Second opinion

Yesterday afternoon I had a long phone conversation with Dr. Sh.er. I was interested in his opinion of how to treat my immunology and diminished ovarian reserve, as he's expert in both areas.

He gave me a lot to think about.

Much of the call was a professor-style lecture on how natural killer cells work, and how they interfere with implantation. He'd looked at my records before the call (although some things I pointed out during the call, which I don't mind - I sent a LOT of records). We were on the phone for over an hour.

For my immune system stuff, he would not use Humira, which he doesn't believe is helpful. He does use Intralipids, and also uses prednisone. He would (and in fact is sending me a lab order to) test me and my husband for a DQ alpha match (which interestingly, is now treated with Intralipids, vs. the blood-based treatment they used to do out of the country). He thinks it's quite unlikely we are a partial or complete match, but since the protocol would change dramatically, it's important to rule it out.

For my protocol, he would use an agonist - antagonist - agonist approach. Birth control pills, overlapped with lupron, then 1/2 dose ganirelix, then estrogen priming with estradiol shots every other day, then start gonal f at a very high dose while continuing estradiol twice per week. After 5 days of gonal f, the dose drops a bit, and then he uses luveris until 2 follicles are over 18mm and 50% of follicles are over 15mm.

He doesn't believe baby aspirin is helpful, so I'd just be on Lovenox for the clotting issue.

Probably the most important factor is that he strongly encourages that we do embryo banking. Meaning we would do 3 back to back retrieval cycles, then send all the biopsies off for CGH, then transfer after the results come in. That way we a) collect as many eggs as possible while they're 36 years old (I turn 36 at the end of May) so that we have a chance at a second genetic child, and b) only pay for CGH once instead of multiple times. If we didn't bank embryos, by the time I'm pregnant, have a baby, and finish nursing, my eggs would be 2-3 years older, harder to get given my diminished ovarian reserve, and less likely to be normal.

That would mean doing retrievals in June, August and October, and then a transfer in December.

While I'm not in love with the idea of not being possibly pregnant until December, we do want to have more than one child, and I think this is our best chance of doing so with both our genes. And it would make this year very predictable schedule-wise (the clinic times cycles, so I'd know ahead of time when I'd need to be in Vegas). And I wouldn't be doing immune treatment until November in prep for a December transfer.

With a CGH normal embryo, and a uterus that's normal immunologically, he's getting a 73% live birth rate per embryo.

What I found fascinating (and scary) is that a FISH-normal embryo (where they test 9 chromosomes) is only CGH-normal 55% of the time (CGH tests all the chromosomes). So in IVF4, the FISH-normal embryo that we transferred, given it didn't implant, was very likely not actually a normal embryo. Argh!

Now 3 cycles of retrieval doesn't mean we'll have a ton of embryos. Typically we get 2-3 per cycle. But that would still mean going into testing with 6-9, even if his protocol doesn't improve our rates.

I'm talking with his office manager today to find out how much this will cost, and to learn more about the timing of each cycle.

I'm thinking of this as our last ditch effort to use my eggs. I think working with Dr. Sher would give a sense that we've tried everything we can to make it work. And if come December we don't have any normal embryos, or don't get pregnant using the ones we do get, it will be easier to move on to donor eggs. If we stay with our current doctor, I think it's harder to draw a finish line and move on.

So lots to think about. Retrievals in Vegas would mean being in Vegas from Day 7 until retrieval, every other month. Which is a pain, but manageable. It's only a 90 minute flight from Northern California.

Would love to hear from anyone who's worked with Dr. Sh.er, or anyone who decided NOT to work with him.

Update:

I got the pricing info. a 3-cycle embryo banking package + FET package works out to about the cost of 2 cycle with our current RE. I think meds will be higher, since I'd be on higher doses. It's scary to think about this much money, but it's what we'd likely be spending anyway. And it gives us the chance to have something to freeze. I also got scheduling info - the June cycle is June 20, and that's when I'd have to be in Vegas. Miraculously, this should work perfectly with my vacation to Mexico the week prior, although I'll be doing shots while I'm there.

It is completely terrifying to think about the amount of money we'll be spending if this *doesn't* work and we move on to egg donors. Easily this much money again. *gulp*

Still here

I'm still here -- just quiet because usually it's appointments and milestones that drive my blogging.

We had our WTF phone call today with our RE. He said what I've been thinking, which is this was the cruelest cycle. We had everything lined up, normal embryo and all, but it just didn't implant. (My beta was 1, so he doesn't think it even tried to implant.) Based on how the cycle went, there's nothing he would change -- we're just rolling the dice each time to try to get everything to line up.

Which is basically what I had concluded. It's frustrating, since it's $20k a pop now with PGS...

Speaking of which, I asked about any financial help -- e.g. a discount -- and he said they don't do that for fee-for-service. If we end up using a donor, we can do a shared risk plan based on her FSH (my FSH is the only thing preventing me from doing it). So this next cycle will take us to the $100k mark spent on IVF so far. Yikes.

The other thing we talked about is timing the next cycle around my vacations. We're going to do birth control pills immediately followed by estrace, which will do the estrogen priming while the birth control pills get out of my system. Hopefully that'll work.

The reason we're doing this is that I want to start stims on June 19, right after I get back from vacation #1 (which is active, so can't do it on a 2ww). With natural cycles, the timing is too unpredictable, and if we just did estrogen priming with my next cycle, we'd be doing stims in early June, which won't work.

So we're only pushing things about 3 weeks, and I can live with that. (Also, I really want to go on this vacation. :D) A little more time with my husband, injection- and hormone- free, is always good for our marriage.

I wish there was a silver bullet, but after 4 IVFs we have a pretty good idea of what worked. And this last cycle we just rolled the dice badly on implantation. We now know we can make a normal embryo, and my lining was good (as always) and my immunology numbers were great (aka normal).

I have a phone consult with Dr. Sher on Monday -- I'm most interested in what kind of protocol he'd use for me. Clearly the antagonist protocol works best, but I know he tweaks it to optimize for diminished ovarian reserve patients...

Not much more to report. Moodwise I'm ok. I generally pick myself up pretty fast and start aiming for the next cycle. I have nurse and financial consults for IVF5 the first week of May, and that'll give me my calendar for up to June 19.

Sending sticky thoughts to the big bunch of ladies in their 2ww's right now!