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?

Hi sizethree!

Firstly I am so very very sorry for your losses. You must be absolutely totally devistated. I assume you are ttc your first?
Good luck in this tww :)

I am just about to sign up for the RESPONSE trial, my appointment is next Monday.
I've had 8 early miscarriages in a row (all 4.5-6 weeks) first was November 2013, basically every month we've tried since, as some months we've had 'off'. We started ttc for number 2 Sept 2013.

We saw prof Quenby in Coventry last Feb after number 3, had Feb off then 3 months of cyclogest (progesterone). Caught every month but again lost. After number 6 we went back to look into having the nk cells test, had 2 months off trying and went to have the test to be told there was a charge. We always agreed we'd never go down the paying for testing/ivf route as we have a perfectly healthy 3 year old (easy to conceive). Not a financial decision, just a personal one.

I lost the last one in October (the furthest I got and really thought this was it!)
After that one I broke down and told dh I didn't want to try anymore, he agreed to whatever wanted. I was totally distraught and totally had enough, but I (we) do desperately want another child.
We had 2 cycles 'off' and started again end of last month (a lot!!) and I actually didn't catch! :o

After my October loss, they scanned me to check I was clear and found a fimbrial cyst. The cyst was 5.5-6cm but not causing any discomfort and they said it won't affect fertility and trying. It was checked again in December and hadn't grown.
I now have it in my head that it blocked the egg this month hence I didn't fall, but if they've said it's ok, surely it's ok.

I was 35 in November, my first loss was just after my 34th birthday, and I still think about that one the most. I should have a 6 month old now, but if know I've just got to not think about it too much and just pray for a successful pregnancy.

Anyway enough jabbering from me! What was your appt like?

That grin as meant to be a not a

Hi choccy, thanks hugely for your reply. And just want to say how much I admire your resilience and determination, what a woman! I'm so sorry you are having an incredibly awful time.
My appointment took about an hour and a half. And I'd met the trial manager and nurse before during my many trips to our EPU.
I'd swatted up on all the reading before hand, which speeded the process up a bit.
Basically they go through your pregnancy history, the week of development that the pregnancies failed, what treatment followers Rev and general medical history.
They take bloods too and weight (not great so soon after Christmas, ouch!) and height abd BMI.
They explain the timings for scans when you get your BFP, which is really reassuring as its every fortnight so that will help with anxiety.
And show you how to use the ovulation chart and chart for when to start pregnancy tests. Then you get sent away with bumper pack of the Clearblue digital ovulation kits and pregnancy tests (in a branded tote bag, not sure I'll be poncing around in public with it though!)
It all felt really positive and it was the best I'd felt about pregnancy in a very long time.
Where are you based? I'm up in Edinburgh and I'm only participant/ patient/ contestant number 3, as its only just started here.
So Yeh I'm in the 2 week wait but as they need to whip you in as soon as you get a BFP, I have to start testing on weds, even though I'm not due til next Monday.
But with my most recent miscarriage, I also fell pregnant just one cycle after a miscarriage so I'm extra nervous.
How are you feeling about taking part in the trial?

Ooooo sounds interesting!
Yes totally agree with the weight thing I've got a week to get some of the Christmas goodies off then
Hopefully this month is promising for you. It must be totally and utterly heartbreaking getting so far :(
I've not got as far as you, but still an awful thing to go through, and I still class them as babies, even though they were little teeny eggs.
I'm not religious in that respect and I know they're not effectively babies, but you know what I mean, you just get attached.

I've spoken to the research midwives a couple of times, and it's lovely to feel you have so much support, but I don't really know how I feel about the trial. I think because it's blind, I'm feel a bit disappointed as I just want them to give me the drug. I know that sounds totally selfish, I just feel it's such a waste of time if I'm given a placebo if that makes sense?

My dh is 41 in May and we always said we'd stop trying then, so I just feel like I'm on a countdown tbh and this is our last chance.

Glad they're not scrimping on the tests either! I never show up on Internet cheapie tests, only superdrug or FRER, so CB is good. It was one if the things I was dreading talking to them about as I didn't want to come over like I was ungrateful for the tests! My gp has given me a pile of blood test forms for when I get pg as tests are so unreliable (and the others are so costly!)

Someone is meant to be calling me tomorrow to confirm time next week. I'm due to ovulate next Saturday (cd15), so am keen to start this ASAP.

What's the procedure for you when you get a bfp?
I'm warwickshire based, so only 15 mins from Coventry which is great :)

It's devastating losing a pregnancy at any stage. the minute you see that secind like appear is when all the hopes and future appears. You're so so strong to cope with such loses.
What gets me through is that the risk is worth it. Miscarriages are one of the most horrific experiences any woman can go through, but eventually holding your new born baby will always be worth the pain.
Totally know what you mean about it being a blind trial. I really don't want to pods around with a placebo when there's a proper drug thag could actually help me have the baby I do desperately want. And obviously all women on the trial have had shitty luck so to get given the placebo would be yet another blow. But in the appointment they did mention that there's been a rise in healthy preg cues on the trial, even in the placebo group, purely from having more support and interaction during the early weeks. So big yay to that.
Procedure is that as soon as you get the BFP you need to see the trial manager asap, like within 24 hours so they can scan you and start with the drugs/placebo.
You inject once a day into your tummy. They give you a couple of weeks supply at a time and you need to keep them in the fridge.
I got myself back into a better headspace tonight. I think if I do get a BFP this week I'll be terrified, but I'll be in the best possible hands due to the trial. And if I don't then I have next month to try all over again. I don't think I'd be disappointed, I hope if anything is feel a touch of relief.
I've got an appointment on Thursday with the fertility departmebt as it took 8 months for the 1st pregnancy then another 8 for the second. So it's good I'm in the system so even if I get the placebo and the trial doesn't work for me, I have some kind of back up plan, as we get free help as we are still struggling for our first baby.
Let me know how you're getting on and any other questions.

Ps. Great you live so near Coventry. I've heard great things about the care there.

Morning! Have you tested this morning? X

Yeh. A big fat no. But although um following their strict instructions it's oky 7 days since I got a smiley face on my ovulation test and from experience, the earliest I expect s BFP would be Sat/Sun so a few torturously looooong days ahead!
Have you had your call from the trial manager to confirm your appointment on Monday?
A close friend of mine just told me she's suffering her miscarriage. It's so sad as she's struggled to fall pregnany for 4 years. It's just all so FLIPPIN unfair. And I was in the post office and caught a glimpse of a trashy mag cover with Kerry Katona on the front. She's looking forward to her 6th child when she ditches the booze belly. Nice. Ffs, how the hell does she even manage to have children. judgy face. Sorry. Rant over. It's just such a lottery.

I know, it pisses me right off these people that just seem to look at someone and fall pregnant! I knew someone who adopted 2 kids (sisters) as the mum was a junkie. She had already had kids and was pregnant too. She obviously wasn't allowed to keep them. The person I knew couldn't adopt any more, but she said where does it stop?? She needed sterilising I think!!

So sorry for your friend, that is just truly awful :( she must be distraught.

So sorry you got a bfn. Have you tested since it are you waiting til tomorrow?

I got an appointment through, it's Monday at 11am. Apparently I'm seeing prof Quenby too. My DH wants to come too so that's good.

Oh Peof Quenby is held in very high regard, great news that is who you're seeing. You'll definitely be in the best possible hands.
Still big fat no. But it's onlt 10 days since positive ovulation so there's still hope.
I also had a D&C in late November and a hysteopingogram in early Jan, so there's been a lot of action in my womb, hopefully making it super accepting of new pregnancy.
I hate this two week wait. And I get a bit manic with symptom spotting and over analysing every thing.
Got massive To Do list this weekend to take my mind off it.
How are you feeling about your appointment?

Fingers tightly crossed for you!!
I've normally got a clear result by 12dpo, a slight (unclear) shadow by 10dpo, but I really must stop testing so early as I get my hopes up that this is it. I'm not looking forward to the trial in that respect!
I know what you mean about the tww, prob is af symptoms are the same! And no matter what you google, there is always someone who had the same as you!!

Feeling positive about my appt. I can't believe it will actually be a year since my appt with prof Quenby after number 3!! I was expecting to have a baby or at least be heavily pregnant by now!!

Had a busy day here too, doing stuff to our house, and DS is keeping me on my toes today :)
Hopefully your have that BFP in the next couple of days, when did you get BFP before? Are you feeling optimistic?
Hope your friend is ok x

Yeh, I know what you mean about time passing and realising you should have a baby by now. I get so sad when the seasons change and was in a right slump over Christmas as it seems to really bring home the childlessness more.
I'm having to wait 4 months for my recurrent miscarriage clinic appointment, so frustrating! And I've had all the tests already (I have a lovely GP who did them all after my 2nd) which came back showing there's absolutely no reason found. And the pathology of my third loss showed no chromosomal abnormality. But as we've been trying for over two years, we have been put on the NHS waiting list for IVF. But that won't really help as I can conceive, and miscarriages are common after IVF too. So I really hope this trial can help me carry full term and have an actual live take home baby.
My BFP usually shows up a day or two before a period is due. But I've only had one period since last MC so not too sure when period will rock up, as my cycles were all over the place for months after. I'm 10 days post ovulation today. Hopefully I'll get a BFP tomoz or Monday, or period will turn up early next week so I don't keep false hope up. I'm usually 28 day cycle but had been up to 32 after first MC.
I'm feeling like I'll be disappointed if I don't get a BFP. And I'm not too hopeful.
I sent my friend a box of a few things (nice lip balm, warm socks, nice tea, choc bar, tissues and a puzzle book) to comfort her. She's getting D&C on Monday so this weekend must be difficult for her as the waiting is so awful.

Good luck with your appointment today. Let me know how you get on.

Im in!
All good, the ladies running it were lovely.
Feel more positive now :)
Any joy your end? Xx

Yay! Snap bags! Glad they were lovely. Positively in all aspects of the word is exactly what we need.
Period was due today, it's not shown up, so officially late. Boobs sore but negative pregnancy test this morn. Only my second cycle after MC so think my body is still trying to get back Ito the swing of things.
VERY frustrating though, as I am massively impatient!
When do you start the ovulation testing?

That is frustrating for you! Did you ov test this month? I'm impatient too so we can be impatient together ha ha! Good sign that the red witch is holding off though and your boobs hurting. Have my fingers tightly crossed for you.

I'm due to ov this Friday (well, get a positive anyway), so I started testing this morning. Just the circle this morning though. Strange using these digi ones as usually I use the cheap dip sticks for ov, so we'll see if these are better. Strange doing it in the morning too as the others say not to use fmu.

It seems all I've done in recent weeks dip paper sticks into pee. Worried I'll miss it when I get pregnant again!
That circle is so frustrating but it's pretty exciting to see the smiley face turn up. It makes up for 'failing' pregnancy tests, at least it feels like I pass something!
Yes, I definitely ovulated this month, 2 weeks ago tomoz. So period should be in its way. Wanting to keep moving! So unbearable being in limbo.

Ps. Are you a magnet for pregnant women too? I know it's partly because I must notice them more now, but I swear they also gravitate towards me. On the bus, in queues abd tonight I started a life drawing class and the woman next to me had a big blooming bump. Arrgh!

How you getting on?
Any joy?

I've still got a circle normally positive today so will try another one later. The line inside is darker.

I know what you mean about being a magnet. I came off fb end of oct mainly due to EVERYONE being fecking pregnant!! Not that I'm not happy for them of course but its just awful!!
I went back on just before xmas and 1 announced the sex and one more preg announcement, I was only on 2 days! Same happened last week.
I've not been on Instagram for weeks, just gone on and another one ffs!!!
Dh has been so ill all week with flu like symptoms, so selfishly now I'm wondering if it'll affect his sperm this weekend :(
I'm just beside myself and just keep wondering why me

4 days late but period arrived this morning. Typicsl that is wasn't on time and got my hopes up. Before I started this TTC journey I was regular as clockwork.
Anyway, back to day 1 in new cycle, do it's better than waiting!
I hate Facebook. It's just one massive baby parade. I've tried to come off it but I'm too nosey. But I've unfriended/blocked any preggers, newly wed or newly mummied friends because I can't deal with the smugness. And constant announcements, scan pics, whining about how tough it is being pregnant/ a mum yawn yawn.
I love Instagram though. That tends to be baby free. Or again, I unfollow!
Sorry your DH is unwell. I'm pretty sure it won't affect swimmers though. hopefully he can muster some strength for DTD.
I got the 'why me' rage today too. I was quite excited about possibly being pregnant this month and having a baby in time for a cute Halloween costume. I know it sounds so silly and I'm not a dressing up children freak, but it's just every time I get a negative test it's another set of plans that goes. And I can't help but work out a due date as I'm so hyper aware of them now having three that never happened.
Thankfully I can have a glass of wine to congratulate myself in surviving the week without tears.
I never drink in the TWW just in case. But maybe binged ringing and taking up smoking my solve I'll my issues as that seems to be they key for healthy pregnancies!

Sorry af arrived :(

Lol at dressing up baby :) I think it's cute and it's good for you to think about things like that, it's what keeps you going.

Hope you enjoyed your wine.

I'm so confused here. I alway get a positive ov on cd 14 (only once in 16 months has it been cd15). Yet here I am cd16 and no frikkin smiley face, wtf??
My usual dip sticks go dark in the afternoon of cd14, and by that evening are light and stay light from then on. However, the last 2 days I've tested twice a day, fmu and about 2pm, and still no smiley! My second line this morning was darker, I'm not sure if the lines get darker like a normal opk stick?
Anyway ds was at my parents all day yesterday and overnight so we 'took advantage' of that
However dh is still rough (and still asleep now), so will see how he is later for round 2 lol. Just don't want to miss my chance!

How frustrating. Same thing happened to me wurh late ovulation. I was convinced I must have ovulated early and missed it altogether, but I eventually got smiley face on day 16. I think all the excitement of the trial slowed my egg down a bit. My lines did get darker like the normal sticks do.
Very much hope you get uiur smiley face tomorrow morning. Hope you managed around 2, ding ding!
The tracking does take away the romance a bit doesn't it! Sex scheduling is hardly how I imagined married life would be. Mind you, my two most sucessful pregnancies were conceived on particularly drunken occasions, so maybe I just need to plan a boozy hedonistic weekend of partying in 2 weeks and I'll get that BFP!
Ohhhh, I have my fingers crossed for you this month and will be cheering you on even if I end up brjng months behind.
Hope your other half is feeling a bit better, and you've by exhausted him too much!

Still no smiley. I think I have a duff batch! I had ewcm Thursday, cervix SHOW on Saturday, and ovulation stitch pain yesterday, which would be bang on the usual! We've 'tried' this weekend anyway although DH still not himself.

Lol at your drinker antics! I've not drunk much since ttc, only the months we've had off. I'm too scared!!
Fingers crossed we both get a blazing BFP this month :) Funnily enough mines due around Valentine's day ?? you never know (although I do remember thinking that last year too )

Sounds like you've got the usual ovulation days covered regardless of a duff test. But arghhhh, HOW annoying that the smiley face never showed.
Fingers crossed you get the best Valentine's gift of a BFP.
I'll prob be ovulating then so my husband will have a great Valentine's weekend!
I usually don't drink when TTC but there was a big wedding and a music festival that I remember clearly fitting with ov dates. Maybe there's sonethibg in being very relaxed that helps the swimmers reach the egg better. I can definitely be a bit tightly wound up as default setting!
So are you now in the grim 2ww?

I think I am! 1dpo here I would assume!
I've even emailed CB tonight as I think their test is a pile of shite!
We don't 'do' valentines, but that would be a great gift this year :)
Lots of SWI for you then ha ha.

Oh I wasn't criticising you drinking btw. I've never really been a drinker (always the driver) I'm just petrified while ttc! People have told me to just chill out and carry on as normal lol, it probably would help!