One of the worst things that I realize I do during the TTC
process is become too immersed in it. When I was trying to get pregnant, I would google and run pubmed searches till I could practically
recite the study results; I chased down every possibility I could think of, and I thought of a lot.Some of that paid off though. I just wish I had done
less of it.
The same issues are starting to rear their heads back again
now. I've examined practically every study that compares IVF protocols and have obsessively examined those that look at blastocyst aneuploidy
and quality.But anyway, I think I've learned a lot, and I'll be updating
both the science of infertility page, and creating a new section on IVF.
I was
talking with my RE's wife (also an RE; a really sweet lady who did my
retrieval) about how well this cycle worked out and I commented that a lot of
it might have been due to the protocol I tailored for myself (I also tweaked it
on the fly) and she joked that I should consult for the more difficult cases,
and I quipped back that I would, if I got paid for it. But there is an
important take home message here: even among a group of patients labeled
"infertile," there are subsets with unique issues. Recognizing those
issues, tailoring each protocol individually, being invested in the tiny
details, and making changes based on those details as the treatment proceeds
may be what is required to optimize your treatment.
As an example, I decided to check LH levels during my
treatment (my RE only checks E2). Everybody responds different to both the
agonist or the antagonist. I realized that with the antagonist, my LH was
getting too suppressed, my E2 was not rising as it should have been (E2
production DOES require LH), and the follicles on the right were lagging (13
mm, as opposed to 19 mm on my left). I decided to add back LH (in the
form of menagon) on the last day of stims. We did not check E2 or follicle
growth after that, but the results on egg retrieval day were fabulous; my right
ovary had caught up and made even more mature eggs than my left. Was the
situation helped by the low-dose LH add back? Impossible to say, but plausible.
Unfortunately, few take such a detail-oriented approach, or
have the sort of attitude necessary for such an approach. While patients of a
particular disease type fall into into subsets, medical treatments today use a
broad strokes approach; the same freaking approach is used to treat everybody
who comes your way. I have rarely ever met a doctor who is maverick and
intuitive and adjusts the protocol (ANY treatment protocol) on the fly. It
takes a rare sort of personality to do that. What REs do when you do not
respond (which is the club-on-the-head approach of pushing the stim dose up
higher and higher) does not count.
The only doctor I've come in contact with who is truly
intuitive and maverick and can to an extent accurately delineate between the
shades of grey of human biology is my mother, and the sort of intuitiveness
about what is the issue and what may work that she has is extremely uncommon. Her
results speak for themselves; she is in a field where the doctors end up doing
very little to help their patients, while her methods produce a near to full
recovery in a pretty high percentage of her patients.
Btw, when she was giving me sub-cutaneous injections, we
discovered something nifty: Instead of squeezing a wad of skin for sub-cut injections,
try stretching the skin out with your fingers; I did not even feel the needle
go in. The few times I got the traditional grab-fatty-skin-and-plunge-needle-into-the-pinched-up-wad-of-skin approach (from the nurses at the clinic), it hurt way
more.
Anyway, I digress. Coming back to medical approach and its
effect on the success rate, there are some IVF clinics in the world that may
show a level of success that surpasses that of their peers, and one of them is
CCRM. I visited their webpage for the first time the other day, and I was
impressed. Forget about protocol optimization (but please, blog visitors, feel
free to talk about your experience with respect to this, it would be very
useful), they use an embryoscope that minutely tracks the growth of each embryo,
they do PGD, and they freeze their embies one per vial (they have to, if they
are doing PGD)...I was practically salivating. But god knows, I don't want
to go through another IVF or pregnancy again. Anyway, the time of
reckoning is coming up quickly. Transfer to the surrogate occurs on Tuesday.
Then begins an interminably long wait: my RE's clinic
believes in testing 12 days after a 5-day blastocyst transfer, which does not
seem logical. It would make sense if you were doing a 3-day cleavage embryo transfer
(because then you would be testing on the 15th day of embryonic life), but it
just prolongs the wait (and the torture) if you want to wait until the 17th day
of embryonic life. And given that in every pregnancy (even the one with the
Trisomy 4 blastocyst), I had a positive HPT by the 10th day of embryonic life,
my RE's assertion that "testing 10 days after 5-day transfer may be too
early" cannot be taken seriously. Let us see how putting my foot down
goes. But here we go again, soon.
I admire your ability to stand up for yourself about medical decisions. My clinic waits 12 days after transfer for for blood tests also.
ReplyDeleteI love your posts. So interesting to read, and wonderful to know that you were self reliant enough to tweak you own protocol. I had a go at tweaking mine when I got pregnant with my baby - and even had to run into my RE's office pretending to have injected on the wrong day (and wrong amount). But it worked!
ReplyDeleteThanks Nell. In this case, the overlong wait can be easily addressed by home HPTs so its not too big a deal, but sometimes it is, and that is when the patient has every right to stand up for themselves because they are paying for everything and its their physical and emotional well-being on the line. they should not have to take crap from anybody. Its easier said than done though :(
ReplyDeleteThanks....what you did is super cool! I just talk my doctors into exhaustion and submission, which is not nearly as interesting :P
ReplyDeleteWow this is so informative and your mom ROCKS!! That's amazing!
ReplyDeleteI am so glad your "tweaking" produced such amazing results.
I am praying that the wait isn't too terrible and the results are a glorious BFP!!
:)
Regarding C.C..RM, this is just my opinion, but I think the biggest contributors to their success are the amount of testing they require in preparation for cycling and their lab (not necessarily in that order).
ReplyDeleteMy first IVF was at another well-known clinic. 30+ eggs, ~21 mature, 17 fertilized, still had all 17 on day 3, transferred 2, 10 of the other 15 made it to freeze at day 5, 8 of those 10 successfully thawed and were transferred over the course of 3 FETs. Fresh and 1 FET were BFN, the other 2 FETs were BFPs that miscarried in the first tri, including 1 that tested as complete Turner's Syndrome.
With all that information (we didn't do PGD on that cycle, and CGH wasn't available back then), our first cycle in De.nve.r used the exact same protocol, and we wound up with literally almost identical numbers, including 10 blasts on day 5, which were biopsied for CGH (which is why we went there). We wound up w/6 abnormals and 4 no results.
Even with that, originally the plan was to do the exact same protocol a third time. R and I had decided it was going to be our last retrieval, so I raised my hand and said, "Really? Why would we do something a third time that didn't produce any successes the first two times, and that we know produced confirmed results of abnormalities?" So the proposal came back to do an antagonist protocol even though I don't have any issue producing eggs and have PCOS. (Ironically, that was the same protocol that our RE from our 1st IVF would have recommended had we cycled with him again.)
So we did that and wound up with 21 to test, 15 tested normal, 1 has resulted in a living, breathing baby, and we have 12 left. But I think it's very possible that we might have done the same protocol a third time and wound up with very similar results as the first two cycles if I hadn't spoken up...
This was a super helpful comment; thank you so much for sharing. Yeah, it makes no sense when something that has not worked twice is repeated a 3rd time. I'm so glad you caught that and spoke up. Your 3rd IVF is the most successful of anything I've ever heard of (15 normals!), that is just amazing.
ReplyDeleteOut of curiosity, what was the protocol the first 2 times around?
Also, about the last bit, because I'm using a surrogate, home HPTs are a bit trickier, so I'll probably have to wait for the beta. If it were up to me, I'd be testing by 9 DPO :(
Thanks Michaela, nice to hear from you :)
ReplyDeleteI go to CCRM and have always been very very pleased. We did PGD and CCS overnight testing of our embryos. Our of 5, we had 4 normal blasts: 6AA, 6AB, 6BA, and 6BB.
ReplyDelete