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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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Choccywoccydodah · 16/03/2015 14:07

.......and 2 chunky kitkats Blush Hmm I don't actually want choc at the mo but once I'd had one I wanted another. We've got 6 left, let's see how long they last!!

sizethree · 16/03/2015 17:59

How many chunky kitkat sare left new Choccy? Fess up!
I took a day off today as feeling really wiped out and the bombshell on Friday and the combo of due date and Mother's Day yesterday left me pretty emotional. I've been very open with wurk and they have been great. Thinking I'll head back on weds / thurs. Best to rest up when I can.
Claure, how are you doing? Queried you've been a bit quiet today so I hope that if the big red butch had turned up that you're not too defeated by it.
Pop in to say hello as we are here to have a whinge to whenever is needed. X

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clairemorgan81 · 16/03/2015 18:17

excellent news girlie xx

clairemorgan81 · 16/03/2015 19:12

you poor thing sizethree I do not blame you. emotionally you can't be feeling good at the moment I'm so pleased work are good.

you take your time. I have had a shock and have so much info to process and yesterday would have been awful. big hugs.

no af yet still brown so period will be here any day.....I'm ok just feels like a long time until next ovulation given my period hasn't arrived yet! this whole thing just makes me so down it consumes so much of my thinking.

goodness knows how your coping sizethree . I hope your okay. what's next step for you xx

clairemorgan81 · 16/03/2015 19:14

you have had a shock xx

sizethree · 16/03/2015 19:25

Thanks Claire, it's been a tough few days for sure.
DH got his blood taken today for the genetic karyotype screening, (I got mine taken on Friday as went to appointment alone) so we'll get the results from that in about 2 weeks. We just need to hold out nerve til them as until we have more information there's absolutely nothing we can do. It's so tough waiting and this week is extra tough as its a non scan week. So feel like ages until I get any sort of reassurance/further info.
I know how you feel with TTC being all consuming. It feels like a never ending cycle. It took forever to fall pregnabt between MC1 and what ended up as MC2. But then when I evebtually fud see that BFP, it seemed like I wasn't ready!
Have faith that it will happen and your body is waiting for that perfect egg and sperm to meet so you can have a healthy baby and you have no more headache. X

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clairemorgan81 · 16/03/2015 19:31

I was thinking about you earlier actually sizethree....so if it's a chromosome/genetic problem how wasn't it picked up on your two previous losses? Sorry you might have explained it already but I can't remember and will it definitely effect this pregnancy?

these two weeks will be difficult have you got an app on Thursday? x

sizethree · 16/03/2015 20:32

It's standard to not test until the third loss. The first two I miscarried at home (medical management and complete natural) and the third I opted for D&C so they could collect what they needed to do the testing.
So I have no idea if the losses all died for the same reason. But they all got to different weeks of gestation and heart beats were found in the first two. So I'm very much hoping that they are not related and this chromosomal abnormality is a freakish one off. And the Ither losses were implantation issues which the drug for this trial (which hopefully I may be on) is going to fix!
This week is the week off (between 6&8) so I have no contact til next Thurs which is already proving difficult.

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girliesaints · 16/03/2015 21:11

Size, sounds like you've had a rough few days, so plenty of positive vibes coming your way.

I've read through the info pack and emailed back the Trial Manager to confirm I want to take part- hurrah! Bit scary some of the less common side effects but the trial manager was keen to explain this was a much lower dose. Hope I can get an appointment asap as next week should be my fertile week and we're off on holiday so could be a good week to comment ttc. However suspect it won't be that quick.

Choccywoccydodah · 17/03/2015 09:32

Sizethree sorry to hear you're off work with everything :( glad they're being sympathetic with everything, that must make that part easier.

Glad you've joinede trial girlie, great news!!

How's your spotting Claire?

All good here, still 6 chunky kitkat left Grin
Bad night sleep as ds was up most of it. Poor thing has constipation and a temp of 79.1!! I've also found a couple of spots on his back and chest.
I rang 111 earlier as he's NEVER ill so panic mode set in due to his temp.
He's got a drs appt at 11.40 so I've had to put my scan back half hour which wasn't a prob. My parents will come look after him while I go for my scan. I don't want to leave him but I've got to go and I'll only be 2 hours max. Poor little man is cuddled up with me in our bed watching TV :(

Choccywoccydodah · 17/03/2015 09:33

*39.1 temp not 79.1!

clairemorgan81 · 17/03/2015 10:11

morning ladies

I'm sure they asked me if I wanted testing done on my two d&cs so maybe it's different with them being d&cs sizethree?

I hope its just been a one off thing for you. how you feeling?

ahh hope ds gets well soon, wonder what it is? it's awful when they are poorly. my ds had temp and was unwell last week and it was war infection....definitely worth seeing gp.

good luck for this morning.

still brown -darker Today huh x

sizethree · 17/03/2015 11:34

Claire I asked when my 2nd was confirmed (when I was still carrying it) but I was told they only test three or more. Wonder if it varies depending what part of the country you're based. Although that sounds pretty unfair.
But there's nothing I can do until karyotying comes back and then CVS or amnio (if I carry that far).
Sorry you're still in limbo with AF neither here nor there. Very upsetting and frustrating for you.
Choccy what time is your scab? If you put it back half an hour does that mean 2.30?
Sorry your wee one is unwell.
Will be thinking if you,
Great news Girlie. Hope they are speedy at sorting you out with enrolling and the kits.

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clairemorgan81 · 17/03/2015 12:00

they definitely said I would hear if anything found after my d&cs surely it can't depend where you live.
so when would cvs happen?
are you 8 wks next week?x

Choccywoccydodah · 17/03/2015 12:22

Just on way to scan now so hopefully still do it at 1pm as booked. My poor boy had constipation so he's been given sachets, and he started coming out in spots and he has chicken pox too!! Poor little man :(

girliesaints · 17/03/2015 12:29

Hope your little man's feeling better soon Choccy, chicken pox is the pits. Hope scan goes ok.

Claire- sending AF vibes to sort itself out. Mine is all over the place. It's due tomorrow but felt it was coming for the past week.

Think it does vary on testing after MC, size I was also only after three.

Booked in to see Trial Manager this Friday. Might as well get it done soon, as should have first fertile window week. However going away with parents, so will be very limited opportunity ??

sizethree · 17/03/2015 12:32

I definitely asked if they would test my 2nd loss. But I was told they only test after 3, because 2 MCs are pretty common, so it's not flagged as a problem as such.
Seems a bit unfair that there must be different standards at diff hospitals as you had that different experience Claire. Too late to get upset / angry about it now I suppose.
The thing that I'm confused about is that I received a letter back on Dec 2nd stating no chromosomal abnormalities were found. Then on Friday at my recurrent miscarriage clinic, totally different stiry and they HAD found rare chromosomal problem. Very frustrating it's taken them so long to tell me. It's something I should have been told before I decided to TTC again.
CVS will happen probably around 11 weeks. I'll need to find out more about that and amino as both carry MC risk. But I'm just trying to take each day as it comes.
Choccy best of luck with your scan. Hoping you see that wiggley baby clearly. X

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clairemorgan81 · 17/03/2015 12:53

I would certainly be asking questions as to why you had a letter stating nothing found then this? that's appalling.

glad you have your app on Fri girlie. good to get things moving and hopefully you can sneak in some sexy time on your hols haha.

Hope you get scan on time then choccy. poor little ds hope Hes ok x

sizethree · 17/03/2015 13:07

Claire I wish I'd been more assertive on Friday and asked why it's taken so long to tell me about the chromosome issue. But tbh I was so thrown by the news, and I was by myself that I iust wasn't thinking straight.
My DH has called and left messages with the Dr's secretary as he wants to hear exactly what she told me, but she's in clinic all week so unlikely she'll call back. Nothjng thriugh the post yes either as I'd expected them to verify the process in writing.
Anyway, Girlie that sounds promising. Good timing!
Maybe being away with your parents is a good sign. You can behave like teenagers sneaking iff (and look at teenage oregnancy rates!) mh first and most sucessful pregnancy was conceived when we were away with family at a rented house in Yorkshire. Here's hoping its a great omen for you!

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clairemorgan81 · 17/03/2015 13:32

you were bound to be so shocked on Friday you wouldn't have been able to take it all in never mind be assertive.
I would pester to speak to her again and write a list of questions so you don't forget any. they couldn't have followed correct procedure surely , please dont just let it lie x

sizethree · 17/03/2015 14:21

Thanks Claire. DH is very good at being assertive and questioning things. So we shall definitely be demanding done answers as to how this massive oversight was able to happen.
Choccy how'd you get on?
I keep checking every few mins to see if you've posted...

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Choccywoccydodah · 17/03/2015 14:24

Boo!!
8+2, bloody knew it!!!!!!
All good, almost 6 times the size of 2 weeks ago, beautiful HB Grin

Anyone taking part in the Response Medical Trial or any other medical trial?
clairemorgan81 · 17/03/2015 14:40

how wonderful choccy so pleased all well x

sizethree · 17/03/2015 14:41

Congrats Choccy. That is great news. X

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girliesaints · 17/03/2015 15:28

Excellent news choccy!

Not sure if parents and DD in tow next week will lead to much spare time but we will see...

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