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.

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.

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