* Author Topic: Carpe ovum (seize the egg) - sibling journey (ICSI cycle 2 w/ PGS = baby boy!)  (Read 16543 times)

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Offline Liz3511

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Just finished phonecall with ARGC (Dr Sami?)

Very scripted / polished - he sounded rather frustrated with my questions. I said: I just can't find the evidence, not even in non-RCT studies, to support this for my own individual case and individual needs/ problems. Essentially he responded that it's not the responsibility of the private sector to carry out trials (but then slight contradiction as he directed me to Mr T's research - yes, I've read it ...self-selecting control group of N=5)

We would be looking at a delay of at least 2 to 3 months - as predicted, wants to prescribe humira.

This is consistent with the stories of women who have kindly messaged me over the last few weeks to say that they experienced significant delays whilst trying to 'normalise' the immune system. These delays, they felt, did more harm to their fertility than the imbalance they were trying to correct.

My gut is screaming that this isn't a route I want to go down. Should I listen to it?

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    Offline Liz3511

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    I'm sorry the last few entries have been so disjointed (and there's been so many of them).

    I'm going to try to organise my thoughts into pros and cons, and unanswered questions:

    Option 1: ARGC with immunes

    Pros                                                                               Cons
    + feeling that I've covered all bases                                  - will cost ++++++ to cover all bases; bases might not need covering
    + handing over control to someone else                            - am I actually capable of handing over control? Do I trust them?
    + 12-16 weeks to treat = time for natural conception         - humira can disrupt cycles. How likely is natural conception actually? Endless delays?
    + ARGC clearly do something that works!                          - but can we trust their stats? ARGC also select on FSH level.
    + cycling in this country --> less isolating                          - longer time period away from home and work; am not free from Feb - June.

    Option 2: Return to Serum (I'm hoping to have a phone appt with them next week to post-mortem the last cycle)

    + potentially can request tighter monitoring during stimms  - monitoring and cycle will have to take place in Athens: argh! Not fun.
    + Serum would likely prescribe (cheap) intralipids               - would intralipids during cycle make a difference or does it have to be before?
    + could do FET first (whilst on ARGC humira even?!)           - are day 6 embryos ever actually likely to make it?
    + we have already paid for a second fresh cycle                 no negatives to this. It would be loads cheaper to cycle here.

    ? what will they make of my new immune results - and what is their position on the whole humira thing? ?


    Option 3: Embryoclinic, the wildcard (I'm hoping to schedule a phone appt with them next week)

    + close links with UK NHS gynaecologist for monitoring      - will be a drain on NHS resources!
    + NHS gynaecologist rates them                                       - is it just a personal connection?
    + practice in line with UK model, but cheaper                    - unlikely to countenance intralipids etc. as no evidence
    + in Thessaloniki                                                             - in Thessaloniki (one the one hand, it's not Athens. On the other hand, it's still Greece)
    + out in Greece for less time                                            - still not clear how much less time (will ask about this)

    ? will they require me to go out in person for intake appointment or could the checks be done here in UK ?
    ? I want to hear what they say about immunology hypothesis - I've heard ARGC's arguments, now I want to hear from a research-active fertility doctor (vs lovely, generalist UK gynaecologist) about the other side ?

    Okay, I feel so much better now I've written all of this down.

    If anyone reading this would like to PM me and tell me what they would do, I would genuinely appreciate it ;)

    Offline Liz3511

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    So, I have a plan. It involves not ruling out any options until I have more information.

    I've done the latent TB screening in case we decide on humira. If it comes back positive I will insist on using intralipids / antimalarials rather than humira to reduce cytokines because the time needed to resolve/ treat latent TB is too great.

    I will also be Skyping with Serum to do a cycle post-mortem and find out where they think things could be improved. It will be interesting to see if their thoughts are the same as mine.

    I will hold off on contacting the other Greek clinic until I have a) my TB results and b) my conversation with Serum.

    I also looked briefly into the access fertility package this week, but didn't really feel passionately keen on any of the clinics offered in my area (London Women's Clinic Darlington, Leeds and Hull).

    I posted on the Serum social media group to ask for experiences of ARGC. Interestingly, a number of people really rated them although everyone concurred that the 'soft skills' left a lot to be desired. Several people had been pointed in the direction of Serum by ARGC themselves. Others felt that they were completely ignored as individuals and didn't have the opportunity to speak to Mr T when cycles failed etc. Loads to think about there.

    Offline Liz3511

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    Phonecall with Serum tomorrow morning - will update on their suggestions for the (hypothetical) next cycle. Call seems to be with Ioannis rather than Penny.

    I wonder whether I could do a Serum cycle in early November whilst on ARGC immune protocol (would have finished actually taking humira by then, but would be waiting for a re-test).... ? Probably not, I think - surely the treatment would send cytokines etc. haywire? But then I believe Serum could administer intralipids anyhow.

    For someone who 'doesn't believe' in the immunes hypothesis, I'm certainly behaving like I do  :'( I think that's what complete and utter fear of another miscarriage will do to you ... you'll try anything, just in case.

    Offline Liz3511

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    Okay, just finished phonecall with Ioannis. I'm writing down everything so I don't forget what was said!

    As always with members of the Serum team, a pleasure to speak to him. He actually remembers who you are, and is very positive!!

    He has a lot more faith in the day 6 embryos than I do - despite the research I've read. He thinks it might be worth trying an FET before a fresh cycle, but ultimately it's up to us.

    He would not propose altering the protocol for a fresh cycle particularly, although there might be some small changes which would be bottomed out when a new cycle would be firmly planned.

    He suggested steroid and intralipids to deal with the cytokines.

    We could potentially do a medicated FET next cycle, if we wished... this would involve starting estrogen on day 1/2 of the cycle, having a scan on day 9 to see if the lining had grown, and then starting progesterone if so... with the plan to fly out on the 4th day after starting progesterone.

    Lots to think about. We could definitely do this whilst I take humira ...


    Offline Liz3511

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    My TB test came back negative today - so that's good news!

    I can't start Humira until DH gets his HIV / hep B redone. He had it done in May but ARGC refuse to accept results from non-UK labs (and these results were from Serum).

    My period also came today. I was expecting it because this month's ovulation was clearly a weak one, but you still retain a tiny % hope each time I suppose ...

    Offline Liz3511

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    I start oestrogen, prednisone, clexane, doxycycline and baby aspirin tomorrow!!!!

    Scan planned for Sunday 7th October to see what my lining is doing (day 10). We will either then start progesterone and transfer 5 days from then, or do some more time with the oestrogen, rescan, start progesterone and fly out a week later.

    So this FET is really happening. I don't know what to think / feel. Will try to stay in denial for as long as possible - at least work should help!

    I realise that I'm going ahead with elevated cytokines. However, I will have had at least 1 humira injection prior to the FET and will be on prednisone. Will also use intralipids, dates TBC, and may get Serum to retest just my cytokines whilst I'm out there, for informational purposes (it's much cheaper there!)...

    I know the odds aren't particularly good for day 6 embryos but it has to be better than 0%, it's not particularly expensive (I own basically all the meds other than intralipids already) and it won't take long out of my work schedule...

    Offline Liz3511

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    I've been trying to take some actions to feel better / more 'myself' recently. I had a colour analysis 2 weeks ago (I'm a winter!) so I have been carefully buying bits and bobs, wearing better shades of make-up, and recently considering wearing a bit more jewellery. I don't want to just wear something because of how it looks though - I want something with personal meaning.

    So I found a lovely birthstone necklace on 'not on the high street' that you can personalise to match your own family. I entered the birthstones for me, P and the children. After some thought, I also entered a single clear crystal to represent the 5 potential children we didn't get to meet (and maybe a child we will meet in the future). I hope this was the right decision and the necklace makes me happy/ hopeful rather than sad when I wear it.

    Period seems to be over already. I hope that my lining is nice and thin, ready to be built up again with oestrogen. I wonder whether it's logical to wonder whether my lining sheds effectively? I assume so - surely it wouldn't be trilaminar at all the follicular-phase scans if it wasn't building up in a healthy way? Aaargh, why is there always something to worry about? I asked P whether a lining that doesn't shed is a 'thing' and we concluded that aside from Asherman's (please no!!!) it probably isn't a thing. I sometimes wish P was an ob/gyn rather than a GP ...

    L xx

    Offline Liz3511

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    Still haven't progressed to ARGC prescribing humira. Apparently one of the blood test results isn't present on the report from the path lab (for P, not me!) and they won't progress without it. It also took them more than 36 hours to tell us this.

    What's really annoying is the fact that the missing result is the hepatitis surface antigen. This result just shows whether you have an active infection. However, the actual antibody test shows clearly that P is negative for hepatitis because he is already immune to it so there is no need for the antigen when the antibody itself is positive, showing effective immunisation (and he's negative for everything else). We are both mystified as to why this particular result is such a deal breaker, and pretty irked that the communication is so slow.

    It's a good job that I'm progressing towards the Serum FET at the same time I suppose. I have my first lining scan tomorrow (day 8) to see how it is building, then another one on day 12 (Tues) next week.

    Have been reading an interesting thread on the immunes board here about the fact that humira blocks the action of TNF-A and may not decrease absolute levels. I suppose that's why ARGC allows people to cycle even if their cytokines haven't decreased, once they've taken the drug a couple of times.

    Realistically, I only have time for one humira round (2 injections) before cycling. I cannot cycle from the end of January to March, then mid-April to June because of lecturing commitments so I really really need to get a cycle underway with them before Christmas ... but I suspect they really don't care at all what my timing needs are. It's very clear that it's their way or the high way. I knew not to expect anything fluffy when going to the clinic, but it's very frustrating / depressing nonetheless. I do hope that they will respect the wish to get on with a cycle rather than spending months messing around with intralipids ...

    Offline Liz3511

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    Just realised I didn't update on Thursday's lining scan! On day 8, lining was 8.6mm and trilaminar. Ovaries looked reasonably quite (for a non down-reg cycle) and the sonographer was brilliant as usual. Next scan is tomorrow (9th October) and hopefully that will signal that I can start cyclogest / utrogestan. How I dislike vaginal progesterone - always seems to give me a yeast infection (sorry TMI)! May try to stick with cyclogest PR during the day this time and only use utrogestan PV at night.

    I know this is pessimistic but I also asked if I could buy some meds for another fresh cycle whilst out there in Greece. My reasoning is that things with ARGC continue to move quite slowly, I turn 36 in February, we have already paid for a second fresh cycle in Athens and my meds don't tend to be very expensive (will mainly need to be Puregon and cetrotide - I was on 150 stimms per day last time and I can't see them raising that). Of course, this FET may work, but I'm not feeling it to be likely. Just hope it's not another miscarriage :(