Tuesday, April 14, 2009

Details on the Demise of IVF #2, Take 2

Thanks to all for all your kind thoughts and well wishes. I'm fine. The decision to cancel this cycle was a mutual decision between my doctor and myself. He would have been okay with pushing forward if that's what I had insisted upon, but that's not a position I want to be in, especially with coverage running out with my insurance.

Several of you said it seemed so sudden given how well things seemed to be going... but that seems... odd to me, because the thing is that nothing had gone quite right yet. My Lupron Evaluation wasn't where they really would have wanted it, with my estrogen nearly double what it should be (mine was 89 vs. optimal should be under 50), but they let me go ahead anyway because it just seems to be what I do these days.

Sunday's monitoring appointment was... okay, but not brilliant. Four measurable follicles? (and a bunch of others that weren't measurable yet.)When supposedly the greatest risk for me with IVF is OHSS? Last cycle after a few monitoring appointments, I had what looked to be four, maybe five follicles that were promising (but also a definite lead follicle that they were going to let fall off) and several others that had some possibility of catching up. We ended up with 10 in the end, but nothing to freeze after an eSET. The goal with this cycle was to have increased the medications such that I would have a much more significant response with the stim cycle and have 14-15 follicles growing from the start (no more than that). That would have given us more to work with.

So when I went in on Tuesday for more monitoring, I had 5 measurable follicles, and while they were definitely growing - there weren't any others to be seen. Five. And while I tried to push my anxiety aside, knowing that I'm not the doctor and I didn't have all the information in front of me... five isn't... what we were looking for. I usually had more than that at this point in an IUI cycle and this is usually where they started talking about whether or not some were going to behave and drop off or whether I was going to have to cancel my IUI cycles. And that was on 1/3 of the doses of Follistim (but no Lupron).

I typed a long, long, long, long post to finish this all off.... and lost it. As I highlighted the post to copy it to the clipboard before posting it (just in case), it disappeared. This was as far as blogger saved it. I frickin' hate blogger. I'm not going to try and reconstruct the whole thing. I'll give you the cliffs notes version.

SuperDoc called me in the afternoon. Never a good sign when it's the doctor that calls rather than my nurse. I told him so and he agreed. He said that he'd been hoping some of the smaller follicles from Sunday would have caught up, but they've disappeared, and we're left with 4, maybe 5, if we're lucky. Last time we had the same thing at this point and we got 10, but he said last time was a slightly different situation where we were seeing 4-5 plus a bunch of smaller ones and I had a definite lead follicle that they just let fall away. This time I have a maybe lead follicle, but possibly not, and no smaller follicles anymore. Odds aren't looking so good that I'd have another 10 follicle retrieval in this case. Plus, the goal had been to get a 14-15 follicle growth cycle this time, and we're not there.

That being said, SuperDoc wasn't jumping to cancel. Yet. He said with this cycle, he'd give me a 30% chance of pregnancy. If we'd gotten the optimal cycle he'd been hoping for, he'd give me closer to 50% chance, and he didn't think that differential necessarily warranted cancelling in and of itself. He said he didn't want to test my patience by cancelling again after having already had one failed IVF and one cancelled cycle. But... to me, that's not a good enough reason to move forward. So although he was leaving it up to me, I ultimately left the decision up to him. I wanted him to make whatever decision he felt was the right decision, medically. And he said that if I was giving him a mandate to maximize the possiblity of success, particularly given that I have only two cycles covered under my insurance left, he felt that the best thing to do would be to cancel. So that's what we did.

As for moving forward....

I took the hCG trigger Tuesday night with dire warnings not to have unprotected intercourse, lest I end up with twins (or worse). Got it. I should expect my period in 2 weeks or so. I will start a 21 course of birth control pills (whoopie). I will start 20 units of Lupron on Day 19 and will continue with 20 units of Lupron after I start stims. I'll take 225 units of Follistim and 75 units of Luveris.

I told him I wasn't trying to play "back seat patient" but wanted to know whether there would be any advantage to trying the antagonist protocol.. He said no. He would use Ganirelex if he absolutely had to, but that in my case he believed that it would, in fact, put me at a disadvantage. He believes it would produce a worse cohort of follicles and would give far less control over the cycle. Though it may be testing everyone's patience, he assured me that they are learning more and more with each cycle that passes with me. The problem is that they are walking a very fine line with my "goldilocks ovaries"... too much and I'll hyperstim, too little and... well, I get cancelled, because it's just not worth doing all this for so little again. But hyperstimming isn't anyone's goal - the last thing anyone wants is to see me in the hospital getting liters of fluid removed from my abdomen, right? Of course right. So caution is good in this case.

By the way, he took me being a back seat patient really well. I prefaced my question with a big huge caveat about not questioning his knowledge and that I would NEVER bring it up if ... well, anyway, so he said to please feel comfortable asking anything I wanted and I did ask about the antagonist protocol and he gave me his very thorough answer (which I've only paraphrased here). And I told him that was totally fine and I reiterated that I was NOT trying to be a back seat patient and he said, "It's absolutely fine. When I'm 0 for 2, it's a perfectly justifiable time to ask if a different approach would be appropriate. But I do think that as long as you think that your patience isn't being tested to much and you think you can hang in there for a bit, we are getting there."

And I believe him.

I just.

You know, this IVF thing was supposed to be "easy." I was supposed to be doing the IVF thing not because nothing else worked, but because IUI worked.... too well. And... now I've had one failed cycle in which not a whole lot went right aside from a retrieval that went a million times better than we expected. I've had one cycle that got cancelled before I even got to stims. And one cycle that got cancelled after stims, but before retrieval. This was supposed to be "bada-bing, bada-boom, you're pregnant."

But now? Now I'm the interesting patient he uses as an illustration to his interns and fellows (no, really! I'm serious!). I don't want to be interesting. I want to be textbook boring.

Since I started my original IVF#2, nearly all of my original cycle buddies on cyclesista have finished their cycles and gotten their results (many of them BFPs!). And in that space of time... I've had two cancelled cycles. Heh. Well, just time to move on to the next one, right? In about five weeks.

Now what to call the next IVF... IVF #2 (take 3)? Or just scrap it all together and call the next one IVF#3?

12 comments:

nishkanu said...

I was always a "let's plow ahead, whatever the circumstances" kind of gal and I really regretted it the cycle that there wasn't much going on. We ended up getting more eggs than expected but all but one was immature. That cycle was a major waste of energy and money, and the next cycle I had something like 19 eggs. So I wholeheartedly applaud your decision to cancel and give it another go. Here's hoping your doc is now very, very familiar with your ovaries and how to drive them.

Anonymous said...

I say IVF#2, Third time will be the charm!

My ovaries are like yours...darn PCOS...either on or off. Sigh.

Anonymous said...

I say call this next cycle Frank ... Or Judith ( to be more greed accurte). It is all so bizarre an random this ART biz anyway! I am so impressed by your clear thinking and self management.
EB

decemberbaby said...

Okay, now we're on IVF 2.1. Right? Or is it 2.0.1? I don't fully understand these things.

Anyhow, seems like a sound decision. You've got a great doctor there, by the way!

Emily said...

That is a lot of info! I love the relationship you have with your doctor - mutual respect.

You sound like your head is really in the right place, despite the cancellation. FWIW, it sounds like you made the right decision - its all about maximizing the odds! GL!

battynurse said...

Well that all makes sense. It had seemed like you had 4-5 that were doing good but it makes sense to be working for more and the whole part about your E2 being higher than they liked. It's probably better to hold off than to go ahead and have it not work.

Bea said...

I'm going to go with #2 take three, because it seems perhaps more technically correct (that's what we'll be telling the insurance company), more dramatic, and... more easy to edit in cyclesista. Although if you want to go with "Frank" let me know.

Bea

Beth said...

As mentioned before, I am just now catching up on my blogs.

I am so sorry that this cycle didn't work out as hoped. :(

Your Dr. sounds incredible. I seriously feel like making the drive (albeit LONG drive from VA) to your clinic, he sounds that great. Especially now that the mobile is in room one!

You know yourself and your body so well... it's quite impressive. I'm sending lots & lots of good vibes for "Take 3"! Thinking of you, as always.

Jody said...

ARGH.

ARGH.

ARGH.

What IF? said...

I'm so sorry about the canceled cycle and hope that the 3rd one really is the charm.

Thank you for the amazingly supportive and encouraging comment you left on my blog regarding our recent triplet news. Before this recent turn of events, I read and loved your blog, but never imagined I'd be walking in your shoes. So imagine my surprise when I realized it was "not a clown car" commenting. :D

It's very cool to read advice from a mom who has not only been there and done that, but who is willing to go through IVF again to add to the family.

You have my utmost respect and admiration!

amber said...

Still sending good thoughts that this next cycle is the charm.

chicklet said...

I so completely get where you were at with this. On our last cycle we only had 5 - one ready to be used that day, one probably the next day, and three others too far behind. So really, at best, I'd have ended up with three if they even caught up, or one if they didn't cuz the other was overcooked. I'm still pissed at how my clinic handled that whole thing but the only thing they did right there was cancel the cycle - because for one to three? Well you're better off leaving them in you than messing around taking them out, putting them in dishes and such, etc.

Anyway, this isn't about me, it's about you, but I just get the whole seeing everyone else finish a cycle, and you still being stuck. It all sucks. Sucks sucks sucks.