Tuesday, April 26, 2011

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*

12 comments:

  1. This does sound like a really good option for your eggs. I love that you'd only have to pay for the CGH once and you would possibly have enough left over for a 2nd child.
    Sucks to do 3 ER's & to have to wait until December but it sounds like a great idea.
    Wishing you all the best!

    ReplyDelete
  2. This sounds like a very interesting consult with Sher! I find the three retrievals with CGH and then a transfer in December quite fascinating, but it makes sense!

    I had a consult with Sher prior to doing any IVF's, and I have so much respect for him. He also helped a friend of mine IRL get pregnant after a couple failed IVF's. And I know many women in the blogosphere that have been successful with him. He diagnosed me with NK cell issues, and recommended intralipids. My hubs really didn't like the idea of going to Vegas to do IVF, but we almost did. Everything changed for us personally when hubs got a new job with IF benefits, so it seemed a lot less urgent. Plus my doc was willing to work with Sher to use and prescribe Sher's intralipid protocol.

    I really trust Sher, and I was definitely planning on going to him if my local IVF's didn't work, but they did - with Sher's protocol. So I highly recommend him even if I didn't use him as my doc. Good luck making the decision! Any chance you would share how much they would charge for 3 retrievals, CGH and a transfer? The cost sounds scary...

    ReplyDelete
  3. this is so intersting. Thank you for sharing. I almost do not know what to make of it all as it is so different than the more traditional protocols which is the entire point of seeing Dr Sher in the first place. How are you feeling about all of this? We are considering a consult with the center in NYC. I know somebody who had multiple IVF failures and is now pregnant, from ivf 6, with the steroid treatment that you are talking about. She hated it but is now happily pregnant so the story ends well. here to hold your hand as this unfolds.

    ReplyDelete
  4. Very interesting. Why does he suggest CGS for you? He did not for us. I really don't know what to think at this point. I want to believe him and I was all about him for a while, but not I'm wondering? He's kind of being a jerk about consulting on my treatment while I stay with current RE to use my remaining frozen embies. And, what you said about a lecture rings true as well...I felt like I couldn't get a word in edgewise so it wasn't so much as a consult. Also in the letter he sent me, he had several things wrong, which made me feel like he breezed thru my file. Anyway, I don't know. I really have no idea. Good luck with your decision.

    The embryo banking sounds like a huge pain in the butt, but does make sense, especially for the money part! =)

    ReplyDelete
  5. I sought a 2nd opinion with him after our first IVF failure and we are headed out to LV on 5/15 for our 2nd fresh cycle. I had JRA when I was little and when he tested me for NKa's I was quite high. Our DQ-alpha was negative. So about 3 days before we leave, I will infused intralipids and he is putting me on Decadron (not prednisone....wonder why the difference?).
    Our original RE, due to being at an educational institution, couldn't infuse the intralipids and C and I were ready to try something new. We really liked him and his office is so easy to work with.
    Did you have uteral thickness issues? Is that why all the E2?
    If you go and need a place to stay we got a killer deal from an individual owner of an MGM suite (one bedroom/full kitchen/seperate living with washer and dryer in the unit.

    ReplyDelete
  6. I really like the idea of embryo banking. I've been pushing my doctors to consider that too- it makes sense to get them while you are younger- and hey- it's one benefit to IVF: true "family planning." :)

    Really hope that this is the beginning of your happy ending. I know the money is daunting, but the way I look at it, at least we will know we've done everything we can do, right?

    Sending much love, hope and luck your way.

    ReplyDelete
  7. Wow, so much to think about. The 3 retrieval plan seems to make the most sense to me, although I completely understand how hard it would be to wait until December for a transfer...

    Whatever you decide, we will support you 100%!

    ReplyDelete
  8. The embryo banking part is quite eye opening. That's a lot of meds in a few months. I hope for the best that this new plan works for you! Sounds very promising with embryo banking and CGH.

    ReplyDelete
  9. i have a super high opinion of dr sher, even though i never was treated by him. i've read just about everything he's published and that i can get my hands on in the last few years though. if you have an immune issue and other docs have failed to get you pregnant, i feel like he is THE MAN to go to. i love his idea for you, and how he's trying to think both long term for you and trying to save you money. i'm sure your head is spinning with so much to think about right now, but whether you decide to go with him or not, i'm keeping everything crossed for you and hubby. big big big hugs :o) xoxo.

    ReplyDelete
  10. Sounds like a solid plan...can't wait to cheer you along. DE...forget about it until then. Right now focus on Dr. Sher's plan. Never worked with him but here he's a wizard.

    ReplyDelete
  11. very interesting protocol and opinion from dr. sh.er. I think it sounds very smart to do 3 retrievals then test, then transfer. So, so much work and such a long wait but a great idea.

    Wishing you the best!!

    ReplyDelete
  12. ivf cost uk
    When you go through IVF, you are not establishing yourself up for failing. Indeed, positive outlook and positivity is important, but having some type of back up strategy is not gloomy, but basically an recommendation that even the best hospital on the planet does not appreciate achievements of 100%!

    ReplyDelete