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

Anonymous
Thanks for the feedback on your experiences with CCRM. I am a case of DOR and have gone through 3 failed IVFs in Minneapolis. Did your overall count of eggs/FOLLICLES increase after going through CCRM ? Is their protocol for DOR patients different than what some of the other clinics such as Sher recommend ?

Amber
Anonymous
Anonymous wrote: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.



Thanks for the feedback on your experiences with CCRM. I am a case of DOR and have gone through 3 failed IVFs in Minneapolis. Did your overall count of eggs/FOLLICLES increase after going through CCRM ? Is their protocol for DOR patients different than what some of the other clinics such as Sher recommend ?

Amber
Anonymous
I'm also a CCRM patient with extensive history. Just got a BFP and am having an ultrasound next week @ 6.5 weeks.

My question for you is did you have trouble getting your OB to do an ultrasound once you transitioned your care? CCRM doesn't write orders for OB ultrasounds. They want the OB to do it. Just wondering what your experience was with that transition.
Anonymous
Anonymous wrote: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.


Yes, Sort of. Your chance of AT LEAST 1 pregnancy is about 85%

There are three ways for at least 1 pregnancy to happen
#1 implants and #2 doesn't...this happens with probability 0.24 (=0.6 x 0.4)
#1 doesn't and #2 does....this happens with probability 0.24 as well
both implant...this happens with probability 0.36 (0.6 x 0.6)
So the chance of at least one pregnancy is 0.24 + 0.24 + 0.36 =84%

But your chance of twins is also quite high!
Anonymous

OP here re

Thanks for the feedback on your experiences with CCRM. I am a case of DOR and have gone through 3 failed IVFs in Minneapolis. Did your overall count of eggs/FOLLICLES increase after going through CCRM ? Is their protocol for DOR patients different than what some of the other clinics such as Sher recommend ?

--My overall egg/follicle count did not really change and if anything was down but then again I was at least a year older by the time I got to CCRM. What I will say is that almost all my eggs fertilized and half made it to day five. I think the lab makes a big difference.

I'm also a CCRM patient with extensive history. Just got a BFP and am having an ultrasound next week @ 6.5 weeks.

My question for you is did you have trouble getting your OB to do an ultrasound once you transitioned your care? CCRM doesn't write orders for OB ultrasounds. They want the OB to do it. Just wondering what your experience was with that transition.


-- No issues with the transition to the OB since I'm old the OB automatically referred me to specialty high risk imaging clinic. So my ultrasounds were never by my OB anyway.
Anonymous
Hi
Anonymous
Hello, I am going into my 8th cycle. I do have a son from my 5th Ivf. Can someone tell me the dr schoolcraft protocol.
Thank you
Anonymous
Thank you SO much for creating this site! I am in the process of preparing for a FET (my first) and would really appreciate your thoughts on a few things.

1. What is the 'optimum' lining size at CCRM? I have heard people talk about a minimum size, but what is ideal?

2. Does it matter if you get to the ideal size early? It looks like I might so wondering if it is better to transfer early or give your body the time it would have normally had to receive a 6 day blastocyst? I don't want to rush my body if other things are going on during that time, aside from the lining development.

3. I am over 40 and from what I have gathered most FET protocols at CCRM start you at 1 vivelle patch and gradually move to 4 patches per day. My clinic might want to keep me at the current dose (2 patches) as my lining is 8 mm on cd12. But again, maybe there is a reason for continuing to increase? what does ccrm do in this case? keep increasing any way? hold at 2 patches?

Thanks so much for your help! Need to decide soon what to do.
Anonymous
Just an FYI for others who find this thread: CCRM discontinued their Family Building Program at the end of 2016.
Anonymous
Anonymous wrote:Thank you SO much for creating this site! I am in the process of preparing for a FET (my first) and would really appreciate your thoughts on a few things.

1. What is the 'optimum' lining size at CCRM? I have heard people talk about a minimum size, but what is ideal?

2. Does it matter if you get to the ideal size early? It looks like I might so wondering if it is better to transfer early or give your body the time it would have normally had to receive a 6 day blastocyst? I don't want to rush my body if other things are going on during that time, aside from the lining development.

3. I am over 40 and from what I have gathered most FET protocols at CCRM start you at 1 vivelle patch and gradually move to 4 patches per day. My clinic might want to keep me at the current dose (2 patches) as my lining is 8 mm on cd12. But again, maybe there is a reason for continuing to increase? what does ccrm do in this case? keep increasing any way? hold at 2 patches?

Thanks so much for your help! Need to decide soon what to do.


8 mm at 12 days is not too thick too early. As long as lining is over the minimum, it's ok - it's implantable, there is no "ideal" thickness to implant. Think of a road - as long as it's wide enough for 2 vehicles to pass each other it doesn't matter just precisely how wide it is - could be 20 feet, could be 30, could be 24'8".
Anonymous
I'll be 42 this summer. I've lost two pregnancies to T21, I have a daugther who is almost two. I have done two cycles with GW. In both cycles I got 9 / 8 (respectively) that were good on Day 3. But only 1 made it to day 5. The first time, it was abnormal. Waiting on test results for this round.

I'm wondering whether CCRM can help me any more than GW. All I hear is that they have a good lab, but I'm not sure whether that helps, given my situation.

Thanks for your thoughts.
Anonymous
Anonymous wrote:I'll be 42 this summer. I've lost two pregnancies to T21, I have a daugther who is almost two. I have done two cycles with GW. In both cycles I got 9 / 8 (respectively) that were good on Day 3. But only 1 made it to day 5. The first time, it was abnormal. Waiting on test results for this round.

I'm wondering whether CCRM can help me any more than GW. All I hear is that they have a good lab, but I'm not sure whether that helps, given my situation.

Thanks for your thoughts.


Update: that one was abnormal, too.
Anonymous
Anonymous wrote:
Anonymous wrote:I'll be 42 this summer. I've lost two pregnancies to T21, I have a daugther who is almost two. I have done two cycles with GW. In both cycles I got 9 / 8 (respectively) that were good on Day 3. But only 1 made it to day 5. The first time, it was abnormal. Waiting on test results for this round.

I'm wondering whether CCRM can help me any more than GW. All I hear is that they have a good lab, but I'm not sure whether that helps, given my situation.

Thanks for your thoughts.


Update: that one was abnormal, too.


Not OP but also CCRM veteran. To improve egg quality the only thing they did differently for me was high dose of acai berries (you can google the study) and also prescribed saizen (I think it's a growth hormone? To give an extra boost to the embryos). Anyway, it worked for me at 39. All of my embryos were abnormal during previous cycle, 5 were normal with these changes. Might be worth a phone consult.
Anonymous
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:I'll be 42 this summer. I've lost two pregnancies to T21, I have a daugther who is almost two. I have done two cycles with GW. In both cycles I got 9 / 8 (respectively) that were good on Day 3. But only 1 made it to day 5. The first time, it was abnormal. Waiting on test results for this round.

I'm wondering whether CCRM can help me any more than GW. All I hear is that they have a good lab, but I'm not sure whether that helps, given my situation.

Thanks for your thoughts.


Update: that one was abnormal, too.


Not OP but also CCRM veteran. To improve egg quality the only thing they did differently for me was high dose of acai berries (you can google the study) and also prescribed saizen (I think it's a growth hormone? To give an extra boost to the embryos). Anyway, it worked for me at 39. All of my embryos were abnormal during previous cycle, 5 were normal with these changes. Might be worth a phone consult.


What was your acai dose? Was it actual berries or a pill form?
Anonymous
I am PP wanting to know the acai dose. Also, how long were you on it?
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