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

[sizethree]

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?

Yiu just made me laugh out load in the bus home with that Dolly joke!
I remember getting big boobs wuth the first pregnancy. Such a shame for DH as they looked great but where too sore to touch. Must've been torture for him!
I feel a little better today as got through work and now I just off to relax and home and try aff get an early night. Whatever will be will be. I've coped before dvd if it's not the news I want, I'll just have to brush myself down and cope again. There's a mindful resilience you are forced to learn in our position I think.
Glad you're on the mend Choccy, and that boiled sweets are helping.
Just s couple of days off the POAS party Claire.
What a journey so far!

I'm not looking forward to starting testing to be honest......I feel like I'm going to feeling disappointed especially doing them so soon.
you have yourself a lovely relaxing night x

Hope you manage to sleep tonight sizethree!!
And yes I do feel sorry for our men and the boob thing!!

good morning sizethree lots of luck and love for today hope you managed to sleep last night. let us know asap xxx

Thanks Claire, I didn't get much sleep as I'd anticipated but the day is finally here.
I'll let you both know as soon as I can.
Thanks again for all your support.

Morning! Thinking of you size three

All is ok so far. Measuring fine for our dates and little heartbeat seen. (We didn't look but midwife and ultrasound technician happy) Just a long 2 weeks ahead til next one. X

super news sizethree best you can hope for at this stage.xx

Yeeeeeeeeeeeeehaaaaaaaaaaaa!!!!!!!
You lucky buggar with no symptoms!!! Xx

Thanks you two. It was a bit of a surprise to be honest. But I'm still not getting my hopes up as it's still a long way til my 12 week one. Got 2 days from it the first pregnancy, so won't be able to relax or feel this is real for a few more weeks. But hopefully I'll actually get some sleep tonight.
Yes, still no real symptons. Got a bit fussier with my food this week and can't get enough of ham sandwiches. Strange I know!
Choccy you're back in on Tuesday for your 8 week scan aren't you?
Claire are you getting reading for the POAS starting tomorrow morning? When do you usually get a positive? On the day you're due on or ever before?

hopefully the extra scans will help you but totally get how you won't feel better until after 12 weeks.
you 'll be shattered tonight. get yourself a ham sandwich and have an early night

I'm off work tomorrow -presume fmu is best? I've never ever tested before period due so dont know x

Yes, FMU is the best as if there is HCG present, it'll be most concentrated in the morning (when you haven't been drinking overnight so are a bit dehydrated).
You have the patience as will power of a saint!
I'd never tested a whole week before period was due but I definitely caved about 2 days before sometimes.

Morning ladies
Hope all is ok! Any joy yet Claire??
Yes FMU is def best, oooo I do hope you get a Mother's Day surprise if not before!!

How are you feeling sizethree? How's your ham sandwiches? That sounds a good sign!!

All ok here.
Felt better sicky wise over the last few days, however still congested.
Went to get some shopping yesterday as have friends here for the weekend, arrived yesterday. I almost walked out of the shop as I felt so ill and sick, I was bent over the trolley pushing it. Phoned DH and he told me to just leave it but it needed doing.
Made myself sick last night and felt so much better for it! Not the ideal thing to do I know but I just couldn't go to bed like I felt.
No questions from our friends yet and doubt we'll tell them if they don't ask.
Can feel stretching and stuff going on this morning, and was up EVERY HOUR last night for a wee!!
Roll on Tuesday!!

Anything planned with you guys this weekend? Xx

How are you both getting on?
Claire, have you relieved information about the pathology of your third MC?
I had an awful time yesterday at my recurrent miscarriage clinic appointment. I'd waited 4 months for it and decided to go even though I'm currently pregnant, as a precautionary measure in case this pregnancy doesn't go to plan. I went by myself and the knowledge I had before it was that is received a letter in December saying that the initial results from the pathology came back showing no chromosomal abnormalities.
So I got quite the shock yesterday when I went to the appointment and I was told they picked up a rare chromosomal balanced translocation in the pathology afterall and that my husband and I need to go for full karyotyping and genetic comcilling as it's likely to affect future pregnancies.
I mean WTF? If I'd had this information before I would have not tried to fall pregnant again and i'd have postponed the trial.
Now I'm shitting myself even more that I'm going to imminently miscarry /need a TRMR or give birth to a baby not compatible with life.
Very angry about it and feel like they should have contacted me much earlier, as soon as this information came to light. To give me the opportunity to make an informed choice prior to my next pregnancy.
The results of these tests take 6 weeks. So that's going to make this waiting even more painful.'sorry for the rant but I just feel so deflated that things really are constantly going against me and I've already been through so much heartache that is hoped this trial would be a good opportunity yet I've been thrown this awful curve ball which makes everything awful again.

X post sizethree!

Omg that's truly just awful!! Why did they wait for the appt to tell you this as surely they knew you were ping to carry on trying. I am absolutely shocked tbh, surely that's negligent on their part!
What did they say when you told them you were pregnant (assuming you did)?
Can they test the baby while its inside you. I just can't believe this, you've been through enough and now this worry!! Wankers, total wankers!

I told her I was oregnabt and she knew from my notes. She had an awful bedside manner which didn't help. And she seemed pretty snooty spit the trial. They took ll the bloods they took for the trial again, to test clotting, thyroid etc, which I know I don't have issues with. And seemed kissed off I'd come alone as my husband needs tested too. But the letter said nothing of needing I'm to join me not ANYTHING about genetic issues.
Honestly, I was clearly upset. How she thought it was acceptable to make a pregnant woman cry is beyond me. I wish I didn't have this information. It is of no good in my current situation.
Yes, I'll have to get amnio /CVS if I get that far into the pregnancy. Something I never would have chosen to do as it carries a mc risk.
I mean my third MC was back in November. My letter came early December. I've waited a third of a year for this appointment and it's so unfair that now I'm pregnant again they choose to hit me with this terrifying info now. Yeh thanks.
Sirry, I just don't know what to do. I think I'll post a thread in the MC section to see if anytime else has experienced it. Being described as 'rare' is even worse.

What a complete and utter bitch!!! Can you make a complaint??
How can someone be so heartless when they know what you've been through and to top it all off you're now going to have an extra thing to worry about through your pregnancy. Why can't things just be easy?? Just as you were feeling anxious already they now slap you with this.
Sweetie I don't really know what to say, wish I could just give you a big fat squeeze right now.
What did your dh say? I bet he's fuming!!

Yeh I thought she was investigating harsh.
My DH is very upset he didn't go with me. But as far as we knew from the letter there was no need for him to.
He tried calling and left a message yesterday as he wanted to speak to her to clarify a few things as I was obviously upset when I told him what had happened. But he left a voicemail and she didn't return the call. So will chase on Monday.
I called my trial manger who was not as the hospital. But she was very comforting and although she said she doesn't know much about these sorts of things, she said she'd find out and get in touch next week and offer interim scans as I was clearly super anxious.
So I feel at least she has some compassion and concern.
I guess I just need to wait it out. It's out of my control. Whatever is developing has already got its genetic makeup and I can't control that. I just have to prepare myself for even more future heartache. And I think I definitely have grounds to complain. Surely this is medical negligence. At no point was I informed to not get pregnant again. Yet yesterday she seemed pretty non plussed that I was and very weary about the whole thing. Which is the worst possible experience as a patient.

Oh my goodness sizethree I'm so sorry I can't believe this. I don't think my hospital send a letter if all okay and I had my recurrent miscarriage clinic appointment about a month ago she didn't mention anything about any pathology on any of mine? So I presumed nothing was found.
so did the horrible woman say it will definitely effect future pregnancies? Is it somethung they can treat do you know? I'm so sorry your going through this on top of everything else. she sounds dreadful. I'm pleased your trial manager sounds supportive and lovely and is getting you info.....surely you should have been told sooner.

negative test yesterday am brown spotting pm so I'm out x

A big fat FUCK for both of you. Life is so fucking harsh sometimes!
I just really really hope that despite the odds, that little one you're carrying sizethree is perfectly healthy.
For fucks sake, so pissed off for you having to deal with this x

It's just a big shit sandwich. So sorry Claire. What an awful 24 hours for us two.
Hope Choccy is keeping up some good news. We blooming need it.
It's all very confusing and frightening.
I called my Response trial manager after I'd seen the recurrent miscarriage clinic Dr, as I was worried that it would conflict with the trial. As it seems my losses haven't been to do with implantation issues, but to do with chromosomal abnormalities. She was very comforting and I heard back from her today saying she'd spoken to that Dr and also a fetal medicine midwife, and that they do further testing when ever a red flag like this is raised. But until the results come through there's no action plan. But she can chase the results up do we get them in about 2 weeks rather than 6 weeks which is much preferable.
I've also had a few replies from my thread on the miscarriage forum and there's a few girls in that who gave some good info/advice.
It's really shaken me up today but conversely today is the day that sickness has kicked in! I'm ironically feeling much more pregnant than I ever have. Maybe it's baby trying to reassure me. That would be nice.
Need to drag myself out to a wedding reception which is the last thing I want to do. But it will be good to keep my mind occupied I suppose. And when I feel that anxiety bubbling up I'm just going to 'chuck it in the fuck it bucket' as now all I can do is hope for the best.
Thank you both again for keeping me sane. X

Hi ladies, do you mind if I join you? Size recommend this thread over on the recurrent thread.

I'm considering signing up to the Response trial and would be interested to know what it involves and if there's any negatives I should be aware of? Thanks in advance x

I'm pleased you 've spoken to your trial manager and that is good that you will get your results sooner. Honestly why does everything take so long.....your head must be all over the place its been such a shitty few days for you. like this whole process isn't bad enough.....so what next your husband gets tests done?

I am gutted to be honest really hoped to be pregnant this month there was me worrying about testing so soon when I only had to test once. I dont know what to brown discharge is about it happened last month as well only started since last miscarriage.

huge hugs sizethree im thinking of you & hoping baby is trying to reassure you xx

hi girliesaints of course you can join us..... I signed up for the trial last month so im no expert I'm afraid.....I'm hoping it works in our favour because of the drug but my biggest concern is not getting real drug and if there was any side effects for me/baby.
I track ovulation anyway not sure if you do? So that part was easy then started preg testing yesterday but I'm out already this month
so sorry for your losses. have you met with the trial team then?xx

Hi Claire, thanks for the info. No haven't meant with them but saw the trial being advertised at my local hospital when I was there this weekend getting the results after last MC (all clear) and thought I would find out about it as my consultant didn't seem to know much about it. Do you know whether they count an chemical MC as one of three? Have had two missed MCs and an early chemical.