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Anyone taking part in the Response Medical Trial or any other medical trial?

999 replies

sizethree · 17/01/2015 17:00

Hi, I'm taking part in the Response medical trial and wondering if anyone else on here is too?
It's been a very difficult year and a half and I have had three consecutive miscarriages, 1st in Nov 2013 at 12 weeks, 2nd in July 2014 at 7 weeks, 3rd in Nov 2014 at 9 weeks. It's a 4 month waiting list for my Recurrent Miscarriage Clinic so I'm taking part in the trial as want to keep things moving as worried I'm running out of time (I'm 36 this year - although I was 33 when first started TTC) but I'm in the 2WW and feeling terrified.
There's a lot of extra support offered as part of the trial but I'm feeling a bit lonely and out on a limb about it.
Anyone else on the same boat or had medical trial experience?

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clairemorgan81 · 13/04/2015 20:18

girlie I have just been thinking exact same thing on some of the tests I can't see anything?? ahh what's going on

girliesaints · 13/04/2015 20:22

Glad it's not just me Claire. Feel a bit of a failure for finding it so hard to get each test right!

clairemorgan81 · 13/04/2015 20:32

definitely not just you. my tests have been whiter than white so I dont think I'm missing anything unfortunately......

LouiseM1987 · 14/04/2015 08:18

Congratulations meemsmum what have your response nurses said.. Have you arranged to go in yet?

What a lovely scan pic choccy :) when do you go dublin ?

I'm having second thoughts about the trial all I keep thinking Is have any babies been born yet and what if they have problems... Please dont get me wrong there is nothing wrong with problems but everyone would like a healthy baby :( I don't know what to do. If it's my only chance of having children I have to do it don't i ? Sorry just freaking out as my miscarriage was only last month and scared it'll happen again
Hope everyone is ok ? Xx

clairemorgan81 · 14/04/2015 08:28

I must admit Louise I felt the same I had massive doubts due to not knowing if there would be any effects on baby but I figured its worth a try, totally get where your coming from though x

girliesaints · 14/04/2015 09:19

I had the same concerns but took comfort from the trial literature that there were no reported side effects in babies and only two birth defects. It went on to say that there was no evidence linking the drug to the birth defects (I.e could have seen the same defects with mothers that didn't participate in the trial) If you do have any concerns I would suggest speaking to your trial nurses. They may either reassure you or help you decide if the trial isn't right for you.

I am clearly obsessing about testing as had a dream that I did a digital test and it first said I was pregnant and the result changed to negative! Don't have to be a genius to work out I'm stressing about it!

Indiedog · 14/04/2015 09:50

It is a big step to take, and it is a trial. But I seem to remember being told its in its fifth stage now, and that the drug is already used in cases of IVF.
If your having any doubts, it would be best to speak to your trial nurse.
Also, try and remember, it's 50/50 as to getting the drug or placebo.
Either way, I am now getting extra support and reassurance with my first scan today. I could be on the placebo, and for all I know it could be more mind over matter than having the drug.

I have my six week scan today, and I am absolutely bricking it! Think I'm worried that it will have stopped growing, or they won't see a heart beat yet!
Scan is at 11!! Keep everything crossed for us!

girliesaints · 14/04/2015 10:05

Good luck Indiex

clairemorgan81 · 14/04/2015 10:29

best of luck indie x

clairemorgan81 · 14/04/2015 10:45

girlie I dreamt Sunday night I had a positive . I hate this testing carry on. definitely downside of being on trial for me. I hate it

girliesaints · 14/04/2015 12:53

Totally with you Claire but hopefully a short term frustration!

Meemsmum · 14/04/2015 12:55

Good luck indie! X

I'm just waiting to hear back from my trial nurse to confirm when I've to go in. Tomorrow or Thursday probably. Took another test last night and line was definitely darker, but then this mornings, using fmu, was super faint again! I'm not getting my hopes up at all. I'm really not that comfortable testing so early, just scared of a chemical I guess.

Philippa, how are things with you today?

Choccy, has your sickness subsided at all?

Waves to everyone else Smile

Indiedog · 14/04/2015 12:59

Well, let's just say there was the odd tear of relief when the nurse turned the screen, and said yep there it is, and with a little heart flicker too!
That's what I was dreading, not seeing a heart beat.
She measured it as the correct size to for six weeks.

So I have my first little picture of my bean! But I'm still not going to get complacent, as far as I'm concerned I've still got a way to go!
Two weeks worth of syringes now, so no appt next week, which will be strange. Next appt will be for the 8 week scan.

Hope everyone is ok xx

girliesaints · 14/04/2015 13:19

Glad to hear Indie it went ok.

girliesaints · 14/04/2015 13:20

Meems- keeping my fingers crossed for you x

sizethree · 14/04/2015 13:21

louise it's completly understandable to be having those worries. It shows you're not going into this without addressing all the possibilities. But the other ladies gave some great advice.
Just take the time to make the decision that is right for you, with all the information you have.

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sizethree · 14/04/2015 13:24

Delighted for you indie. That's one milestone reached. Phew.

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philippa88 · 14/04/2015 13:34

Wow indie that's brilliant news!!! Grin Bet you're feeling so relived :)

I too was worried about any after effects of the trial on a baby. Like others have said though, research seems to say the majority of babies have been perfectly healthy. I'm willing to try anything, I really am.

No heard back from the research nurse yet but I'm sure she'll ring when she has more info.

Still no witch though and no signs of her arriving anytime soon! Ive read up on anovulatory cycles but can't seem to find any solid facts. Will I just have a cycle as if I had had a bleed? Or will I have to wait for the bleed to happen to 'reset' my cycle? It's very confusing and feel at a total loss with it. All I can think is possibly stress may have had an impact - I stopped using opks many moons ago as they did stress me out. Then when I started using them for the trial, I kept getting an empty circle so stress may have been increased. I literally just want to have my normal cycle back and be able to try.

Anymore smileys or bfp's on the horizon?

Xx

philippa88 · 14/04/2015 14:25

I'm sure they can sense when I write on here!! Just spoken to the nurse and the consultant has said to not worry at all. She's thinks it's an anovulatory cycle and it's perfectly normal to happen 1-2 times a year. She said until I bleed, to have protected sex (not sure why!) and that next cycle will be a fresh one what I can treat as any other cycle. She says it's normal and just something biologically that they cannot explain. Also, I have to have my bloods done again as my lupus test was slightly elevated. She said the results are marginally higher but that if I did have lupus, that the levels would be significantly higher so I don't have it. She's even going to ask the consult to explain the levels are insignificant since they are so low and that I shouldn't need to have the test repeated. Have to go back on Thursday so will see what happens! Xx

clairemorgan81 · 14/04/2015 16:05

philippa I'm pleased they have put you at ease and good news about lupus results. is that the blood clotting one? I've just had that one repeated as the results haven't came back and the original ones were taken in Feb.

no bfp for me so losing hope for this month

philippa88 · 14/04/2015 17:31

There's still time yet Claire! Don't rule yourself out!

Lupus is the auto immune one, where the body attacks the foetus :s

I'm feeling alright at present but I am praying af arrives soon. Hopefully the next egg I release is a big juicy fat one lol! X

girliesaints · 14/04/2015 18:48

Claire keep the faith, it's still early and every day counts until AF arrives.

Philippa- glad to hear you got some good news x

LouiseM1987 · 14/04/2015 19:39

Such good news indie :) where are you based ?
Thanks ladies for the reassurance Im going to stick it out as if it's my only chance id rather take it and hopefully have my little one then not at all !
I've never heard of that sort of cycle Philippa but at least you've had the info from the consultant and hopefully you won't worry (even tho you still will :) ) xx

clairemorgan81 · 14/04/2015 20:05

I know it's early days but the nearer to af I get the more disheartened I'm feeling. I wonder when you should def get a positive ? probably day af due or day after? I'm driving myself and dh mad!! good luck to you too girlie.....any symptoms?

glad today went well indie phew what a relief x

girliesaints · 14/04/2015 21:35

Nope no symptoms here ??

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