Thursday, February 5, 2009

"It's not your clinic, it's YOU" - reflections on a second opinion

We spoke with the head of the Colorado clinic last night. I presented our clinical situation, beginning with my health history and including our forays thus far in IVF. He was a very nice, articulate man. He gave us a lot of time, and a lot of detailed information, which we really appreciated.

But his opinion was sobering.

Bottom line, he thinks the Hodgkin's chemotherapy treatment and subsequent radiation from all of the imaging I have had done (more than 30 CT scans, gallium scans, PET scans) have damaged my eggs and are the culprits behind our multiple chromosomal losses. He said that it was pretty unusual to have a double aneuploidy and then to have another consecutive aneuploidy (and in our case two more consecutive), so he didn't think that was just random bad luck, as it has previously been explained to me by my RE and OB/GYN.

He also cited as concerning the fact that we have made many eggs and embryos during the past three cycles (40 mature eggs and 31 fertilized embryos), but only two blastocysts - all while at a top clinic.

He seemed to think our male factor issues, although fairly rough on paper, were not such a big deal since we've gotten pregnant occasionally on our own. And that it is good we don't have any uterine or clotting or other issues (all tested negative in recurrent miscarriage work up).

He said our best chance going forward is donor egg, but that "if you're not yet there philosophically," we have a couple of other options:

1. We can continue the IVF method we have been using - which he likened to a scattershot approach - hoping that eventually we will produce a chromosomally normal embryo and happen to transfer it.

2. We can come to his clinic and use a technique that is under clinical development called microarray analysis to see if any of the embryos we produce are euploid. He thinks we may find out that most or all of our embryos are abnormal. Microarray analysis would involve another fresh IVF with aggressive stimulation and attempts to grow the embryos to blastocyst (a little concerned that we've only ever had two blastocysts...but he seemed confident he could get a decent number). They would then sample the polar bodies or take a few cells from the trophoblast (part of blast destined to become placenta) and test for all 23 chromosomal pairs. It takes several weeks to complete this testing so all blasts are frozen using vitrification and those that are chromosomally normal are then thawed and transferred later (he reported a 99% survival rate after thaw). So far they've had 85 patients - mostly those who have failed other cycles - and a pregnancy rate of 70%.

Using microarray, he gave us a 25-30% chance of success. We didn't even ask about the likelihood of success with traditional IVF.

We were a bit shellshocked after the conversation (me more than Will, since I'm the defective one) but everything he said makes sense. My RE's continued optimism ("Your prognosis here is fabulous!") despite how things keep turning out has been a bit puzzling, but I have just been chalking it up to my own pessimism.

If we decide to go with the Colorado clinic, the whole process will take approximately (gasp) 4 to 5 months, beginning with a day of testing (lose a month, possibly two depending on if they need more testing) and working through the whole process of stims (one month), microarray analysis (4-6 weeks), and then a medicated FET (another month).

Daunting. We have a lot to think about.

Note to self: be careful about looking under every stone - sometimes you may not like what you find.

Mo

29 comments:

  1. Oh wow. That's a lot to take in, eh? Part of me says "good to know, knowledge is power" and the other part is thinking that keeping that rock un-overturned might have been easier (not that resultant pregnancy loss is easy.) Whatever you decide to do, you're both in my thoughts. Take care, and keep us posted.

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  2. I can't even guess how you're feeling after that conversation; that's a tremendous amount of information to absorb, particularly in light of what you've already been told. I'm sure you both are feeling confused and not just a little frustrated. I'm sorry, Mo and Will. Truly. I wish you clear heads and peace during this process. And cocktails. I wish you many cocktails.

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  3. Wow. I bet you are shellshocked. That's a lot of information all at once. I sure the right answer is floating around in your head right now, time will bring to the forefront. GOod luck!

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  4. Mo,
    Wow, that is a lot of info to take in at once. Take some time to digest it and sort it all out before making any decisions. It must have been a very difficult conversation to have. If you are interested in looking at CCRM some more, here are 2 blog links to good friends of mine who did microarray at CCRM and both have ongoing pregnancies. They had WONDERFUL experiences and have a wealth of info and are the sweetest girls :)

    GL with everything! Thinking of you both!

    Jill- http://desperatelyseekingspawn.blogspot.com/

    Christi- http://frenchfamilyjourney.blogspot.com/

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  5. Oh, Mo! That's so hard to hear. So much to process.

    Re Melanie's suggestion, I believe I owe you a cocktail.

    Big hug!

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  6. Ouch. Although there is a logic to it that I can't fault. Radiation, large doses thereof and gametes.....

    Her situation was different, but Sassy (I can give you her url if you don't know her), had three fresh failed IVF's in a row where she produced no chromosonally normal blasts, I think she didn't even get to transfer on some of them. Egg quality issues were the culprit. She did what I guess is a variation on the scattergun approach- three big stims (MDL flare), freezing all at 2pn and one big-ass thaw. It worked, although it ended up being four stims due to no response one cycle.

    But in all of these things, there's many way to approach it, and some of it comes down to luck. Oh, Sassy's a medico, too.

    Good luck,

    J

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  7. wow, that is an intense amount of info. There are hopeful stories out there, but I think it is all so specific to each person, each couple. Hope you get some good thinking done. (maybe not when drinking the cocktails... :) )

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  8. This would definitely require some thought. Good to have a new opinion, some light shed on the whole thing, but nonetheless...thought provoking.

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  9. Yes, daunting is the word. I know 4-5 months seems like a long time, particularly when you consider that you could probably do at least two "regular" IVF cycles in that time. But those microarray stats are pretty darn good.

    Is CCRM doable for you, logistically?

    I for one am glad that you got a second opinion. Knowledge is power, particularly in the hands of smart, informed people like yourselves.

    Wishing you clarity and peace, whatever you decide.

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  10. I think Sarah Solitaire did thje same thing in Vegas.

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  11. It sounds like getting a second opion was most definitely a good idea. I know you said it was sobering but it still souds hopeful - at least to me an outsider.

    When I found out I was infertile I kept wondering how much about "why" do I want to know? Will I make myself crazy with an endless string of questions or is it best to just accept it and move on. I don't think there is a right choice - to know every detail or just the bottom line - the only thing that is right is the chioce that we are comfortable with. I wish you the best of luck going forward and will wait to hear what you decide. Take care of yourselves.

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  12. A lot to think about, for certain. You're right about turning over every stone - sometimes it doesn't feel good to find out the why's of this situation.

    Hope you can get past thinking the whole defective thing. I worry about that myself and would probably feel the same.

    Thinking of you. Keep us posted.

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  13. That is a lot to take in and process. But I believe that information is power and it's in our best interest to know, so we can assess our options.

    Whatever you decide - good luck! We went to CCRM, and are very happy we did. I'd be happy to answer any questions you may have.

    We didn't do microarray, but the IVFC board (ivfconnections.net) has a Colorado sub board, and there is a lot of knowledge and experience there with the testing at CCRM.

    Good luck!

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  14. I am sorry you got that news. Sounds like a similar consult to the one I had with CCRM (minus the cancer history and my m/c was one XO and one normal). They gave me the same keep doing IVFs and hope one sticks talk too. I cried after talking to them. I wish they had some better news and hope for you. I've never had a super positive RE so I am not sure about that. My RE at what I believe is the same clinic was not negative but was not a cheerleader either. Take care and I hope co-culture helps despite the wait being so agonizing.

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  15. Piles to take in, it's hard. Don't know if you follow this blog - http://quenous.blogspot.com/ - but she did something like that at CCRM - so go check it out and read up on someone's experience.
    It's hard to make thoughts - hang in there and put that thinking cap on.

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  16. that is just so much information to take in at once. as shocking as it all is now, maybe it will provide you with the information you need to move forward whichever path you choose. i'll be thinking of you.

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  17. I don't blame you for being shell shocked. That is a lot to take in and some tough info to process! I know you have some tough decisions to make but I KNOW you will make the right one for you! Good Luck with whatever you decide!

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  18. Wow. That is a lot. I thought about contacting them too-- and am impressed by the thoroughness of the consultation that you describe-- I guess the most important part is how you feel and come to feel about what you heard. And know that you are not defective, the chemical and energetic methods to keep you alive had some unexpected consequences, but You are not defective. I wish you peace and clarity as you consider your options and alternatives. I think it is great that this option exists, and you can always do it "next". Best of luck to you.

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  19. That is a quite a bit of information all at once.

    I think I just read about the microarray technique in a BBC news article last week, if I'm think of the right thing. It's kind of cool that they can get all of the genetic information just from the polar body of the egg. Are they avoiding PGD because of the risk of losing the blasts?

    Ugh. Dealing with these chromosomal abnormalities is such a challenge - we have to pull out all the stops and use all the top technology. Hang in there... I'm sure you'll figure out what the right solution is for you.

    Good luck!

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  20. Wow, going from fabulous to scattershot and donor eggs is quite the jump. While assvice is probably the last thing you want, the only thing I'll say is take your time - regardless of the 4-5 month thing. While time ain't kind to us, it'll help you know you're doing whatever you're doing because you thought it through, not because you felt pressure to get going. Good luck.

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  21. That is so much to digest - I feel as though we are in the same boat and are getting comfortable with the scattershot approach...

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  22. Sobering conversation? Yes. Questions answered? Yes. You two do have a lot to think about... good luck. I'm sorry you are going through all of this.

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  23. That is sobering information, but the head of CCRM is not one to beat around the bush. Keep in mind that this guy has seen it all too. In the grand scheme of things, 4-5 months is really not all that long a time to wait, though looking at it from your perspective probably feels like lifetimes. I just have this feeling that your current RE is not being completely honest with you. Take a few days to let it all sink in. Hugs!

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  24. It sounds like your consult was very thorough and you got a lot of information.

    I'm one of those who likes to know things so yes, it is a lot to absorb, but better informed than not, right?

    Take your time, you two, and think things over carefully so you make the best choice for YOU

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  25. geeze! that's a lot. they are the best in the country, though.

    arg. i think that it is good, though, b/c it gives you a good idea of what to expect if you were to go there.

    lots to think about. gl with the processing. i think a bottle of wine and some sushi may help!

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  26. that is sure a lot to process. it feels so awkward specially when we feel that we are the defective ones, as you said.
    Take your time to absorb all the new information. Try to also feel what makes more sense as a next step for you guys. It may take longer, but might be a very interesting option since you´ve already had so many painful losses.
    hugs

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  27. that is sure a lot to process. it feels so awkward specially when we feel that we are the defective ones, as you said.
    Take your time to absorb all the new information. Try to also feel what makes more sense as a next step for you guys. It may take longer, but might be a very interesting option since you´ve already had so many painful losses.
    hugs

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  28. wow - not the news you were expecting. I can only imagine the shock of it all the journey ahead of you and the decisions to be made.

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  29. Just found your blog... somewhat randomly. This must have been hard to hear.

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