9 cycles, CCRM veteran ask me anything (yes, bfp)

[Anonymous]

I am have spent the last four years of my life undergoing fertility treatments and am now 18 weeks pregnant. I thought I would share some of the things I learned because if I had known then what I know now I wouldn't wasted as much time. Also, having spent about 15 months cycling with CCRM I can tell you pretty much anything you want to know.

Just for the record, I do know I am incredibly fortunate to have been able to afford all this. It's still hard, though, no matter how you slice it.

I did 3 full local ivf cycles, plus two iui cycles (total waste of time, never let them foist that on you if your numbers are bad). Oh yeah, and before all that there was a totally unnecessary laproscopic surgery that I had due to a faulty HSG test. You can spasm during the test and it looks like a blocked tube. That was a lot of fun. After pursuing my local options, I then went out to CCRM and did 6 retrievals (1 cancelled cycle and one where they didn't get any eggs at all - that was absolute rock bottom), froze all 12 embryos, 5 made it to day 5 for CCS testing (where they test for chromosomal abnormalities which are major causes of miscarriage), got two "normal" or euploid embryos which were then transferred and now I'm pregnant with one.

I started this when I was 36, having no idea that I would have any problems, and was told I had diminished ovarian reserve. Basically you aren't in menopause yet but you might be soon. I don't remember all my numbers now, but I do remember my AMH was .22 and everything else, including antral follicle count were similarly bad. At the beginning my local doctor told me the chances of conceiving with my own eggs were less than 5%. He was right. I probably made around 25 eggs out of all these cycles (I was definitely a poor responder) and only one made it. If nothing else I wish I had really heard that at the time. I knew it intellectually but couldn't really take it on board and so we plowed ahead.

The reason I went out to CCRM was that up to that point I had really been in the land of wishful thinking, just one more cycle that'll be the one and we'll just keep doing the same thing and somehow the result will be different. What I like about CCRM is that they take a pretty straightforward scientific approach - their primary distinctions being the excellent lab and the near universal use of CCS testing. CCS testing was appealing to me because I needed to know (for my own peace of mind) if all my embryos were bad or not so I could move on. My doctor was Schoolcraft and as others have mentioned, he's not super personable, but he tells you everything straight up and I appreciate that. I had a lot of hand holding at my local clinic when what I probably needed was a reality check.

If you go to CCRM you must be prepared for the incredible amount of time you will need to spend in Colorado. Each cycle I was there about a week and you don't know until a few days ahead when you'll need to come out. They give you a calendar ahead of time of course, but the precise timing is only clear at the end so all airline tickets are last minute and expensive (pro tip - take Frontier from National much cheaper than United which is the only other direct flight which you'll want since you'll be carrying refrigerated medicines with you - really, really expensive medicines). Your partner can come out for 3 days at the end (day before, day of retrieval, and to escort you home) or do frozen but fresh is preferred. Plus it's nice not to be totally alone the whole time. One good thing I can say about all that time is that Denver is a pretty cool place and I found a fair amount to do.

Another thing is that a cycle is not one month, but most likely two. I had to do a month of priming before each cycle so I was continuously on medicine for over two years with only a break from when I switched from local to CCRM.

There is a lot of frustration at CCRM's communication. They absolutely do not do email. You must call them, leave a message, and they call you back. The first two cycles this went perfectly but then it kind of fell apart. But they never missed a deadline on getting me instructions or calling in medicines.

One thing they do wonderfully in terms of customer service is the amount of education they provide. As part of your one day work up you spend most of the day in educational classes learning about some of the science behind what they do. I found it very enlightening and empowering. It really helped me detach more from this process and all the ups and downs of magical thinking and getting me to think about this more like a science project. My nurse, Lisa, was also great about answering all my questions and if she didn't know the answer she'd ask Dr S and she'd get back to me promptly.

By the end of all this I think if I hadn't gotten pregnant I wouldn't have gone on to do donor egg. By this point I was definitely open to it (I for sure wasn't at the beginning and saw every suggestion of it almost as an attack which was foolish) but I was so tired I just couldn't do it anymore. Four years is too much.

Did I mention I quit my job earlier this year too? It was a job I needed to quit for all sorts of non-ivf related reasons, but I mention it to highlight what a commitment this process can be. It can swallow your life whole. I am fortunate that my husband is the calm and patient one and strangely this process has probably made us closer. But I know it could easily go the other way given all the stress it puts on your life.

Anyway, I am happy to answer any questions. Even if you draw different conclusions from your own experiences I know a lot of helpful practical stuff too.

[Anonymous]

Congratulations! I am glad all the expenses were worth it.

Do you have anything to share on how to prepare for FET? CCRM has cocktail supplements for fresh cycles. Can you share what to take/eat for FET as per CCRM?

[Anonymous]

OP - I didn't do anything special for the FET. CCRM has you on a protocol for FET, which is lighter than a normal cycle but you do have to start the progesterone in oil inter muscular injections a few days before. I was on a cocktail of supplements recommended by CCRM but they want you off those before the FET.

By the time I got to the frozen transfer I had stopped doing anything special other than eating right and exercising regularly. I did limit caffeine because it effects blood flow and it's good practice if you get pregnant. None of it, though, seemed to really make any difference in terms of outcomes from cycle to cycle. I just wanted to feel good because you feel so bad on the medications. I did acupuncture for a while and same thing, it definitely helped with the stress but again no real outcome difference from cycle to cycle. I did do acupuncture as part of the FET, though. You do it right in the room you get the transfer about a half an hour before.

Big lesson of so many cycles. Each one is different. You can be on exactly the same protocol two months apart and have wildly different outcomes. Best not to get too caught up in eating or doing anything special unless there is some medical indication that you need to.

[Anonymous]

21:31 again.
You are right about different outcomes with same protocols. I have done 7 IVFs so far and 6 IUIs and I have experienced something very similar.
Thanks!

[Anonymous]

Congrats on your success! There is no way I could've quit my job and cycled a CCRM 6 time$--you are very lucky, OP.

CCRM does CCS testing on all embryos and still recommends everyone transfer 2 (OE and DE)--why other than to boost their SART stats?

[Anonymous]

OP: We transferred both because I was tired and didn't think I could handle another cycle of any kind and also, if the probability of each embryo implanting is 60% then implanting two raises the overall chances that one will implant to 80%. Don't ask me, it's probability and math and I'm a lawyer but both the doctor and my husband agree this is true.

[Anonymous]

Congrats on your BFP. I also cycled locally (x3), plus two useless IUIs, as well as at CCRM. I even ended up quitting my job, too. I think your overview is very good (except "it affects blood flow," sorry, pet peeve). To me, it really does come down to the lab. A local RE once told me to look at the stats for donor egg, although I wasn't using donor egg, because that should show the skill of the clinic and lab without really taking the patient population into account. Makes sense to me.

[Anonymous]

I have some questions about your experiences with CCRM. I've done numerous 8 IVFs and numerous IUIs. I've been to SG, Dominion, Columbia and Cornell. I've tried different protocols, natural cycle, high dose, low dose, etc. Nothing seems to work for us. I have DOR and MF issues. We don't make very many embryos but the quality always seems ok to good. We've done day 3 and day 5 transfers.

I've heard CCRM only does day 5 transfers, is that true? What types of protocols did you do at CCRM? So you did 6 cycles with CCRM before you were successful?

I'm trying to figure out now if it's worth continuing at Cornell, going to CCRM or calling it quits. I'm turning 37 this year and have been at this for over 4 years now. As I'm sure you know, this is just an exhausting process.

Thanks for posting your experiences and being willing to share. And congrats on your BFP!

[Anonymous]

OP: I did do 6 cycles at CCRM. One of those was cancelled because I wasn't responding and one of those cycles I went to retrieval and despite having three follicles there were no eggs. I never got more than five eggs on any one cycle except my very first locally and I was younger then. Like you, almost all of my eggs fertilized each cycle.

All of the cycles were high doses of follistim/gonal f with high doses of menopur as well. I also had lupron and dexamethasone for every cycle. The amounts and timing were tweaked each time. I think they tried one cycle with ganerelix but that was the cancelled cycle and we didn't do that again. I also did priming for one month before each cycle with progesterone, estrogen and testosterone. So I was constantly on meds except for a week or two after each retrieval.

The way they do it at CCRM for most patients, I think, is that you do as many cycles as you want freezing at the day one or day two stage (you decide). You decide when you want to stop collecting embryos and we decided to stop at 12. According to their statistics for an "average" patient half of the embryos won't make it to day 5 then only half will be normal and only half will implant. I think this was for patients 38-40. Schoolcraft said to me though, he didn't really know what my odds were because they don't really have enough data for patients with numbers as bad as mine were. (amy .22, fsh 20). I was very lucky to have two at the end.

Once you decide you've done enough they grow everything out to day 5 and then freeze again do the CCS testing and then freeze again so you can plan for the timing of the transfer.

I don't know if it is worth it to you to try CCRM, but the reason I went there was because I didn't want to go through more cycles without knowing whether I was doing this for nothing - like if all the embryos were chromosomal abnormal I could move on knowing I did everything I could.

Knowing was really, really important to me. All I can say is that I wish I had gone there sooner, even if the outcome were negative the peace of mind would have been worth it.

[Anonymous]

Anonymous wrote:OP: I did do 6 cycles at CCRM. One of those was cancelled because I wasn't responding and one of those cycles I went to retrieval and despite having three follicles there were no eggs. I never got more than five eggs on any one cycle except my very first locally and I was younger then. Like you, almost all of my eggs fertilized each cycle.

All of the cycles were high doses of follistim/gonal f with high doses of menopur as well. I also had lupron and dexamethasone for every cycle. The amounts and timing were tweaked each time. I think they tried one cycle with ganerelix but that was the cancelled cycle and we didn't do that again. I also did priming for one month before each cycle with progesterone, estrogen and testosterone. So I was constantly on meds except for a week or two after each retrieval.

The way they do it at CCRM for most patients, I think, is that you do as many cycles as you want freezing at the day one or day two stage (you decide). You decide when you want to stop collecting embryos and we decided to stop at 12. According to their statistics for an "average" patient half of the embryos won't make it to day 5 then only half will be normal and only half will implant. I think this was for patients 38-40. Schoolcraft said to me though, he didn't really know what my odds were because they don't really have enough data for patients with numbers as bad as mine were. (amy .22, fsh 20). I was very lucky to have two at the end.

Once you decide you've done enough they grow everything out to day 5 and then freeze again do the CCS testing and then freeze again so you can plan for the timing of the transfer.

I don't know if it is worth it to you to try CCRM, but the reason I went there was because I didn't want to go through more cycles without knowing whether I was doing this for nothing - like if all the embryos were chromosomal abnormal I could move on knowing I did everything I could.

Knowing was really, really important to me. All I can say is that I wish I had gone there sooner, even if the outcome were negative the peace of mind would have been worth it.

What is the advantage of doing that? Why not grow everything after collecting, so that way you know beforehand how many blastocysts you have. Then you can decide whether you need more fresh cycles for more embryos or not.

[Anonymous]

What's the difference between ivf with Cornell (Owen davis was our dr) and CCRM? Wondering if CCRM offers something meaningfully different than Cornell. Thanks for any info.

[Anonymous]

I've been with Davis at Cornell for 3 fresh cycles and 1 FET (all BFN). I'm also wondering what the difference is between Cornell and Colorado, especially for a low responder with DOR.

[Anonymous]

I went to Cornell a few years ago and got the impression that CCRM was more high tech (more of an emphasis on testing embryos etc) than Cornell. Cornell worked for me but I was 33 , if I was older and wanted to find that one good remaining egg, I probably would have gone to CCRM.

[Anonymous]

Thanks for this post! I'm glad that you finally have the success that you worked so hard for.

I'll be crass and cut right to the bottom line. I'm a federal employee and I've heard CCRM does not take United MDIPA. Did insurance cover any of your costs? Including travel, lodging, etc., how much do you think you spent out of pocket per fresh cycle?

[Anonymous]

Anonymous wrote:Thanks for this post! I'm glad that you finally have the success that you worked so hard for.

I'll be crass and cut right to the bottom line. I'm a federal employee and I've heard CCRM does not take United MDIPA. Did insurance cover any of your costs? Including travel, lodging, etc., how much do you think you spent out of pocket per fresh cycle?

I'm 6:16 and was a fed when cycling with CCRM. Nothing was covered by insurance (but insurance also didn't cover me locally). I used as many points as I could for flights and hotels. I later cycled at ORM, sort of CCRM "lite" (founded by a co-founder of CCRM) and found it much cheaper to travel there, even though farther. For one thing, I didn't have to rent a car as I did at CCRM. ORM was also slightly lower priced at the time. I don't even want to estimate how much I spent per fresh cycle. I know that isn't helpful, but it was a lot.