Molar Pregnancy

[KittyCatherine]

Hi..
I don’t really know what to do on here, I’m looking for any help/advice.
I was diagnosed with a molar pregnancy in December 2021, I’ve had 2 blood tests sent to Charing Cross since being told about the molar.
My hcg was 700,000 upon finding out.
My first bloods came back at 1,911 which was a significant drop, however today they are now 3,571..
I’m so frightened about it all.
Has anyone else experienced this? What happens next? They said to me they will send out another box and bloods will be tested again a little earlier than the 2 weeks.
Thanks in advance for any help ♥️

I'm so sorry for your loss and what you're going through. Molar pregnancies are so rare that you may not get an answer here - I had a molar last year but it was only a partial molar and luckily my HCG dropped steadily.
There is a great Facebook group where you can get lots of support from women going through the same thing. I think it's called My Molar Pregnancy Support group.xx

Hello, as @Tinpo said molars are so rare that support is hard to find. I wish the Facebook group was around when I was diagnosed.
I had a molar pregnancy in 2010 and needed high risk chemotherapy, this is even more rare so try not to worry.

It’s such a worrying time, have you spoke to Charing Cross? I found the ladies on the end of the phone so helpful, kind and informative. Also the consultant (when I was having treatment were very kind and honest with me, answering all my questions).

My levels were over 800’000 when diagnosed, I used to be able to remember my numbers/pattern which I would have shared. I think (and I could be remembering this totally wrong ) but sometimes hcg can rise a little before going down. They look for the pattern in hcg going up before treatment is started. I am sure mine went up a few times before I began treatment, I started on metherexate, this worked initially then my hcg went up again, so I moved on to ema-co.
You are welcome to message/ask questions although my experience was over 10 years ago so things may have changed, also try to remember that needed the chemotherapy especially the high risk treatment is really rare and most people just need the monitoring like tinpo.

I have gone on to have two healthy pregnancies with no issues conceiving. 💜

Thank you for this ♥️
My levels have gone up again to 3,900.
So they were 700,000 then went really far down to 1,911.. then went to 3,571 and now gone up again to the 3,900 😔
I had so much bleeding with clots on Sunday, it was very frightening.
I have to go to Charing Cross tomorrow, she didn’t say why exactly, Said they will do some more blood work, they may start treatment they don’t know yet but if they do I will be there for a week.. it’s just so much to take in.
I live in Devon and being away from my kids is going to be the absolute worst, I have 2 sons, one is 13 and the other is 2. I don’t know what I will do without them, my toddler isn’t going to know where I’ve gone and I’m so sad that I have to leave them.
The thought of being alone and terrified has just increased my anxiety to the extrem 😔

O Gosh you poor thing how scary.
From what I remember when starting methotrexate, I had very heavy bleeding with clots as you describe, I was then told to go to Charing Cross, I had more bloods, my levels had gone up again so I had to start treatment.
I started methotrexate, this was the low risk treatment and from what I remember it’s 1 day injection next day rest (with a tablet) for 8 days (so you have 4 injections per cycle).
This was over ten years ago so may have changed.
I had to stay in Charing Cross for the 8 days of the first cycle of treatment but after that the nurses in my gp surgery were in charge of giving the injections so I didn’t have to go to london. I was living in dorset, so it was quite a way (I now live in cornwall) so can understand how far it is to travel.
They were really understanding with me getting to and from the hospital for appointments.

You won’t be alone, I met some lovely ladies on the wards, the molar team came to see me; they had a tv room a room with jigsaw puzzles, a piano in the main area. 💕

I’ve just gotten off the phone to the lady at Charing Cross, I will go there tomorrow, she said they will do bloods, ultra sound and an X-Ray… if my levels have gone down I can come home and still do the monitoring but if they’ve stayed the same or gone up then I stay there for treatment which will be a week.
I’m so so sad to leave my children 😔 I’ve never really been away from them and I worry that they will think I’ve just left them!
I will make sure I pack plenty of my Stephen King books 📚 to keep me occupied whilst there.
Thank you for you responses ♥️

Just wanted to offer you a hand hold. I had a partial molar in 2005 abs wish the FB group had been around then although I did get some support on here.

Hope tomorrow goes well for you.

Thank you so much 🥰
I will update tomorrow when I know what is happening.

Hey, just checking in, hope today is going as well as it can be?

It’s been such a long day!! Left where I live at 5am..
Honestly today has drained me! I miss my boys so much it hurts 💔
I have to stay here and start treatment, my hcg levels came down but not enough 😔

So sorry to hear that :(
It’s good that they come down though, and hopefully the treatment will really kick ass and get it down as quickly as possible.
Hopefully you are able to FaceTime your boys? You are getting better for your boys, although it’s hard now, and it’s Truly shit being away from them, you are doing this so you can have many happy fun years together.

When I was in Charing Cross they had just opened a Macmillan centre, it was at the front of the hospital on the left hand side (as you look at the hospital). If you need support that was a great place to go. Even if you just need quiet time away from the ward.

When I started my treatment I was on 7 south e bay bed 1. I had the kindest nurse, who took me to one of the windows and showed me all the london sights (I was a proper country bumpkin, still am) I am pretty sure you can see the London eye. I love the London skyline.

I don’t know about covid restrictions/how you are feeling, but I always used to go off shopping/exploring (when having ema-co). If you are able it’s a beautiful part of London.

Thank you so much for your message 💖 It’s so lovely of you to reply.
I’m on 6 South, Bay E, Bed 1!!
Awww yes I went over to look out the window at the skyline.. amazing all lit up!!
Yeah I never thought I would miss Torbay as much as I do now!! Definitely appreciate it much more.
My boys are doing just fine, I miss them more than ever but I will be back with them soon ♥️♥️
I’m having the folinate tablet at midnight tonight then the methotrexate injection again tomorrow, it was fine having it yesterday although they did say the more I have it then I may start to get more tired.. and they said about the other side effects but they’ve given me mouthwash and eye drops.
The Macmillan centre you mentioned is now something called Maggies, a building to the side of the hospital, they said that it’s really nice in there and relaxing, so I may go there tomorrow to see.
I will keep this updated.
Thanks again for the message 🥰♥️

Had my 2nd injection of methotrexate today, really hurt my ass cheek this time!!

I typed a long reply then my phone ran out of battery. So I will try to remember 😅

Glad your treatment is going well (although not good the injection hurt).

Make sure you use the mouthwash, my teeth are now terrible after the chemo, on ema co I had terrible sickness and would brush my teeth straight after being sick. Ruined the enamel.

Did you go to the maggies centre?
How are your boys coping? Hopefully you are coping, so tricky not cuddling them.
When do you have your next hcg taken?

Hopefully you are still feeling well, are you now half way through your stay?
Do you have any advice regarding covid and your immune system? Hopefully your work is supporting you? 💜

Hey
So so sorry for your loss.
I had a partial molar in Jan 2020.
Hypermesis too which is a classic sign. I was so sick I actually thought I was going to die. It was mid covid so I wasn't offered a D&C, I had to 'birth' the whole foetus/placenta. I found out a few weeks later that I had retained tissue and ended up at Charing Cross- think the ladies name was Amanda who was on the reception staff. Weekly blood/pee tests. All came to a final conclusion in Aug 2020- 5 months after my scan.

It was just the saddest thing and even now I'm not sure I've ever really made my peace with the process.

I fell pregnant in Jan 2021 and we had our beautiful girl in September . The road is long but there can be light-

Xxx

Hi Chillyjam 🌸
Sorry I’ve not replied until now. I have been spending time with my family and haven’t been on my phone much.
I’m back home, got home around 7pm on Tuesday 15th Feb, 6 days off treatment then my local hospital will continue the treatment.
It was so emotional being back with my Boys.. oh how I had missed them!
They had been absolutely fine with their Dad but I’m just so happy to be back with them all ♥️

I’ve been using the mouthwash and the eye drops, I’ve not had any symptoms other than tiredness.. feel like a kitten 😂
I will ring Charing Cross for my hcg level, they didn’t have it when I left, they said 48 hours so it will be done now.
The nurses were so lovely, like amazing! I’m missing them!!
Hope you’re well ♥️ Thanks again for messaging, your messages always made me smile and made me feel not alone. 💖

Hi GCG1🌸 Thank You so much for your message.
Sorry to hear you also went through a molar pregnancy.
So lovely that you went on to have a healthy pregnancy and now have a beautiful daughter.
It’s a long road ahead for me but I’m staying positive for sure. 💖

Hi kitty, when you say 6 days of treatment, what does that mean, chemo? I spoke to a Dr yesterday after a confirmed incomplete miscarriage who told me a 'possible molar' and have got to repeat bloods and another scan but surely they'd know already!? I'm really quite scared. Thank you

@Putdownthecake Hello 🌸
Yes I mean chemo for the treatment.. I’m now on a resting week then I start the 2nd cycle again on weds.
Sorry to hear about your situation, Awww don’t be scared, hopefully everything is okay, fingers crossed for you.💖

Oh you poor thing, I hope you're not feeling the effects of chemo too badly? I do hope so. I have more bloods Saturday and another scan Friday so hopefully I'll have some answers soon. Is it diagnosed quite quickly? Wishing you a speedy recovery X

@Putdownthecake Awww thank you 🌸
The effects aren’t too bad, mainly tiredness. I have been given a mouthwash too incase mouth ulcers happen, also eye drops because the dyes can become dry. But I’ve only been having tiredness 😴
It’s methotrexate injection every other day, and folinic acid 30 hours after the injection.
It doesn’t cause hair loss as it’s a low dose.
Yes it was diagnosed quickly to me, On the day I went in for a scan, then they did the D&C that very same day.
Wishing you all the best 🥰
Let me know how you get on. 💕