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Conception

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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

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clairemorgan81 · 13/05/2015 12:37

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

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 12:22

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

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.

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

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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.

clairemorgan81 · 13/05/2015 12:02

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

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.

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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

clairemorgan81 · 13/05/2015 11:17

pleased you know your plan hope your feeling better about it all March. I really hope this works for you x

Marchgirl · 13/05/2015 10:54

It went well thanks. Definitely following the Coventry protocol next time now, so arranged to speak to the trial nurse tomorrow. I'm hoping they'll keep me on the books in case the worst happens again on the pred etc, so that I could give response a try.
My consultant has agreed to prescribe heparin if that's what cov recommend (after a bit of a battle). She refuses to prescribe pred, but she said my gp might, so I'll take my treatment plan letter from Coventry to them and hope for the best. If not, cov will write me a private prescription, but I'd rather not have to do that

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clairemorgan81 · 13/05/2015 09:55

thanks for your info March.....my main worry is what happens if testing proves there's a problem how would i get treatment?
how did you consultation go last night?x

Marchgirl · 13/05/2015 09:50

The one off fee of 360 covers the initial consultation (which is with one of the two professors), the biopsy (also called the scratch), which also improves your lining for 3 months, the testing and results and a phone consult. Not sure about paying again if they didn't get enough. Not heard of that happening but can't say for sure. You only have to go once, although if it took you a while to get pregnant they might suggest another scratch to improve the lining again.
Another place that does it is apparently Thornbury hospital in Sheffield. I think it's private rather than a research hospital but they test for uNK as well, so same sort of thing

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clairemorgan81 · 13/05/2015 09:05

I can't believe nowhere nearer us does it. it's pretty unfair that your postcode determines these things. my consultant is dead set that progesterone etc isn't proven but loads of people are prescribed it same with baby aspirin. I just hear so much conflicting info so don't know whats worth doing!x

philippa88 · 13/05/2015 08:58

I thinking delaying testing might be an option for you, there's nothing worse than a depressing start to the day :(

The odds are quote good for the testing, it sounds like it's worth a try :)
I was also told that once you've paid for the first test, if it doesn't work and they don't get enough of a sample, then you have to pay the full price again for them to repeat the test! I'd check all prices before going ahead, sounds like it could all be a bit too pricey for us - then the travelling involved too. I wish other areas did the tests, I wonder why they don't?! X

clairemorgan81 · 13/05/2015 08:54

I think if I continue I would definitely hold off testing next month March as its seriously getting to me.
I'm interested in testing is it only coventry do you know that I can go to? also say results were higher that normal would I have to have my consultant prescribe me what I need? if so that might be a problem and also is it one trip or more? Sorry you might not know answers!!x

Marchgirl · 13/05/2015 08:48

I was actually going to suggest holding off testing next month if it's getting you down claire. It's not like they are policing it.Hmm. Maybe that would make it a bit less stressful.

The scratch/ steroid / heparin / progesterone treatment that Coventry offer is still largely untested from the point of view of being officially recognised (no official double blind trials yet), but from their own small scale research that was a sort of scoping trial, they had a 60% success rate in the medicated group, compared to 40% in the placebo group. For me, that's a pretty worthwhile increase in odds.

Totally understand not wanting to spend a fortune. This was absolutely a last resort for me. We just can't afford the crazy prices of all the immune stuff, for example. But i knew Coventry was a one off payment of 360 and also felt like it was a bit more worthwhile as it was funding research rather that lining pockets!

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girliesaints · 13/05/2015 08:39

Oh and hope everything goes ok at 2pm. J is certainly going to be busy with us today x

girliesaints · 13/05/2015 08:38

Sorry to hear bfn this morning. Didn't get my bfp until day AF was due, so pretty late. If I was to do the trial again I wouldn't test as early, as it made it all very stressful.

Testing at Coventry is properly our next step if this doesn't work out as its only a few hour drive from me. I draw the line at full fertility testing as we have dd.

Treading going in this morning. Will let you know the outcome either way, although really not hopeful. Much appreciate the comments x

Joy2713 · 13/05/2015 08:27

Good luck today girlie! Fingers crossed for you. Im not in today until 2pm x

clairemorgan81 · 13/05/2015 07:39

I have been thinking about getting the testing done but seems nowhere near us does it philippa so would mean travelling. so yes shitty newcastle!! I so agree with you on the early testing, so good for you holding off x

philippa88 · 13/05/2015 07:33

Thanks choccy, I had a feeling it might have been a local thing. Oh well, hopefully I won't need it! It's fab for those in that area though, stupid Newcastle! X

Choccywoccydodah · 13/05/2015 07:31

Philippa, I think it's only if you're trialled at Coventry, re nk but don't quote me on it, you may be able to self refer x

Choccywoccydodah · 13/05/2015 07:29

Claire I think it's pretty bad they gave us those shirty tests as they're not very sensitive at all!! We should've been given 10miu!
My hcg has always shown early, so I was pretty surprised when it still did on these, but even so, the whole point is to catch it as early as possible.

What hcg are the new CB ones?

Louise, sweetheart, I'm so sorry you're having bleeding too, :( I would phone L or D as soon as you can as I'm sure they'll say phone epu. I have the number if you want me to pm you (speed dial!!!) Or tbh I would prob just ring epu. I hope it settles a bit.

Joy, sorry your scan didn't go as planned. It's not been a great week scan wise, and everyone has been so positive with the bfps but now been shot back down to earth. It's just so unfair :(

Girlie, glad the bleeding stopped and I hope you get some fabulous news today, everyone needs it xx

philippa88 · 13/05/2015 07:23

Morning ladies, this thread has been busy indeed!!

Good luck today girlie and joy I hope you get better results today. It's never going to be easy for us so all we can do is hope and pray.

Claire I know how you feel, I was due to test this morning but I've not bothered, I don't plan to until Saturday/Sunday morning. I know I'm supposed to but I just think it's way too early - especially with clearblue 50mui tests. Like you said, it can set you're day off with a bad start and that's not good. Why not hold off a couple of days? If there's a little bean in there, it will make itself known. Just my opinion but to prevent all the heartache, I'm not testing just yet.

So have we established whether we get the NK cells tests after the trial if unsuccessful? We looked at getting that test, but our head of gyno told us that even if the test showed an abnormality, then the medication they use is not proven to work. We opted out and partly it was due to the fact we'd have to travel down South and pay through the nose, like someone else said, you get the feeling of 'where does it end?'.

Hope everyone's doing well, hugs for those in need x

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