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Jedi Mind Tricks - Elizabeth Unexplained
Lots of data but no answers
greyautumnrain
greyautumnrain
Jedi Mind Tricks
Monday we had the debrief with our doctor. The fact that I am not writing about it until now is a side effect of how conflicted I feel about it and the fact that spiffy new job is now blocking livejournal, preventing me from posting during lunch.

I arrived just as Grace came out to fetch the appointment before me. She had a student with her, and the woman before me initially agreed to having the student in the room, but quickly changed her mind when she found out the student was male. I spent the next 20 minutes feeling sorry for the med student, since now he'd be stuck in my appointment with nothing less traumatic to buffer against it. Med school is tough.

When the appointment came Grace immediately launched into her plan for next cycle, which included more radical changes to the drugs. No more lupron, switch to menapure for the stims, and use antagon to prevent early ovulation. She seemed upbeat considering the dismal failure that was this past cycle. It turns out that she had more info on those three embryos that didn't make it to transfer. They were highly fragmented and quit dividing.

And here's where the Jedi mind tricks come in. Going in, I was pretty sure that Cornell was the obvious next step, now I'm not so sure. When we brought up our concerns about RSC she agreed that these were valid concerns, but made all sorts of reasonable points about how every place has better people and worse people. Sure, we could go to Cornell, but they treat famous people a lot better than random folks off the street, and might do things to protect their statistics. It all sounded reasonable and rational, and at the end, I wasn't sure if it was Grace using Jedi mind trick on me or the clever folks at Cornell. Just now I'm not sure what the best plan is. All I know is that if Spiffy New Job sends me to the conference in DC I'll need to wait another month lest I be in DC the week I'm supposed to be stimming. It wouldn't do to start the cycle and then say, 'oops, can't take that business trip after all, it interferes with my thrice weekly intimate encounter with an ultrasound wand."

One thing Grace is clear on though. If the change in meds doesn't help with the fragmentation, she doesn't think this is going to work for us. She did not put it quite that bluntly, but it was clearly what she meant. It's not a happy thing to be facing. I was hoping that if I just stuck myself with enough needles and spent enough money this would work out for us. Now we're getting hints that maybe it won't. I'm not ready to give up on my eggs, but it's still... Its there, that ugly, terrible thought, lurking in the corner like the huge unmentionable that we so much want to ignore as impossible as that is to do.
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Comments
chenoameg From: chenoameg Date: July 13th, 2007 02:50 pm (UTC) (Link)
I think I missed the post where you started considered Cornell.

Have you looked into Boston IVF as another option? I have heard very good things about it.
outerjenise From: outerjenise Date: July 13th, 2007 03:00 pm (UTC) (Link)

Ick! Fragmentation

The fragmentation is a major bummer. I don't know much about that problem or what can be done to prevent it, but it does seem like a pretty high hurdle. As for DC, it might be good to take a break for a little while, anyway.
psychohist From: psychohist Date: July 13th, 2007 04:31 pm (UTC) (Link)
I just want to write down some things I remember from the conversation.

We've been using Luperon along with follicle stimulating hormone throughout the first half of the cycle (roughly two weeks preovulation). The FSH causes multiple follicles to develop. The Luperon is supposed to prevent the lead follicles from developing too fast, so we get multiple large follicles. She also said something about luperon being thought to help minimize the effects of endometriosis by slowing the development of the endometrial tissue, I think.

Up until now, we thought this stimulation method was the only one available. Now she's suggesting not using the luperon, which she thinks may be contributing to low quality oocytes and fragmentation. I've always disliked the luperon - admittedly partly because of the name, which probably isn't rational - so my gut reaction to this is positive. Also, she went back and showed us the follicle sizes during the IUI cycle, during which no luperon was used, and they seemed to form no looser a group than what we've had in the IVF cycles.

I do think this is the kind of change that could really help. I just kind of wish we'd had it as an option during the first cycle.

Other things to note: we had four or five embryos, which had reached the 4-6 cell stage the day before transfer but were declared dead because they hadn't divided at all in the last day. It's quite possible that our embryos have been stopping dividing around this time all along; previously, they were 2-4 cells the day before and were transferred at 4-7 cells. I've been thinking it would be good to get a blastocyst transfer just to see if they get through the cell differentiation phase properly; this is circumstantial evidence that they do not. I would note that the fragmentation, while never good, seems to have gotten worse between the first try and the third try.

Also, Grace said she would try to schedule herself for the retrieval, though she couldn't guarantee anything. I hadn't even known she did retrievals. It might be reassuring to have her, but what I'd really like is scheduling the Russian woman who did our first retrieval, because we know for sure she does a good job.

I don't know. While people say endometriosis has effects that aren't well understood, I think the primary one in this case is the one that is well understood: the eggs don't get from the ovary to the uterus. That might be the only one, with the other problems coming primarily from messing with the body with drugs.
psychohist From: psychohist Date: July 13th, 2007 05:04 pm (UTC) (Link)
Link to some information on Lupron and endometriosis:

http://www.resolve.org/site/PageServer?pagename=cop_ch_20040407

It seems Lupron can be used to inhibit recurrence of endometriosis and/or reduce the pain from it. The doctor in that chat uses it to suppress endometriosis for a few months before IVF, but didn't mention using it as an agonist to FSH during follicle development.
enugent From: enugent Date: July 16th, 2007 10:57 pm (UTC) (Link)
Here's my understanding, for what it's worth, drawn mostly from the book How to Get Pregnant that I linked to elsewwhere in this thread.

Lupron is a GnRH agonist. It acts at first to stimulate the pituitary's production of LH and FSH, but because it is constantly present, instead of present in 90-minute "pulses" like natural GnRH, it exhausts the pituitary, downregulating FSH and LH to very low levels. You want to avoid "natural" production of LH because it will surge to trigger ovulation when estrogen levels rise, but you need some LH for FSH to work effectively. The older gonadotropins (like Pergonal) included some LH as well as FSH, because they were purified from the urine of menopausal nuns, rather than synthesized. The Lupron is continued during stims with FSH (or HMG) so that the pituitary doesn't ruin everything with a premature LH surge.

Instead of Lupron, a GnRH agonist, it's possible to use a GnRH antagonist, which directly shuts down the pituitary instead of exhausting it. It tends to drop the LH level lower than Lupron does. It is also a much bigger deal to take a dose late, as you could easily get a premature LH surge if you stop blocking the pituitary, triggering premature ovulation. To avoid dropping the LH level too low, too soon, you can start taking the antagonist when your follicles get to 13 mm or so, instead of before starting FSH. As long as you start it before the estrogen levels get high enough to trigger the LH surge, the cycle can proceed.

The author of this book prefers "step-down" protocols, where you err on the side of too much FSH in the first five days, rather than "step-up" protocols, where you start with a more conservative dose and increase it if necessary, and believes that they lead to higher-quality eggs. He's not generally wild about the newer GnRH antagonist drugs, but says that they might be "the ideal way to stimulate a marginal ovary with poor ovarian reserve in an older patient." I hope that's not a good description of you guys.

I haven't been able to find anything about comparative fragmentation levels with Lupron and with the GnRH antagonists.

I do have the impression that skill during transfer is a bigger deal than skill during extraction, although both are important. If the transfer catheter "pokes" the uterus, it can act like an IUD and prevent implantation.

At this stage, it seems to me that it would be completely reasonable to seek another opinion, even if you end up going back to Dr. Grace for another cycle. Surely you can do a consult with Cornell or BIVF or someone to see if anyone else has ideas about how to improve your embryo quality. (For the couple I emailed you about, in their cycle at Cornell, they got fewer eggs, but a much higher fertilization rate and therefore a greater embryo yield. I don't know exactly what was different about the cycle, but I know that her meds were changed significantly, and it's hard to argue with success.)

I wish you guys the absolute best of luck.
enugent From: enugent Date: July 13th, 2007 06:01 pm (UTC) (Link)
I just finished How to Get Pregnant. If you haven't read it yet, I would highly recommend it. It doesn't seem to me that you are responding all that well to the med protocols that you've been on so far, and he describes many possibilities, all with the details of what your hormones are doing when and why they work.

Personally, I don't like the badmouthing of Cornell. Did you get the link I emailed you a week or two ago? My impression based on the non-celebrities I know who have been there is that they are a bit impersonal, but very, very competent.
psychohist From: psychohist Date: July 13th, 2007 08:54 pm (UTC) (Link)
We did get the link. Grace's concern seems to be more with the process, while we're more worried about the results. At the end of the appointment, though, she said she's be completely supportive if we wanted to go to Cornell. She did caution us against trying to split the procedure - evidently some people wanted to get the tests & drugs here, but then go to Cornell for the actual surgery - but we weren't planning on doing that anyway.
twe From: twe Date: July 13th, 2007 08:15 pm (UTC) (Link)

Luperon

I must admit I have also found the name sort of off-putting.
enugent From: enugent Date: July 15th, 2007 12:23 am (UTC) (Link)

Re: Luperon

I suspect that there are not very many RPGer in the drug-naming focus groups.
twe From: twe Date: July 16th, 2007 12:15 pm (UTC) (Link)

Re: Luperon

I'm afraid I'm totally missing the RPG connection. It just makes me think of wolves (lupus).
enugent From: enugent Date: July 16th, 2007 05:02 pm (UTC) (Link)

Re: Luperon

Just that I suspect the wolf/werewolf connection leaps more readily to mind for an RPGer. Others might think of lupus (the disease), but I bet not the wolf.
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