Monday, June 14, 2010

Cancelled flights and threats of coasting...with update

We arrived in Denver yesterday - later than we planned because our United flight was unexpectedly cancelled and by the time they notified us, it was almost impossible to get rebooked. Minor frustration that took some negotiating but we're here.

Today we went in for monitoring and learned that I have 18ish follicles growing. Three around 18 mm and several significantly smaller. Estrogen is up to 3,000 already. We received a call from the nurse this afternoon to take the Gonal-F down to 0.

That's right, coasting.

You should have heard my thoughts. Silent, petulant thoughts along the lines of "I ain't doing no stinking coasting!" and some other thoughts that I'll refrain from sharing. I even thought, hey, worst case scenario, I'm the one holding the Gonal-F pen, when it comes down to it. Not that I would go shooting up a small amount of gonadotropins against doctors orders, but it might have briefly crossed my mind.

I told the nurse that I wasn't happy to hear that they want us to coast and that it can negatively impact embryo quality. She assured me it wouldn't impact the quality, but I don't agree (and I know some of you out there wouldn't agree either). I took a breath. I then reminded the nurse (nicely...very, very nicely) that we are doing microarray, that we are freeze-all, that we have been told by Dr. Schl. that there is virtually no chance of us hyperstimulating since we won't be doing a transfer. And that I wanted her to speak to Dr. Schl. and remind him of these things on our behalf. Which she kindly said she would do and that she would then call us back again with our new instructions.

Cancelled flights and threats of coasting are the types of things that would have freaked me out when weren't such longtimers at all this. And now I wouldn't say I'm NOT stressed, but I almost expect these bumps in the road. I also have a lot more faith that we'll get things sorted out. And I seem to have become much more comfortable asserting myself (politely) to make sure our specific situation and needs are taken into consideration. It may have taken seven IVF cycles, but we've come a long way in the self-assertion department.

Just a day in the life of an IVF veteran. Whoo boy. We'll see what Dr. Schl. has to say.


Dr. Schl. still wants me to drop gonal-f to 0. I will still inject one vial of menopur in the morning. so maybe that's not technically coasting? my retrieval was originally scheduled for Saturday. That's many many days from now with no fsh stims...I am feeling very concerned about this cycle. any one out there with any thoughts or experience in these matters?

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  1. Good for you Mo!! You really do have to take the bull by the horns and make sure your voice is heard! So frustrating!! Hope the doc calls back soon!

  2. Sorry for the bump, but glad you're knowledgeable and can advocate for yourself. Hope all goes well. Are they aiming for the crop of smaller folicles?

  3. Oh coasting is so frustrating and I think we've all thought that they wouldn't be able to tell if we just injected a little bit. Totally normal. Take care.

  4. You're probably not going to like this, but my thoughts are just to accept it. Being stressed/frustrated/uneasy about it won't change it, especially if he's confirmed it and you're going to follow his orders. You can speculate all you want right now, but it doesn't change anything, and it might do more harm to your waiting than good.

    Just take care with yourself these next few days, and do what makes you feel the most at peace.

    I'll be thinking of you. ♥

  5. I don't have any experience with this situation, but, just wanted to know we are rooting for you. And, good for you for standing up and making sure you got your questions answered!!!

  6. I think coasting is more of a significant issue if:
    a.) it is for a prolonged period
    b.) it is toward the end of the cycle
    c.) a drop in E2 occurs as a consequence

    Honestly, from what I've seen, the jury is still out on if the cycle should be trashed or not. Wait a day or 3 and watch the E2 and follies and go from there.

  7. sorry, no ideas Mo, but I'm thinking of you both!

  8. Just take a deep breath and trust -Trust that they are the experts in this field. I know it is hard - My RE was Dr. Brian Kaplan in Chicago (FCI)- I finally got to the point that if anyone could make IVF work, it would be him. I knew I was with one of the best doctors and labs in the country, and, so are you.
    My thoughts and prayers are with you.

  9. Hi sweetie pie,
    Menopur means it is not a coasting, maybe just downshifting into first gear. so
    it is still a stim, I am sure they are hoping to get those little ones (18 holy shite!) to catch up to have the biggest number possible.

    On the one hand I want to say trust in the guru, but I want to also say, it is perhaps more important to trust in yourself. When do you check again? tomorrow? wednesday? You'll get better information then.
    you are a fabulous and educated self advocate, keep at it! keep asking, and see how YOU feel about the answers.

    love to you,
    hang in there,

  10. Mo, I hope it brings comfort to know that some women do Menopur only stim cycles. So, while it may feel like "coasting" it isn't technically. Even though you started on both Gonal-F and Menopur and this does represent a shift in your protocol, the continuation of the Menopur should be seen as a better sign than stopping all stim meds entirely.

    Now, that said, I hope they are monitoring you daily from here on out and considering moving ER up to Thurs/Fri, depending.

    In my successful cycle, I had 2 lead follicles (of the 12 I had) and we let them get to 26mm before triggering (knowing we'd be sacrificing them) in order to allow the others to catch up.

    I did PGD with that cycle. I had 12 eggs retrieved, 10 mature, 10 fertilized & biopsied, 4 PGD normals (but two arrested), and we transferred two resulting in a singleton pregnancy.

    Now, because I'm a glutton for punishment, I'd ask Dr. Schl what % of the time when he's only continued women on Menopur has there been success, but that's just me (and you have the microarray component which would likely impact his answer to that question anyway).

  11. Hey Mo, we went down this path so let me give you a happy coasting story. It freaked us out at the time, but with Mrs IVF's E2 around your level we were also told to coast and well, you know how well things panned out for us. It was actually the best cycle out of 5 we ever had with pretty amazing quality. I remember us feeling really anxious at chopping and changing the protocol a lot in that last few days before retrieval, but sh*t, we're not Dr's so we just followed along and turned out stress brain off as best as we could.

    fyi - 18 is an amazing number. It truly is. We all read lots of blogs but those guys in CCRM must have seen thousands of cases and do have pretty impressive stats. For each case you read, there are other who have other results.

    Hang in there.

    Here's a link to where we went though this if it helps ....

  12. Hmm, I haven't heard too many downsides to coasting from my REs but I haven't had to coast, either.

    How many days have you been on stims so far? I do know that REs like you to be on stims for at least 9 days, so if you stimmed fast, they'll coast you to ensure that your egg quality is good. Otherwise you might stim too fast and wind up with a bunch of immature eggs.

    I would trust Dr. Schl. He's considered one of the best, if not the best. :-)

  13. I don't have words of wisdom to offer about coasting, but just wanted to say I'm thinking about you and really really hoping this cycle results in a good microarray report.

  14. No ass-vice here. Just thinking of you and wishing you well. I'm glad you asserted yourself. If you have to, get Dr. Crafty on the horn and talk to him yourself. It's your cycle and you are paying a lot of money for it! Best clinic/doctor or not, it's best when you are your own advocate!!

  15. I love how you assert yourself!

    No idea on the gonalF..... :)

  16. I was on 300iu Gonal-F, dropped to 150, dropped to 75 and then coasting. It freaked me out, I thought for sure the cycle would fail. It turns out that cycle actually brought me the BFP.

    It's so hard to trust anyone who tells you to drop down to 0, even if it's Dr. Schl, but this may actually work.

    Sending you & Will lots of strength to get through this cycle.

  17. I don't have any advice on coasting, sorry. I'm very proud of you asserting yourself, even if Schoolie didn't budge.

    Keeping my fingers crossed for you guys!

  18. Ugh! Frustrating! No assvice about coasting, but I honestly don't think one glass of wine would affect egg quality. So that's my rx. :-/

  19. It's always something, isn't it?

    Menopur's actually 50/50 FSH and LH, so it's not that you're eliminating the FSH, you're just changing the ratio (albeit by reducing the FSH dosage). I'm 99% certain that early injectable stims all consisted of 50/50 FSH/LH and that the possibility of using a 100% FSH (or LH) product is relatively novel. So honestly I wouldn't worry about it, or think of it as coasting. Honestly to me your cycle sounds like it's going great.

  20. I have no experience or advice about the coasting, but I wanted say that I am so glad you are asserting yourself and asking those important questions. You have come too far to let any sort of miscommunication ruin things. I'm thinking of you and hoping for a great retrieval.

  21. I agree with those who said that still taking one Menopur means you aren't coasting. In all of my cycles (7 I think) in which I did a combo GF and Repronex/Menopur, at some point we dropped the GF and were left with one vial of Menopur/Repronex. In one of them I truly coasted for one day at the end. That cycle yielded my firstborn. Of the others I had fairly good results, including healthy twins, a current ongoing twin pregnancy, a miscarriage and a chemical pregnancy. Sadly I consider a miscarriage and a chemical decent results, but given our history of flat out negatives these are!

    Hang in there. These docs have lots of data and good instincts!

  22. Ugh, that makes for a frustrating start, but I would try to trust Dr. Sch. My friend IRL cycled at CCRM, coasted for two nights, and she had 26 eggs retrieved. She ended up with 7 blasts, including 4 normals, and now has a 1-month-old baby. So a few days of coasting does NOT automatically mean gloom and doom. Try to stay positive (and please remind me of this in a couple of months!) :)


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