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Original poster

RESPONSE trial thread

984 replies

Marchgirl · 04/05/2015 19:50

For anyone who had joined or is thinking of joining the RESPONSE medical trial for recurrent miscarriage

OP posts:
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17
clairemorgan81 · 13/05/2015 11:45

forgot to ask so are you continuing with testing this month then that's it for response March? Any symptoms yet?x

Original poster
Marchgirl · 13/05/2015 11:59

Yes, just continuing testing anyway claire. "I've started so I'll finish", as they say. Tiny bit of spotting last 3 days is all. Nothing else. Last pg i guessed from symptoms by now, even though no bfp for another 2 days, so not hopeful.

OP posts:
clairemorgan81 · 13/05/2015 12:02

ooh spotting is a good sign March!! when's af due? it might be implantation x

girliesaints · 13/05/2015 12:08

So I'm back from the scan with mixed and therefore inconclusive news. Egg sack has doubled in size but still small and can't see anything inside. Revelation was that there is a second slightly smaller sack (!) So the presence of the second egg could be the reason for the small measurement or still a reflection its not viable. So got to have another scan next week to hopefully get a better idea what the hell is going on.

Original poster
Marchgirl · 13/05/2015 12:12

Gosh girlie, how confusing and also stressful to have to wait another week. Really hope the news is better then xxx

OP posts:
sizethree · 13/05/2015 12:22

Goodness girlie that is such a head f**k. (Sorry for bad language, can't find a more eloquent way to express it) That's a lot of information to take in. Hope you're feeling ok. And super hope this next week goes turbo speed fast for you.

clairemorgan81 · 13/05/2015 12:22

wow girlie I bet you dont know what to think!! I hope you get the news you want next week

girliesaints · 13/05/2015 12:31

I think everyone in the room was speechless to be honest. At the moment not sure what to think. The sacks could be growing just due to hormones but the biggest is still only 9mm, so they've advised its not surprising not to see more at this stage, so equally could be viable. Total headf**k so reverting back to Ostrich in the sand approach for next week! I've also apologised to the trial team as I think I'm going to be their problem lady!

clairemorgan81 · 13/05/2015 12:37

if its 9mm what gestation would that indicate do you know girlie?x

girliesaints · 13/05/2015 12:44

Was also impressed that the Response team had lined up the recurrent miscarriage clinic nurse so I could see her today if the news had been bad. Although didn't end up seeing her, did give me further confidence that you are looked afterwards if things do go wrong

girliesaints · 13/05/2015 12:50

Who knows! Still being counted as 7wks for trial purposes and continuing on the trial for moment. Bit annoyed as the orginal sonographer advised it was small growth so me, dh and trial nurse thought it meant it was definitely not viable, so I was discussing about when to hand back my trial kit. I then saw a more experienced nurse who advised about the actual growth and that it wasn't necessary bad news. Full roller coaster of emotions!

Kazz2112 · 13/05/2015 12:52

Oh girlie that's so frustrating! Bit fingers crossed there could still be some good news. Thinking Of you this week. Must be so tough.

LouiseM1987 · 13/05/2015 12:55

A complete head f**k like size said.
What day next week is your scan ? Hoping next week is good news xxx

Choccywoccydodah · 13/05/2015 13:09

Oh girlie, fucks sake! (I just say it sorry!) It may just mean little one implanted a bit late properly therefore hasn't grown as much as you thought. But to be told come again next week is just nuts! I would've thought they'd have you in in a couple of days! And a second sac, does that mean a twin possibility? Sorry you didn't get the answers you wanted today my lovely.

Re the nk testing, I think you can have it done at St Mary's in London.
The reason it's not all over the country is because only 3 professors countrywide are behind testing it. There are 2 in Cov (Quenby and Brosens) and 1 in London.
It's not a trial like this one, it's just professors who really believe in finding a cure, so they set it up basically. It's not backed by the NHS yet fund wise, but hopefully once the findings are in favour, it'll be offered. Prof Q used to be based in Liverpool, it's only recently (I think in the last 8 years or so) she's come to Cov x

girliesaints · 13/05/2015 13:12

Yes it does Choccy. Not even thinking about it until I know what's happening. Nice guidelines are to wait two weeks so at least it's only a week

clairemorgan81 · 13/05/2015 13:17

you ladies know so much about stuff on here. its great that yous have so much info, thanks choccy. just sorry that you 've had to go through so much crap to get it.
its all quite confusing so is the response drug following their research?cos that's for same thing?x

Indiedog · 13/05/2015 16:15

Wow, I've had some catching up to do!!

Sorry if I get anything wrong, I have a head like a sieve.

It's a shame that the tests you are talking about is done in such few places. As someone said, postcode lottery springs to mind.
Hopefully if these profs get more women tested, and can show some success rates in the treatment then others may have to stand up and take notice.

I think some of your are wise saying about delaying testing for BFPs, if it does cause your so much anxiety etc. The added stresses can't be good. I think I must be such a laid back person I'm almost horizontal!!!! I learnt to deal with a lot of stuff on my own at 21 when my mum passed away, so I think from then on it was either I get on and deal with stuff or I will get myself down. My husband is also very matter of fact in that what will be will be. Don't get me wrong, he was amazing when mum passed, he didn't run a mile!!!! But as a typical bloke he is as much use as a chocolate tea pot when it comes to talking about emotions or how we are feeling!!! Gotta love him Envy wouldn't swap him for the world.

Anyway, I get sidetracked, the OV testing and HPT is stressful, and if delaying HPTing for a few more days helps then just do that.

Girlie, I am gutted and amazed at your scan today. You must be in such a confused state of mind. Mine would be running away with me now!!! Forgive me if ive got it muddled, you have two sacks, one slightly smaller than the other, But still not sure if they are showing anything inside? Did they give you any idea what it could lead on to, have they seen anything like this before?
Why is nothing straight forward Confused

Keeping everything crossed, for everyone, for everything thing. Xxx

LouiseM1987 · 13/05/2015 16:56

How are you holding up girlie ?
I'm sat at my acupuncture for my last little bit of hope and luck x

LouiseM1987 · 13/05/2015 18:30

So sorry about your mum indie :( xx

Joy2713 · 13/05/2015 18:31

So had my 2nd second scan (the 1st was yeaterday and they saw nothing) well today there was a sac and yolk sac and the epu said it was exactly what she would expect to see at this stage! Response team were literally gobsmacked! She said that was really not the outcome she was expecting! No more epu just normal 8 week scan next xx

LouiseM1987 · 13/05/2015 18:34

Joy that's brilliant news ! Yay !! I can't believe how much difference one day makes ! You've given me so much hope !!

Are you 6 + 1? :) xx

philippa88 · 13/05/2015 18:39

Oh girlie what a day, you really must be going through so much in your head. I don't think I'd be able to cope but I guess you don't know till you're in that situation. All we can do is hope and pray for you, I really hope the next week flies for you.

I think I'm going to test on Saturday morning, not holding much hope right now although I have been having 'stabby right pain' as I call it. It's similar to ov pains but much less frequent.

Is it me or does anyone else wish they could just see what's going on in there? Like have a home scanner or something? The mind boggles.

I saw on 'This Morning' today a part about miscarriage. It's some woman who I think is a miscarriage ambassador or something. She had a mc, then a daughter, them a further 3 mc's and she was talking about how women blame themselves. It's so true, she was saying things that I've rationalised in my own head. Did I lift something too heavy? Was it that pate I ate last month? Crazy.

This months cycle will determine whether or not I'm pregnant for our holiday to Tunisia in 3 weeks. I'm setting myself up to think that if we're not pregnant, we can have a bit of a wild 'fuck you ttc' holiday, whereas if we are, then it'll be a relaxing break where I can just chill out with no stress. It's swings and roundabouts, although I do worry about finding a fridge for the injections at the resort etc.. I don't know. I'm waffling now! X

philippa88 · 13/05/2015 18:39

Oh and good news Joy! X

girliesaints · 13/05/2015 18:47

Oh wow Joy that's amazing. Was J with you? She was with me and had the same response about my scan. Bet she was thinking what next from the Trial!

Joy2713 · 13/05/2015 18:58

When is your scan Louise? It's been such a roller coaster 24 hours! Didn't see hb but they didn't even mention that so guessing that wasn't an issue!

Yeah was J, when's your next scan girlie?

Fingers crossed for a bfp Phillipa xx

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