks after surgery with almost no pains so I told myself it would all be fine but now having read a lot more of ppls actual experiences I am starting to worry. I have done a home test today which is negative (its been 5 weeks since my SMM). My bloods were taken on Saturday and I have been transferred to Charing Cross. I know there is nothing I can do until I have any tests results back but it doesn't stop the worst case scenarios playing on my mind!

Purplefrogshoe Sun 13-Oct-13 22:56:59

Hi mrs h, i had complete mp, only found out a few weeks ago, it was 10 weeks after erpc after what i thought and was told was a mmc. It is very good that you have had a neg preg test already, very few people actually need treatment, with any luck you and i will just need 6 months follow up. When do you expect results? My most recent test came back hcg21 so its heading in the right direction

CallingAllEngels Tue 05-Nov-13 08:37:09

Have just read the whole thread after someone on another thread suggested that I might be having a mp.

Had what I thought was a mc at 6w. Was advised by mw to wait a week before taking a pg test. Strong positive (stronger than I'd had at 5w) so had a scan from mw who confirmed no baby, but sent me onto hospital for a 2nd opinion re: tibes and checking there was nothing left behind. Hospital couldn't see anything and took my HCG as 340 (not super high).

I went back a week later and HCG had risen by 100 so had to have another scan. Possible cyst, but no sign of anything else.

I'm going back today for another check of HCG and then possibly a scan and will definitely mention mp.

I have all the shit symptoms of early pregnancy - extreme tiredness, emotional, mild nausea and a rapidly exapnding baby bump (without the baby sad ). If I was pg would be 9w (so 3w since mc).

I hate this uncertainty and limbo and actually feel more scared after researching mp. I had a mc before I got pg with DC1 and it was quick and uncomplicated (2w later had BFN). I hate this feeling of not being able to move on.

squizita Tue 05-Nov-13 20:52:40

Hi Engels sorry to hear you're having such an awful and worrying time. Do mention it to your hospital - if you're not bleeding they may have to offer medical management or an erpc to be able to test for a molar (also, sometimes retained material is very hard to see so this might get rid of your symptoms in itself - I had a 69 triplody and suspected partial mole, hcg spiked but I bled heavily during the time and passed tissue missed by scans so by the date of my Charing Cross appts and that reduced it all to hcg normal over a few weeks).

It is such a worrying time. sad Really hoping it suddenly resolves, as did mine. Maybe ask the epu to check progesterone too - it can hint whether it is retained materials and you'll bleed.

The phoneline at the miscarriage association andf charing x are both really, really helpful too - do use them, they give excellent advice.

Purplefrogshoe Wed 06-Nov-13 00:02:16

Hi Engels, I'm so sorry to hear you are having such an awful time, i had erpc 4 July for what was thought to be mmc but found out 9 weeks later it was complete molar pregnancy, my pregnancy test was still showing strong positive after 10 weeks and I had awful bleeding almost constantly, it a worrying time, my hcg is now zero and I feel so much better, how did you get on today?

CallingAllEngels Wed 06-Nov-13 08:26:10

Thanks for your replies purple and squizita.

Doctor was adamant that it was not a mpg. She said my Hcg is and has been far too low. It had gone up slightly to 450. I have to keep going back every week to check levels and she said it should go down by itself within a month. Didn't give me another scan but in the last 3 there was n8thing to be seen so they won't give me an ERPC. If it doesn't drop then they'll give me an injection.

Reading all your posts thrre is still the possibility that it is mpg though?

Now 3+weeks since mc and still feel so pg. No bleeding - only the odd spot/discharge.

Have decided not to go back into work this week. Physically and mentally exhausted from the last month anx would probably fail to hold it together in class (teacher).

Heading to the UK this weekend to see my family (I live in the Netherlands) and looking forward to a hug from my DM, DSis and best friend.

I guess I just have to wait and be patient, but makes mc so much harder to deal with (last mc was very quick, no ERPC needed, hcg at 0 after two weeks and got pg with ds - now 2 - during next cycle!).

Thank you for sharing your experiences ladies. I've had a look at the mc association website as well which was really helpful.

MN is lovely thanks

CallingAllEngels Wed 06-Nov-13 08:27:06

That should say no bleeding since the mc at 6w (bled then for 3-4days).

Purplefrogshoe Wed 06-Nov-13 10:53:16

It does seem to be taking a long time to drop but at least they are checking your levels, its so difficult though as you just want the mc to be over and to still feel pregnant is awful, i felt awful for weeks and weeks and i couldn't see how i would ever feel better but i do now

squizita Wed 06-Nov-13 19:56:29

My levels were slightly like yours (partial molars can be) but far more likely to be a small amount of retained tissue. Ask for a progesterone check, I also take it they've scanned your tubes (in case of ectopic - very, very rare but they should check!).

If it goes up any more, ask for a second opinion. Moles and partial moles are rare so even gynie docs should seek a 2nd opinion.

NellyOC Thu 07-Nov-13 14:20:17

hi ladies, just found this support thread, thankfully. I'm just sat in my gown waiting to be called down for an erpc with a suspected molar pregnancy. I also had a normal mc in Sept.

Didn't really know about molar pregnancy until Monday when that's what they said they suspected. confused, emotional, lots of questions. Yesterday my hcg levels were 19000, still have sickness, sore boobs etc.

Haven't read this thread yet but will have time after surgery!
all advice welcome xx

Purplefrogshoe Thu 07-Nov-13 14:47:05

hi nelly, its a bit of a shock isnt it, hope things go as well as they can and you get home quickly

mistlethrush Thu 07-Nov-13 16:12:43

My levels took AGES to drop after the 2 mc post DS - 3 months ish - not good when you're worrying about potentially having another mp. They did go down eventually though and I didn't need extra treatment.

CallingAllEngels Tue 12-Nov-13 18:14:17

Reassuring to hear mistle . Have just had another check today and they've gone down slightly to 425 (from 450) so now the same as they were 2 weeks ago.

Back in 2 weeks to check again.

Nelly hope erpc went well (or as well as can be expected iyswim).

Symptoms have almost disappeared - hard to tell if tiredness is caused by HCG or 2yo DS waking up every blinking night and making a pilgrimage to our bed.

mistlethrush Wed 13-Nov-13 08:46:44

Calling - that's good that they are going down, even if it is slowly. I hope that they continue in the same direction - hopefully a bit quicker.

Purplefrogshoe Wed 13-Nov-13 10:17:54

engels thats good your levels are heading in the right direction. I felt very tired for a while but i think it was due to the GA. nelly hope your doing ok

NellyOC Mon 25-Nov-13 13:09:01

Hello, just an update had erpc 7 November. hcg levels dropped from 19000 to 1000 in a week. Thought all ok. Then week later hcg is over 5000. Had a scan showing a mass. Hystology came back as complete molar. Saturday I was admitted to Charing Cross, and I've started Chemotherapy, in here for at least 7 days. The staff here are amazing. Just can't really believe all of this is happening. second dose of chemo tonight.

CallingAllEngels Mon 25-Nov-13 14:40:55

Oh Nelly I'm sorry to hear that. You're in the right place by the sounds of it. Good luck. thanks

mistlethrush Mon 25-Nov-13 14:57:12

Nelly - same thing happened with me too - DS arrived two years and a few weeks after my EDD of the first mp.

Later courses of the chemo I had to up the sickness meds - not really needed on the first round - but one of them that they tried for me really didn't agree with me and they tried a different one for the next course which was much more successful. Also found the mouthwash very helpful.

... don't know if there's anything else that might help but you can pm me if you want to ask anything specific.

tracyto55 Wed 27-Nov-13 09:23:00

I found results from a study, that are encouraging:

This study compared subsequent pregnancy outcome in patients with complete and partial hydatidiform moles. Among 1052 patients with molar pregnancy (complete mole, 801; partial mole, 251) monitored at Chiba University Hospital between 1981 and 1999, 891 patients (84.7%) had spontaneous resolution of human chorionic gonadotrophin (HCG) after mole evacuation, and 161 patients (15.3%) required chemotherapy. Of the 891 patients, 438 (49.2%) had 650 subsequent pregnancies. The pregnancy outcome was not significantly different in patients with complete and partial moles, and was comparable with that in the general Japanese population. The incidence of repeat molar pregnancy in patients with complete and partial mole (1.3 and 1.5% respectively) was 5-fold higher than that of the general population, while no increased risk of persistent gestational trophoblastic tumour (GTT) associated with later molar pregnancy was observed. During HCG follow-up, 10 patients (1.1%) developed secondary high-risk GTT between 14 and 54 months after mole evacuation. The incidence of high-risk GTT in patients with and without subsequent pregnancies was 0.46% (2/438) and 1.8% (8/453) respectively (P = 0.1243). In conclusion, patients with complete and partial mole can anticipate a normal future reproductive outcome, and pregnancies after experiencing hydatidiform mole may not affect the development of high-risk GTT.

Here is the whole info
http://humrep.oxfordjournals.org/content/16/6/1274.full

Purplefrogshoe Wed 27-Nov-13 19:38:26

nelly im sorry to hear that, you are in the best place. how are you feeling?

NellyOC Thu 28-Nov-13 07:46:40

Thanks ladies. The staff at Charing Cross really are amazing. I've had 3 injections now, one more on Friday and then fingers crossed I'm going home! haven't yet heard if my gp practice will give me the subsequent cycles.

Feeling tired and a little sick. Mainly just want to be at home x

NellyOC Thu 28-Nov-13 07:49:35

mistletrush - thanks for your offer of advice very kind.
just one question, 14th Dec my husband had booked a hotel for our wedding anniversary. it's not far from where we live. Do you think I'd be ok to go? I will have just started 3rd cycle. x

mistlethrush Thu 28-Nov-13 09:11:58

I never felt too bad at the start of my cycle - I was probably at the lowest about 3 days after and then started creeping back up. However, I never got back to where I was at the start of the previous one - so each one hit me harder. My cycles all started on a Monday or Tuesday - and I would reckon on having the the Friday and the weekend OK before starting the downwards spiral again. I went into work every other Friday and managed about an hour. Mostly I slept. A lot.

I started off having to go to the hospital for every injection - the first day would be a fullish day as they have to do a blood test first to check you're OK, and then that needs processing before they make up the chemo and can do the injection - I was normally there for between 9 and 10 and not leaving until 4. I was able to drive myself to those (but it wasn't Charing Cross!). For the last 3 or 4 cycles I managed to persuade them to let me take 3 lots of chemo home and get the Drs to do it for me - the Drs receptionists could not get their heads around me wanting 3 sets of appointments over 6 days - and the weekend one was always 'interesting' to book. DH didn't like opening the fridge and seeing the chemo there first thing grin

It wasn't a nice 5 months. But it did the trick, and I'm still here, and I have a lovely DS who is 8.5 ! smile

mistlethrush Thu 28-Nov-13 09:20:32

that didn't really answer did it... I can't say for you though - because I met someone on exactly the same treatment as I was on who was popping out from her work to have her injection and then going back to work, working full-time. She was managing 35 hrs a week... I was managing 1 hr a fourtnight...

lgwilk Thu 28-Nov-13 17:14:39

Hi ladies. Just had my removal op this morning for suspected molar. Fingers and toes crossed. This thread had really helped me get my head around it all over the last couple of days. Thanks xxx

Purplefrogshoe Thu 28-Nov-13 17:22:32

hi igwilk hope you are recovering well

lgwilk Sun 01-Dec-13 16:38:48

Thanks purple frog. Feel ok it's just the waiting to hear what they that's really hard. I'm sure everyone on here has suffered with this. Xx

NellyOC Sun 01-Dec-13 18:06:27

Hi Igwick hope you're feeling ok. fingers crossed your results don't take too long. My histology took 2 weeks. xx

mistlethrush Sun 01-Dec-13 18:12:00

The hospital that did mine didn't bother to let my Drs or my local hospital know the results angry which meant I spent 3 months going backwards and forwards to the Dr complaining about not being right and they kept on fobbing me off with 'it will sort itself out in time'... So at least that won't happen for you!

Purplefrogshoe Sun 01-Dec-13 20:06:36

yes the wait is really difficult, i hope its not too long igwick mistle thats awful, i wasnt told until 9 weeks later, i had been told it was blighted ovum so a real shock

lgwilk Sun 01-Dec-13 22:01:18

Thanks ladies. Blimey think I will be for the loony bin if it takes anywhere near 9 weeks or 3 months. Hope you're coping with it all nelly xx

NellyOC Mon 02-Dec-13 18:25:19

Igwilk -I'd say keep pestering them for your results. I first called after one week.
I've just put together a calender of all my appointments of blood tests and chemo. Feel better now it's been arranged through gp. However I did too much thus weekend and now I'm bleeding again. so I've spoken to nurse at Charing Cross who's told me off and sent me to bed for rest until it stops.
Also it only dawned on me today that I'm on a treatment week through Christmas! Not the Christmas I'd planned!

NellyOC Mon 02-Dec-13 18:35:00

also Mistlethrush thanks for your reply. I thought I'd done a response but for sone reason it hasn't posted. I do this through the app. smile

mistlethrush Tue 03-Dec-13 10:04:54

If I remember correctly, I was off to the hospital on Christmas Eve and Boxing day... I think that was the month the cycle changed from starting on Monday to starting on Tuesday as they didn't want me to come in on Christmas Day!

NellyOC Thu 05-Dec-13 07:07:39

Same here Christmas Eve and Boxing Day x

mistlethrush Thu 05-Dec-13 07:12:37

its not an ideal Christmas - but you'll get through it and you'l be OK.

lgwilk Fri 06-Dec-13 11:49:42

Hope you're doing ok nelly. Thinking of you.

I spoke to the hospital this morning. Was told I should get results in a week which would have been yesterday. The lady I spoke to said there's no way they will be back in a week it's usually 3 weeks and longer if it goes to London for more tests. Grrr I hate waiting. hmm

NellyOC Fri 06-Dec-13 19:47:21

igwilk I hope they cone back soon. I'd call in another week.

Mistlethrush - quick question how many cycles or months were you on treatment?

Just started on cycle 2 today. Just feel tired and have mouth ulcers.

NellyOC Fri 06-Dec-13 19:49:35

Sorry Mistlethrush I've just read it was 5 months. xx

mistlethrush Fri 06-Dec-13 20:17:38

I had 9 cycles I think - have they offered you mouthwash for your ulcers - if not, see if they've got something that might help

NellyOC Fri 06-Dec-13 21:00:18

thanks. I've got the mouthwashes and eye drops. They've just said for me to take the folinic 24 hours after injections rather than 30 and see if that helps. x

mistlethrush Fri 06-Dec-13 21:18:30

It made me feel very tired.. by the end of the cycle and the next 3 or 4 days I would spend most of the time sleeping - managed to get dragged around the park every other weekend.

Purplefrogshoe Fri 06-Dec-13 23:01:21

igwilk I hope they come back soon, nelly hope you are doing ok

sunshineandflowers1 Fri 06-Dec-13 23:45:10

Hi ladies I came across this thread recently as I have had a suspected molar pregnancy. I had my erpc a week ago today so am in the same position as igwilk awaiting my results. I have drawn a lot of comfort over the past week or so from reading through your experiences, thank you all for sharing as I have found this to be quite a lonely experience to date as very few people understand and it's just too much for me to explain at the moment. Wishing you all well x

Purplefrogshoe Sat 07-Dec-13 22:30:15

Hi sunshine it's a real shock isn't it? Hopefully you will get your results quite quickly. It can be very lonely and quite scary but I found posting here really helped as no one in rl understood, hope you are doing ok

NellyOC Sun 08-Dec-13 14:31:46

Good luck Sunshine. I felt emotional the second week after my erpc. when I was waiting for the results and getting over the pregnancy loss. it's only a month yesterday since my op. Fingers crossed your results won't take long. This thread has been great for me. I've been very confused and lonely as know one really knows what it is. x

Purplefrogshoe Sun 08-Dec-13 23:43:44

How are you doing nelly

mistlethrush Mon 09-Dec-13 14:39:49

Just in case it reassures anyone, I saw my friend who is a pharmacist and she said that I was extremely unlucky with my reaction to the chemo and that it doesn't normally affect people as badly as it did me.

sunshineandflowers1 Mon 09-Dec-13 18:56:27

Thanks ladies it's reassuring to speak to others who understand as you're so right no-one knows what it is (myself included up until 2 weeks ago!). Am trying to put it to the back of my mind for the time being and be patient while waiting for results I think I will chase next Monday if i've not heard by then, luckily i have Christmas plans to occupy myself with and I went back to work today which was a little emotional but I held it together and the day went better than I expected which is positive. Thinking of you and your treatment Nelly I hope it isn't making you feel too awful. X

lgwilk Tue 17-Dec-13 12:49:48

Hi sunshine. Any news your end? Nothing here. Has been over 2 week s now hmm

Hope it's going ok nelly and you managed to celebrate your anniversary xx

sunshineandflowers1 Tue 17-Dec-13 14:59:09

Hi igwilk same here although I did call & speak with my consultant at local hospital today who was lovely she said they had done histology there and it had been sent onto charing cross for further testing. From what she was saying it's for confirmation purposes by the sounds of it but she wouldn't commit to anything until results back, she did say it could be a few weeks before they send results back so just trying to put it to the back of my mind for the time being until I know for sure what's next.

It might be worth you putting in another call to your hospital too for an update on timescales and perhaps it may put your mind at rest a little to have an idea especially if you find out they have indeed been send to London for further tests, hope you are feeling ok otherwise it brings a whole bag of mixed emotions and feelings doesn't it? Xx

NellyOC Fri 20-Dec-13 07:55:26

hi ladies
Merry Christmas to you all. Igwilk and Sunshine have everything crossed for you. I hope you can enjoy your Christmas without thinking about all of this.

my HCG levels hit a plateau last week but now they are on the decline again thankfully.

I start cycle 3 today. while I wish it was a different Christmas it is one step closer to this all being over. xx

mistlethrush Fri 20-Dec-13 09:03:04

Going down is good. I was VERY frustrated when mine decided to stick at 7 because by then it was SO close but not close enough!

I hope you have a peaceful Christmas and next year (later on) will find you fighting fit again.

Twym886192 Mon 23-Dec-13 02:41:32

Hi to everyone here,

I'm new to mumsnet and new to the whole concept of molar pregnancies. I hope everyone is doing okay to say the least. I was reading bits and pieces of this thread but do not have any real understanding of the numbers and figures relating to the hormone levels.

I'm 33 with two children aged 11&12. I fell pregnant and was told I miscarried at our 12wk scan. Then a hour later after another scan, I was told it was a suspected molar pregnancy. I never knew a miscarriage could be so painful. So I had my first ERCP days later and weeks later, after another scan, they told me they hasn't successfully removed the entirety. This was back in the beginning of November.

I haven't sent CHX any samples (after 2nd surgery) yet as I have been very busy with my PGCE course at uni. However, after reading this thread, I suspect I should ASAP before they close over Xmas. I feel "normal" but I am till waiting for my period. I often feel a slight jolt of pain from surgery but I assume that it is normal.

I am very touched by the stories on this thread and it's amazing how a group of women with only this in common can come together so strongly - offering each other support, advice and experiences. It's very humbling.
I am wondering how Mrs.DEe and of course everyone that has been affected.

I only wanted to share my experiences with everyone here. I wish you all a happy Christmas and new year. Be strong and have faith x

mistlethrush Mon 23-Dec-13 07:46:41

Twym -I'm now on 6 monthly monitoring. If I don't get the sample in quickly enough I get reminder - you do need to get it back to them, and I'm afraid that any course really needs to make time to sort this out asap (I had to put back my MA by a year).

Twym886192 Fri 27-Dec-13 02:57:52

Thank you mistlethrush. I understand health comes first and I guess I have been avoiding it. I will go to UCLH to and get my blood done.
Thank for your advice x

mistlethrush Fri 27-Dec-13 08:33:09

I hope you get the all-clear - but if you do need treatment, the sooner you start it the better.

NellyOC Fri 27-Dec-13 15:30:59

I second that please get your bloods done. I hope they are all fine. have fingers crossed for you.

Twym886192 Sat 28-Dec-13 16:52:05

THank you. UCLH blood clinic is back open on Monday. I will go then to get it done x

mistlethrush Tue 31-Dec-13 22:03:48

Happy New Year to all - I hope it brings good news to all on the thread - and anyone that joins it.

NellyOC Wed 01-Jan-14 01:43:30

and to you Mistlethrush. Happy new year to you all.

Purplefrogshoe Thu 02-Jan-14 14:16:52

Happy new year everyone! I just got my 3rd 0hcg result! Hope your doing ok nelly

sunshineandflowers1 Fri 03-Jan-14 18:57:02

Happy New Year ladies :-)

Great news purple & also glad to hear your levels are declining nelly :-) I received confirmation today that I had a complete mole so just waiting to begin monitoring now... How are you doing igwilk have you heard anything yet? Xx

Purplefrogshoe Fri 03-Jan-14 23:05:40

I had a complete mole too sunshine when is your first test?

lgwilk Sat 04-Jan-14 08:22:56

Hi sunshine. Glad you got your result. At least they can get on with testing now. Hope it goes well xx

i got a call from the consultant yesterday. The sample has gone to chx for second opinion but it looks likely it will be partial mole. Went into hospital yesterday aft and had scan and blood tests. Also did preg test which was negative so hcg must be below 20 which is goodnews. Scan showed there's still some stuff left behind, also a large cyst on overy. Think I will hear from him on Monday when the blood results are back. Doc suggested that they won't do anything else till results are back from chx.

Feel so much better knowing. The waiting for results is the worst.

mistlethrush Sat 04-Jan-14 08:37:47

Glad that there are so many low results.

sunshineandflowers1 Sat 04-Jan-14 14:09:40

Glad you are feeling better igwilk :-) not sure yet purple they said they need to register me at charring cross and that they will be in touch with me hopefully next week to get things started xx

mrsramskill Tue 07-Jan-14 13:10:34

I had a pm pregnancy back in 2010.
First pregnancy, found out at 13 weeks during first scan there was no baby, which was bloody awful. Booked in for an ERPC the following week which went fine. Was told that they would be sending a sample away for 'some tests' and if I didn't hear anything in 2 weeks the coast was clear.
3 months, yep 3 MONTHS later, got a phone call to say my test results were back, and they were positive. I had just found out I was pregnant again. Needless to say I was furious with the hospital. Apparently results were borderline so they kept needing more opinions which had caused the delay. Just didn't bother to let us know. We had scans at 5, 7 and 10 weeks to check progress and all was fine. DD born March 2011.
Had to send off sample to CHX after the birth, but no further treatment was needed.
Am 7 weeks pregnant again, and despite the odds being against anything, I am terrified that there will be nothing there on the scan. GP suggested turning up at my local EPAU and asking for an early scan citing previous history. Am too chicken at the moment to even do that.
Sorry to read the struggles some people have had with this condition, but glad that there are so many positive outcomes.
Best of luck to everyone.

mistlethrush Tue 07-Jan-14 14:27:43

Mrsr - the hospital I had my ERPC at (same circs broadly) didn't bother to tell my home hospital or Dr - and it was only because I kept on going back to the Dr that I got rescanned after 3 months and they confirmed that there was a problem... The fear that it will come back is the thing that overshadowed each pregnancy (DS plus two further mc) so I quite understand where you're coming from - in fact, it was the 3 months of not even being able to grieve about the mc because of the horrendous 'what if' scenario that meant we didn't try again (my levels took ages to drop each time).

NellyOC Wed 08-Jan-14 08:18:11

I really feel for you mrsramskill. I've not been where you are, but I think I would want to have an early pregnancy scan. I have everything crosses for you as I know what a worrying time this is (2 miscarriages and a complete molar). xx

Thanks for all your thoughts. I'm now halfway through cycle 4 of chemo. Feeling pretty rubbish this time. Really sick, achy etc. But my levels are coming down nicely now 448. Back to Charing X for an appointment on Monday. It feels like the end is in sight. x

NellyOC Wed 15-Jan-14 07:30:19

Had a hairy moment. My levels started to go up. so when I went to charing x on Monday they were thinking of giving my the stronger chemo. They did a rapid turnaround blood test and thankfully the levels came down a little and I was spared. hurrah. how's everyone doing?

mistlethrush Wed 15-Jan-14 07:31:22

i had a frustrating session where mine levelled off - at 7 and didn't come down... They certainly didn't come down in a smooth curve.

lgwilk Wed 15-Jan-14 15:18:46

Glad it's going well nelly.

I got my first testing kit today in the post. Feel a bit scared.

Can anyone advise what their first period was like after dandc please? Sorry tmi. Had light bleeding for 5 weeks or so. Then it stopped for a week and have been bleeding quite heavy for 3 days. It's almost like a normal period though heavier and some small lumps which I assume is the rest of it coming away. Hoping it goes soon and is just first period. Xx

Purplefrogshoe Wed 15-Jan-14 23:56:18

Good your levels came down nelly how are you feeling? Hi mistle
igwilk my first AF was really heavy and clotty but I felt so much better afterwards, I felt really scared too and I still feel anxious when I phone for my results

NellyOC Thu 16-Jan-14 07:42:51

hi ladies, going to phone Charing x for advice. I've started bleeding. but my hcg was over 400 on Monday. I didn't think I could get an af until under 50. so I suppose it could have dropped or could it be the mole? start cycle 5 chemotherapy tomorrow.

Purplefrogshoe Thu 16-Jan-14 16:01:30

How are you doing nelly? My first AF was when my levels dropped to 27 but I had months of bleeding

lgwilk Sat 18-Jan-14 19:39:48

Any news nelly? Thinking of you. Hope it's all ok x

NellyOC Sat 18-Jan-14 20:38:57

hi ladies. Spoke to charing x on Friday. They told me to go to bed and stay there. That if it carries on I may need an embolisation. If it gets worse over weekend get straight to a hospital, if not call charing cross on Monday to discuss. My next levels should be ready by Monday. So I'm taking it very easy. xx

Purplefrogshoe Sat 18-Jan-14 23:07:09

Hope it eases off nelly and you can avoid it ! Fx your levels have dropped, take care xx

sunshineandflowers1 Mon 20-Jan-14 08:19:18

Hi ladies, thinking of you Nelly hope you were ok over the weekend and that you get some positive news today x

NellyOC Mon 20-Jan-14 17:18:40

Hi ladies thanks for your thoughts. I hope you're all doing well. I'm back in Charing X on 100% bed rest after a big bleed this morning. Here until at least Wednesday. x