Friday, September 11, 2009

RE meeting: sticky wickets


We met with the RE today to discuss the genetic results from miscarriage number five. He wasn't in the best mood and pretty much said nothing has changed since the last time we met with him after our fourth miscarriage in May. That triploidy was a random event, not age-related, and not likely to repeat. He said we're in the same boat as before, faced with the same decisions as we were before. He seemed to want to leave it at that. So I asked if we could discuss all of the options again, and he said ok, not enthusiastically, but ok. I was hoping that talking about our options might help create some clarity.

Unfortunately, clarity can be hard to come by.

A few things that were decided:

Despite my longing for a miscarriage wizard, we currently feel that since everything tested is coming up chromosomal, we aren't going to pursue immune testing just now (although I have to say, Dr. Mary Stephenson in Chicago and Dr. Garcia at Penn did really peak my interest). We've already done a full recurrent miscarriage work up here and all was negative...I also spoke to a physician at the recurrent miscarriage clinic at Yale and told her the quick version of our situation, what's been done, and where we are receiving treatment, and she said Yale would not have much else to offer, except for one thing that you'll read about below (and from talking to a number of other academic OB peeps, it sounds like the academic miscarriage clinics tend to be similar in their offerings). Given that we have a clear idea of what went wrong for the three losses we were able to test, at this point we aren't going to look at more controversial, unproven tests and treatments (e.g., IVIG).

Based on one of your comments yesterday (and thank you for all of them!), we made an appointment with a geneticist M.D. here, which will be in early October. Just to get her take on our situation and to find out if there is anything else we can do or should consider. So we let the RE know about that. He seemed to think that was an ok idea (again, not enthusiastic, but didn't shoot it down).

And we did decide with the RE that I will have an Endometrial Function Test in a little over a week just to be sure there are no lining issues in addition to our other problems. This is one of those "just to be on the safe side for the future" sorts of moves. The physician who does this is a placental and endometrial pathologist at Yale (who even knew there was such a specialty?!). We've been considering this test for a while and it was the one thing the Yale program has to offer that we haven't already done.

Oh, and we're also both now taking high doses of folic acid. Low folate is associated with trisomy 21, in addition to neural tube defects, in some studies. So given that there is almost no risk of toxicity, we're adding this to both of our repertoires in the hope it might help and won't hurt.

So we did make a few decisions. But then we were left standing smack in the middle of the confusing morass of the bigger picture: the where to go from here. I'll tell you, it's a sticky wicket.

For the future, we discussed the following options:


1. IVF with PGD at our clinic
Pros: close to home/work. Good clinic. Comfortable here. Can test at day 3 so even if don't have blasts can get info. Transfers fresh embryos, so hopefully better.
Cons: Only tests 9 chromosomes (but would have caught all of our problems so far). Transfers fresh embryos while stim levels are still high (some docs say may hurt implantation).
Unanswered questions: Is PGD more or less traumatic to embryo than CGH/Microarray? How high is risk of mosaicism in a day 3 embryo?


2. IVF with CGH or microarray in Denver
Pros: Good clinic. New, potentially better treatment. Can test all chromosomes. Transfer several weeks after vitrification so body can return to more normal hormonal state (some docs say this can help with implantation)
Cons: Far away, inconvenient. More expensive. Emotionally taxing. Need to get to 5-day blast stage, so if that doesn't happen, whole cycle is a waste (this one really scares me as we haven't done so well on this front in the past). Cutting-edge, experimental treatment, so could turn out to be worse than standard of care. Uses vitrified embryos, which some docs say is worse than using fresh.
Unanswered questions: Is CGH/Microarray more or less traumatic to embryo than PGD? Is there lower or same risk of mosaicism in CGH v. PGD? Will I make enough blasts to make it worthwhile to test? Will we use up all of our financial and emotional resources this way? Will this be so taxing to do that after a single cycle we will feel we are burned out and just need to stop?


3. Highish dose stims and IUI at our clinic with goal of creating 4-6 follicles (I'd like to be stimmed even higher, but my RE said absolutely not because of risk of OHSS. No one is so worried about higher order multiples with us anymore...after 14 transferred embryos (and 37 embryos created in all), all we have to show for it are two dead, aneuploid babies)
Pros: Lower cost. Less invasive. No surgery. No transfer. So hopefully easier emotionally? No manipulation of embryos so some docs say lower risk of aneuploidy. Basically, the idea here is to just increase the numbers on the chance that one of them might be normal... looking for the needle in a haystack.
Cons: Can't test embryos.

And of course, maybe it goes without saying, but throughout all this, we will keep trying on our own. Hey, you never know. The RE encouraged this route as well.

And yes, at the same time, we are educating ourselves about adoption...reading, thinking, and feeling our way around about it. And yes, donor is still another possible option for down the line...

"This is so hard," I said to the RE as the meeting was winding down. And he said, humanity peeking through for a moment, "I know. I'm sorry. It's hard for me too. I want to be able to make it better. I want to be able to fix it." So maybe he feels almost as helpless and frustrated as we do?

Will and I dashed through the rain together and sat for a few minutes in my office after the appointment (my office is two blocks away) to regroup. We discussed the meeting and our thoughts. Apart from agreeing that our RE was not a happy camper this morning, we felt no more clarity about the situation.

The RE's parting words were: "Just tell me what you want to do, and I'll do it."

Ah, if only we knew. Around and around and around we go. We still don't know what direction to take. We're grateful that at least we have a few options.

Mo
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30 comments:

  1. Damn. It does sound like you have lots of options, which can be good, but can also be frustrating, because how can you ever know which is the best option?

    I'll be interested in hearing what you decide on, and on hearing your thought process on how you end up getting there.

    You guys are in my thoughts. I just wish this was all easier - on ANY level easier. Hang in there.

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  2. Thinking of you as you ponder what to do. Hope a path becomes clear to you soon.

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  3. Sounds like you are stuck between a rock and a hard place? Having lots of options can be a great thing (I don't function well with lots of options - i usually only want 2, the fork in the road and that's it).

    As for your RE, well, my old RE who I love seemed really upset a few times we were there, and it was clear he was just upset because he wanted to fix it, but couldn't.

    Hugs, may insight strike you both on the head.

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  4. Wow -- so many options, all of them difficult in their own way. I'm sorry your RE was a downer, but I guess he gets points for honesty??

    Wishing you the best for whatever you decide.

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  5. This is so hard. And one can not understand why you have to go through that.
    There is no bright side to it, but one thing is at least somewhat positive, it seems more to be some sort of cell division problem before the embryo forms, less that your body is at all at fault in terms of carrying the babies. That opens to you also the route of egg/sperm/embryo donation.

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  6. No advice, just thinking of you both.

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  7. I love how you've so carefully considered all the options. me? I'd just be all emotional and not have one rational thought in my head.

    I'm praying for you for clarity - I feel sure one way will become the way to go over the next few days/ weeks...

    P.S. Did my friend Candice email you?

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  8. Tough choices, all.

    Here are some thing I've learned while researching this stuff. CGH/MA is less invasive and damaging to the developing embryo than day 3 PGD because the day 5 blast has differentiated cells, and they only sample the placental cells. So you are not removing cells that eventually become the child, are you are with day 3. And while the CCRM stuff is experimental at this point, they are very close to publishing really great success rate data, and will share where they are with the study to date with you as a patient. So while still technically experimental, yielding very good results.

    And a question for you, if you don't mind sharing (I really don't mean to intrude, but I'm trying to understand better, but feel free to ignore!) could the cancer treatment you did have genetically messed up your eggs? Could Polar Body testing be more of value to you - since it really only looks at the DNA in the egg? Maybe, given trouble getting to blast, this might be a better choice.

    I really hope you both find some measure of clarity soon, I know how hard weighing options can be.

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  9. Pie,

    good question. And the answer is that we don't know. there is no literature to suggest that the meds I took damaged my eggs, but two of the three docs we've consulted with suspect that they did (schoolie included).

    Polar body testing looks like a good idea in theory but the results as we've heard about them from Colorado have been pretty poor. I don't know if that's because of something in the testing, something in the selection of patients (e.g., only poor prognosis pts who can't get to blast use it) or a combo of both (my fear). But since the success rate is so low, it isn't as attractive an option to us.

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  10. *sigh* The decisions just get more and more difficult. The path becomes less clear as time goes on. I hope that your path presents itself soon.

    My only advice. Go with your "gut". Soul Search. The right answer usually presents itself.

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  11. Need to get to 5-day blast stage, so if that doesn't happen, whole cycle is a waste (this one really scares me as we haven't done so well on this front in the past).

    Maybe I am not understanding something, but the cycle is only not a waste if you come out with a live baby, right? I mean, not getting blasts is saying something right there, and don't most docs now think that a 3-day that doesn't go blast is probably aneuploid anyhow?

    Option #2 sounds most appealing to me, and I've certainly heard of CCRM pulling off miracles in the past. Hope they have one in the bag for you.

    Sorry it all sucks donkey balls.

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  12. Continually thinking of you both.

    Not that my opinions matter at all, but if it were me, I would literally put all my eggs one proverbial basket - CCRM with CGH/microarray. If they cannot get you to blast in their lab, no one can (in my opinion) and that would be worth knowing too. Just my two cents...

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  13. Mo,

    I posted on your blog yesterday.. I am a pediatrician who work with many geneticists at an academic center. It is possible (hopefully not) that you or Will have a balanced translocation, deletion, etc.. , which may result in pregnancies with chromosomal variations. It is best to confirm by doing microarray on both of you. It is a bit unusual to have several pregnancies with chromosomal conditions, and I hate for doctors to just say "it is a random event" if we have not look at secondary causes. So, good thing that you and Will are seeing a MD geneticist.

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  14. I am completely following your story, and am fascinated with your options. We never tested, but I'll bet our three miscarriages are for similar reasons.

    The endometrial function test seems really interesting and makes me wonder if my center does it.

    I asked my RE about PGD this summer and he spent a great deal of time explaining how he didn't think it was a good idea because we didn't have a known issue, I guess like some disease we were looking for. He also said something about how it only tests one cell, and that they anamoly can happen at any time during division. He seemed to think that there was some controversy around the country about whether it was good for recurrent miscarriage.

    It all has me scratching my head!

    Plus, I don't think my center even does it, so we'd have to have it sent an hour away, which seems a hassle.

    I really admire your committment and willingness to seek help from many different sources. I think I'm of mind that if it doesn't work with this center, then we might as well call it a day. I think that means I'm just tired of it all!

    Anyway, I'll be reading.

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  15. So hard! I wish you could take a real break from this, but time is an enemy with regard to chromosomal issues. There is hope, but still, this just sucks. Makes me mad at the universe!

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  16. WOW that is a lot to take in and think about. I so wish the answers were straight forward and everything was fixable. The hard part is not knowing if everything you are going through or have gone through is worth it. It just really sucks. I am sorry and sending many hugs!

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  17. I am so sorry for all the disappointments, frustrations and confusion that you are going through. Perhaps you might like to take a break and step out of the box and look for a different approach, since western medicine has failed you time and time again. This might or might not be the time for you to look into alternatives, but there is another option available out there with Traditional Chinese Medicine (TCM). It has been known to increase the success rates of IVFs or ART in general. In best case scenario, it has helped many women conceive naturally, despite having been told that they would never be able to. I've had to look into TCM because there is no cure for endometriosis in western medicine, but endo sufferers respond very well to TCM. Although I miscarried, I did manage to conceive naturally within 4 months of treatment thru TCM!

    You can take a look at this website:
    http://www.thefertilesoul.com/methodology/fertilesoulmethod.aspx?ekmensel=e701ee27_12_14_btnlink

    The treatment centres (there are several in US) were conceived by Randine Lewis who was medically trained in Western Medicine. After having many problems conceiving, she resorted to TCM which was successful. She has since dedicated her life to learning TCM and is now a qualified Eastern Medicine practitioner, specializing in infertility. She bridges the gap between Western and Eastern Medicine wonderfully. Her book "The Infertility Cure: The Ancient Chinese Wellness Program For Getting Pregnant And Having Healthy Babies" changed my life. This could be the stepping stone to the baby you've always wanted. I wish you all the best!

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  18. The genetic options are really complicated to sort through. A great resource is IVFConnections boards. Go to the states where you are thinking of cycling, and you will find lots of information on the different genetic tests that women are thinking of doing at the clinics in those states. I think I read there that Cornell is doing CGH on 3 day embryos. I suppose the advantage of doing CGH vs PGD is that CGH tests all 23 chromosomes. I would also imagine that it is equally invasive on embryos since you don't have as many cells on day 3 as on day 5. Some REs say that trying to get to blast is in and of itself a genetic test.

    I was told I have to do polar body testing, and I'm not thrilled about it. It has crappy stats. Then, there is the DE consideration. It's a very difficult choice, but in the end, you have to ask yourself, would you love a child any less that you give birth to if it didn't have your genes? I'm facing this decision myself right now, and I can say that I'm on the fence.

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  19. Mo,
    Mrs IVF and I are on cycle 5. 2 with no genetic testing, 2 with PGD all at one clinic in NJ and now doing Microarray at CCRM. So some thoughts to hopefully help:
    - both schoolie and our old clinic metioned "the dutch (or was it danish - sorry?)study" which showed that biopsy on a day 3 embyo did slow it down vs non biopsied.
    - 1 cell out of a day 3 stem cell could be an embyro cell or a placenta cell. who knows. Out of a day 5 they pick placenta cells, but as you say, can you get to day 5.
    - our old clinic compared CGH / micro vs PGD as to trying to playing an "A" on a musical instrument. PGD is doing it on a cello. You need to be highly skilled. Not all clinic do it well. CGH / microarray is like playing it on a a piano. If the machine is tuned, its hitting a button.
    - mosaicism (as well as no result, false positives and false neg) should have no more than a 5% error rate at top clinics.
    - CCRM. If you get more that 5 embryos that look like they will get to day 5 and you get through microarray / CGH then currently running at a 77% pregnancy rate and 73% full term. Average trf: 1.9 embryos and av age of potential mum.... 38. Other route polar body 17%. (stats as of Tuesday this week)
    - lower mosaicism with day 5 as they take out more cells to test is our general feel.

    So we took the CCRM route as we took a punt on getting to blast, Simple as that. Sorry for the dump but at least some thoughts on exact questions Mrs IVF and I have also pondered.

    1 last thing - CCRM is very big on thinking that a break between stim and transfer is good. In their vitrification process they have only lost 1 or 2 embryos out hundred and hundreds of cycles I believe.

    For us - testing all chrom's is a key mental stage we want to get through. If we cant get a good embryo from testing all chromosomes then we are at the fork in the road and we need to move on.

    Good luck guys. We follow your story very closely and really wish you the best of luck.

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  20. Dear Mo and Will,

    First of all, I want to appreciate the fact, that even through all the pain and severe emotional and mental trauma that you have endured, you are attempting to be so rational about it.

    Am glad that there are some paths still emanating from this morass...and I hope that whatever it is...the end would be a baby or two...

    If you are contemplating adoption, you could even be looking at donor sperms or donor oocytes or embryo donation...

    Good Luck to you! Can't believe how your random occurrence luck has been so shitty.

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  21. I've been wondering about the repetition aspect. It seems to my simple thinking that the treatment for hodgkins (CTx and Rtx) can both damage oocytes, and thus create more than average chromosomally abnormal embryos- raiisng the risk of all sorts of aneuploidy. I'm not sure the no risk of repetition/bad luck line applies here- as your history points out- yes normally triploidy has no risk of repetition, and almost certainly there will not be another, but the risk of all aneuploidies as a whole is undoutably raised.

    Does that make sense?

    As for which technology if any to pursue, it's a toughie. There was a swing towards pgd and then away from it for some of the reasons you mentioned.


    I'm so sorry you're in this situation. I've been really hoping for you guys.

    g

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  22. Again...wish I had answers for you.

    I know CGH can test all the chromosomes, whereas PGD can only test a selected few. That is the major benefit. Plus, even with PGD you would need to make it past day 3, would you not? After all, they remove the cells for testing on the 3rd day--and it takes them a couple of days to test. The stories I've read with PGD still didn't transfer till day 5. Just a thought.

    Also--I've found this blog extremely informative. Written by Dr. Sher. He just wrote about array CGH.

    http://www.ivfauthority.com/2009/09/britains-first-array-cgh-baby.html

    So pleased you'll be talking with a geneticist....hope he/she can shed some light on things for you.

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  23. I would encourage you to at least have a CCRM consultation. In some states it's even free! Woohoo. The overstim problem is somewhat ameliorated because you freeze all the embryos so doing higher stims can definitely be in the cards. The docs don't seem to give a lot of info on the stim cycle on the consult, but I think it would be instructive. It is VERY expensive but it's not that stressful in the end (I guess depending on your jobs and if you can take time off) and actually it can be less stressful b/c you are away from work if you have a stressful job (as I do). Good luck with your decision.

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  24. How sweet that your doc had a real moment with you and shared your disappointment and sadness. What a huge decision! There are so many variables with each choice. I think option 1 sounds good. It would help prevent the events of the past but won't be as financially and emotionally taxing as option 2. If not 1, then I think 3 would probably work really well for ya'll since you've already gotten pregnant on your own before.

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  25. I can totally see your being overwhelmed, but at the same time you have so many avenues to explore, so much hope to be had in new approaches. The only thing I can offer is that a good friend of mine just had a perfect, healthy baby after PGD, so it does work w/o damaging embryos. The rest of course will be up to you and Will and where your hearts are after you consider all of the options. I wish you all the best as you sort through all of this.

    And thanks for your honest note on my blog. Of course I understand fully -- you don't even have to explain. Believe me, I have not forgotten the trials of IF...all of those feelings have just reshaped themselves as new & different anxieties. I hope and believe that very soon I will be able to help you sort through the same transition!

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  26. I have been lurking on your blog for a while but thought i would finally comment.

    I just wanted to mention that your strength amazes me. I endured 3 miscarriages w/o the addition of the stress of fertility treatments and when i got pregnant this last time, i told myself that i didn't know if it had failed in another m/c if i could have gone at it again. You are a very strong person to persevere through all the heartbreak. You are amazing!!

    best wishes to you & DH, I and hope to follow you on with a story of pregnancy and childhood

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  27. thinking of you and simply wishing that there was a clear right thing to do--

    warmly,
    Kate

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  28. Hi Mo. I'm new to reading your blog. I cannot imagine what you must be feeling. Give yourself permission to take time making a decision about your next step. Try to stay focused on only that step on not the "what ifs". I know, easier said than done. I'm unclear as to why are you considering IVF again if you can conceive naturally?

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  29. SIRM does CHG with full chromosomal work up at day 3... and vitrification, I think.

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