IVF with CCS Testing
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12/28/2015 8:35 PM
https://www.centerforhumanreprod.com/fertility/further-evidence-for-the-inadequacy-of-pgs-news-from-the-asrm-meeting/

there are 5 healthy babies born now that were originally pgd/ ccs tested and came back as abnormal embryos. 99% of doctors including Dr. Schoolcraft would have discarded them

12/14/2014 7:02 PM
I am 40 years old, almost 41 and just finished my first round of IVF. The doctor was able to only take 8 eggs out, but only two were fertilized. Only one made it, and we sent it out for genetic testing. We got the bad news yesterday that it was not normal. I am completely new at this, and devastated. I was able to get pregnant at a blink of an eye when I was 28 with my beautiful son. 12 years later somehow my tubes have some blockage and need assistance with getting pregnant. My husband and I don't have the kind of money to keep trying, this was our one chance we put all our savings into this. I am completely devastated.

6/11/2014 4:12 PM
Hey Fullofhope. Thinking of you. Hope all is well. would love to talk again soon. I can be reached at cabondinell@yahoo.com

5/3/2014 5:23 PM
Hi

i'm struggling with the same thing. I'm really wondering if its better to keep banking embryos for the next two years and then transfer 6 at a time ( since i will be 43 by then) vs doing CCS testing again and risk that 10 or 20% of my embryos could test abnormal because they were tested at day 5 and they could have self corrected later. Since no lab can grow an embryo beyond 7 days, there is no one out there who can say when embryos stop self correcting.

I only produce 3 to 4 embryos per cycle so even if self correction happens 10% of the time, it might be worth for me not to waste them on the 10% false abnormal ccs possibility and have a miscarriages instead 2 years from now.
this is a really really hard decision but i almost feel like nature should take it's course.

there is a new blood test performed on the mother now, called Panorama. it's the same test as an amnio and could be performed as early as the 5th week of pregnancy to see if the fetus has all it's chromosomes. it's a simple blood draw from the mother and test the fetus' cells that get into her bloodstream.

I have the presentation slides from Yale University Med School if anyone is interested. It's about all these new blood tests that are replacing amnio testing.


5/3/2014 12:16 PM
Just wondering if anyone has news to share. I had a consultation with CCRM and am deciding whether to do CCS or not. Hope all is well with everyone.

4/16/2014 7:47 PM
Hi FullofHope

I spoke to a doctor this morning in San Francisco. they are in the top 5 ivf clinics using CCS testing by volume.

I asked him the same question, how many embryos should I ccs test before I give up. He said there was one another way to look at this: He said before PGD and CCS, women over 41 did an average of 6 to 10 cycles before they got one good embryo and got pregnant!!!! 6 to 10????? wow

he also said he makes all his older patients take 25ml DHEA 3x a day
and 200 to 400mg CoQ10 3x a day

for 2 months before he starts stim.
I think that's similar to "priming" at CCRM but longer.

I hope all is well!




4/15/2014 3:36 PM
Thanks for all of the good information CCS Baby!

Hello Q Girl and Welcome! I totally hear what you are saying. I am having a really tough time gearing myself up for another cycle. However, I don't know if I can live with the "what if" of not trying if there is even the smallest chance. Sometimes I just think I am nuts.

Great to hear from you BondiMack. The DHEA is fine so far. Are you starting stim meds or supplements? I hope it is going well so far.

4/15/2014 1:38 PM
Hey FullofHope
How is it going with the DHEA? I started meds again last Thursday. So far so good. Thinking of you.

4/15/2014 2:15 AM
the most recent research piece on CCS - 2014

http://www.rbej.com/content/pdf/1477-7827-12-22.pdf

4/15/2014 2:11 AM
http://books.google.com/books?id=SijJmaZlVz4C&pg=PA302&lpg=PA302&dq=Preimplantation+aneuploid+embryos+undergo+self-correction&source=bl&ots=qy_uULFl4K&sig=uoeFWS8sQPwFK7y-QxM-EMmtzOs&hl=en&sa=X&ei=tcxMU5-kNqrlyQHC_IHQDA&ved=0CGoQ6AEwBw#v=onepage&q&f=false

4/15/2014 2:03 AM
http://www.fertstert.org/article/S0015-0282(08)03284-6/abstract

4/15/2014 1:58 AM
http://library.tasmc.org.il/Staff_Publications/publications%202008/barbash.pdf

the best one

4/15/2014 1:55 AM
http://www.sciencedaily.com/releases/2007/06/070619083602.htm

4/15/2014 1:48 AM
http://emgerege.vub.ac.be/Chromosomal_abnormalitites_embryo.php

great article

4/12/2014 10:53 PM
Hi everyone. I just came across this forum which is very timely since I just scheduled a phone consultation with CCRM. I am also an older and went through my first IVF at 41. Fortunately for me it worked on the first try. I did IVF with ICSI - had 25 eggs retrieved, 15 fertilized and 2 made it for a day 5 transfer. One turned out to be my precious little girl who is almost 2 & 1/2 now. My issue now is that I am 43 and trying to do this again. Maybe that's crazy given the stats of success at my age, but I wanted to try. I had my retrieval in Dec - this time they retrieved 12 and 4 made it. I only transferred one the first time (BFN), and then did a FET the 2nd time and transferred one (BFN). I just went through another FET with the last two and my initial HCG was 38 (questionable level). I had a recheck 2 day later and unfortunately the numbers went down. I'm certainly sad and trying to decide what to do now. I just don't know if I should even try this again at my age. I'm at a crossroads at this point and doing a lot of thinking. I learned about CCRM and the testing they do so am reading all of your posts to learn more about this process. Sounds like my changes at my age are very low, but I may give it one more go...

4/10/2014 3:46 PM
Hi FullofHope

here are some CCS statistics I found from a clinic in San Francisco. the statistics are coming from a larger lab, Natera. please see page 3.

https://www.dropbox.com/s/riv9yq8ur5lvcuq/Seminar_11_CCS_8.13.pdf

I spoke to another CCS lab in New Jersey last week. According to their statistics, at 42, their success rate was 10% but that was based on an avg test size of 3 blasts. they said for those that tested 10+ blasts, their success rate increased to 20%.

take these stats with a grain of salt pls because none of these people know what sample size their statistics are based on. (That 10+ number could mean that a few a wonder women submitted 25+ blasts and skewed the data)

I met with another IVF doctor in Orange County, CA yesterday. he is a Harvard Med School grad for whatever it's worth. He has high success rates like CCRM so that's why I decided to talk to him.

I asked him how many embryos one should test to be 95% certain that one can't have normal embryos. He said the way he thinks about it is this: only 2% of babies are born to women 40+ in the US.

So I guess our expectations should be set anywhere from 2% to 20% probability of finding a normal. it's better than zero!!! :-)



4/9/2014 12:15 AM
FullofHope - I wish you the best of luck with your cycle in June!
BrstCancerSurvivor - I wish you the best of luck with your next CCS cycle. I am waiting for a transfer probably in a few months of CCS tested embryos.

4/8/2014 3:29 PM
Hi there,
So I am new to this forum and about to attempt IVF for the second time, we had a failed treatment with Reprofit in the Czech Republic last summer. I have EOF due to a bone marrow transplant for Hodgkin's. No one really explained my options to me when I was 24 and found out I had cancer. We are planning to do CCS with a 5 day transfer. Has anyone on here had a failed cycle with success afterward using CCS?

4/5/2014 9:49 PM
Wishing you luck on May CCS baby. Looks like I just missed you. I won't be there until June.

4/5/2014 9:47 PM
Cassava that is wonderful news!!!!!! I hoping the best for your transfer!!!

4/5/2014 9:34 PM
I should also mention in addition to taking the acai berry supplements, I did drink acai juice during my stims - I figured it couldn't hurt.

Best of luck in May and I am keeping my fingers crossed for some normals for you!

4/5/2014 8:42 PM
Hi CCSBaby,

The acai berry study requires you to take the supplement (they provide it for you) 3X/ day for 8 weeks before starting stims. It used to be 12 weeks but they had just shortened it to 8 weeks when i started. You can ask your nurse about it if you are interested. I heard about it from other girls who are on the CCRM facebook forum - not sure if you are on that group but it is a really great group to be part of (very informative and supportive).

I am still waiting to hear from my nurse regarding timeline for FET but I suspect it won't be for a few months. I have endometriosis so they will be putting me on Depot Lupron for I think 2 mths and I need to repeat an HSG to r/o hydrosalpinx and possibly have a lap done before then. I'm trying to optimize my conditions prior to transfer.

So unfortunately I won't be there in May - would have been great to meet you in person!

4/5/2014 1:24 PM
Hi Cassava!!!

that is fantastic!!!!!!!!!!!!!!!!!! I'm soo happy for you!!!!!! and thanks for sharing all the info. It gives me hope

thanks for sharing all the other stuff too. I had no idea there is a way to grow an embryo to day 7 now!!! that's amazing.

How does one get involved with the ACAI study at CCRM? no one mentioned it to me. I drink plenty of ACAI juice on my own, i'm addicted to the stuff but not sure what they ask you to do in the study? eat fresh ACAI? please share as much as you can.

Also, keep us posted please on the transfer and how things go. I"M SOOOO SOOOOOOO HAPPY FOR YOU!!!

Best of luck!!

ps: I'm at CCRM for 11 days at the beginning of May to stim/harvest. Let me know if you are around. I would love to meet up and talk more in person. I usually stay at the Hampton Inn across from CCRM. thanks!!

4/5/2014 1:00 PM
Thanks, CCSBaby.

I am still processing as I write this email but shortly after I posted yesterday, I got a call with our CCS results! And we found out that 5 of the 9 were normal. I still can't believe it. One caveat that Dr. S made though was that 3 of them were my day 7 embryos which have a lower rate of implantation success despite being normal. The other 2 were day 5s and our 3 day 6s were all abnormal.

Because we have been burned so many times in the process already, I am remaining cautiously optimistic and just feeling relieved that we are still in the game. We went from having almost no hope after failing with our first CCRM cycle (and 2 other local cycles previously) to being able to hope again. But I wanted to share with you that there is a definitely a possibility of getting normals (after a cycle with no normals) - I think it is a numbers game and every cycle is different. One thing I did differently this time around was take acai berry (as part of the CCRM study) - hard to know for sure if it was the factor that changed things for me but it may be worth considering if you are planning to cycle again.

4/4/2014 4:56 PM
Hi Cassava

I will keep my fingers crossed for you. My 6 abnormal embryos were; 1 - day 5 rated 5AA
and 5 day 6 embryos rated 5AB to 5BB

The nurse at the time told me that the ratings dont mean anything. she said she has seen 5AA come back abnormal and some 3CC embryos that were ccs normal and resulted in a live birth.

I wil type up my notes from the call later today or tomorrow. My notes are a mess

4/4/2014 11:59 AM
CCSbaby - I am very interested in hearing your conversation with the geneticist. Thank you in advance for sharing.

4/4/2014 11:55 AM
Hello,

I came across this forum while searching for others experiences while I am anxiously waiting for CCS results. I am 38 years old with FSH of 6, AMH ranging from 2.6-4.6 and AFC ranging from 8-24 (the 24 was on EPP) and recently completed my 2nd cycle at CCRM. I have cycled locally twice with a miscarriage once and BFN the second time. During our first cycle at CCRM, despite 28 eggs retrieved, we only had 13 fertilized and 3 day 6 blasts sent for testing, all of which were abnormal. I was devastated with these results as I thought I should have at least one normal. We decided to cycle one more time because Dr. Surrey indicated that their internal data suggests that 60% of people with no normals will get normals with a second cycle. During our 2nd CCRM cycle, we had 39 eggs retrieved, 33 mature, 24 fertilize and 9 blasts (3 day 5, 3 day 6, 3 day 7) of average quality -mostly BB grades, ranging from 3-6.

CCSbaby and Fullof Hope, do you recall the embryo grades of your CCS abnormals and whether they were day 5, day 6 or day 7 blasts? I know they say that embryo grades don't necessarily correlate with chromosomal normality but was just curious. I am also essentially counting out my day 7 blasts b/c there is supposed to be a much higher rate of aneuploidy with them and they have a much lower rate of pregnancy success.

I am preparing myself for the worst - if we have no normals, we had discussed this being our last cycle with my own eggs because we are not sure we have the emotional and financial energy to continue to cycle. It is so frustrating b/c my numbers are OK and I respond well to stim meds - maybe even too well (I am concerned about us having a quantity vs quality issue). Dr. Surrey mentioned that if you have 2 cycles with no normals, that there is a very small chance that a 3rd cycle would yield normals so I guess we'd have to think about this - I feel like it's basically like buying a very expensive lottery ticket.

4/3/2014 9:45 PM
Hi FullofHope, I'm so sorry about what you are going thru. You are not alone though.

I actually think your eggs are younger than mine your amh is way higher and your follicle count is fantastic! I wish I had your stats. I'm happy if they get 7 eggs out of me per cycle and 5 of them are mature and about 4 fertilize.
you are younger than me!!! even at age 39.5 my stats weren't as good as yours. The doc was wondering if my high stress job caused the damage.

I'm on protocol 6 with the 30 day testosterone priming. starting cycle #5 tomorrow. stem is with seizen, gonal 300 and menapure 150 and lupron micro which stopped working lately so i get cetrotide almost every day too.

I will post my conversation with the geneticists tomorrow.

I wonder if CCS is what PGD was 5 years ago. everyone was so excited about it and it was the greatest thing ever and now everyone thinks it's useless since a high percentage of embryos self-correct their own chromosomal abnormalities between day 3 and 5.


4/3/2014 8:36 PM
Hello CCS Baby,

Our doctor basically said it is a statistical numbers game. It is not impossible, but not likely.

When last tested my FSH was 7, Estradiol 242 and AMH was 1.9. My Antral Follicle count is usually about 15. So, the numbers are fine but I am just old. I have had one ectopic (right tube removed) and five miscarriages. It has been a heartbreaking time.

This whole process makes me crazy. I would love to hear about any information that you find out.

I can let you know what I find out about Early Embryo Viability Assessment next week.

I hope you are doing well. It is a difficult process, but it helps to talk to others who actually "get it".

4/2/2014 8:54 PM
Hi FullofHope,

at least someone at CCRM gave you a number! 10% is not bad! better than zero

Dr. S would not even give me a number!! He wanted me to go straight to donor egg but he said if I wanted to test more embryos he would be ok with that. I'm planning on doing more cycles, hopefully, to bank more embryos.

I found the two biggest companies who test blast embryos for CCS. One is called Natera (about to file for an IPO) and Illumina which trades under the ILMN ticker on the Nasdaq.

I Looked thru all their info and the best statistics I could find is 18% chance of a ccs normal embryo at age 41 and 10% at age 42 & 43.

what was your amh if you don't mind me asking?

My AMH was tested 4 times (at my request) at CCRM and I had .4, .89, .2 and .6. (all over the place!!!)

I have 89 questions for my appointment with a Reprogenetics geneticist on Friday :-)
If I get good info, I will post it.







3/31/2014 9:53 PM
Hi CCS Baby and Welcome!

I am so sorry to hear your results.

I am at CCRM as well.

I am 43. My first cycle had six embryos - no normals. Second cycle only one embryo tested - no normals.

I have been given a less than 10% chance.

You will probably have better odds as you are younger.

3/31/2014 8:45 PM
Hi FullofHope. I'm new to this blog. i joined because I had the same question as you. Do you guys know of anyone who had CCS normal embryos after 6 abnormals? I go to CCRM in Colorado and my CCS test results just came back. absolutely devastating. I had 10 embryos, 6 made it to blast and were tested. all 6 came back abnormal. (my chromosomal errors were 18, 21, 22 and extra sex chromosome) I'm 41.

Dr Schoolcraft said 50% or 3 should have been normal. I always thought that was too optimistic. Now that I did a lot more research, I keep getting 18% to 30% chance of normals after 40. I want to do more cycles but so far no one has been able to tell me what these results mean and what my odds are.

I made 2 appointments with embryo geneticists in NYC and LA over the next 10 days. I can post my notes if you like.
thank you guys!

3/30/2014 2:31 PM
Congratulations DZOOx!!

That is such good news....totally ups your odds so hang in there.

Good luck Bondi Mack. It is so important to like your doctor.

3/27/2014 6:47 PM
Hi DZoox - that is great news. Will you transfer both or freeze for later transfer?

We had a good meeting yesterday with our Doc. Interestingly enough it looks like I had a elevated level of lupus anticoagulant antibodies in my blood but only during the pregnancy. It was nice to hear what might be part of the explanation for the loss in December. Other than that all the tests came back with no answers.
We have decided to try another cycle here. I really like my Doc and the staff. Here is to a positive outcome. another interesting note he said that if we get more than one good embryo he would only want to transfer one and freeze any additional. Apparently there is some increasing data that babies from a FET vs a fresh transfer have a lessened likelihood of prematurity among other factors.
If we have an embryo to transfer I will take baby aspirin as a precaution for the antibodies.
Acupuncture tomorrow and going for some highlights and a haircut.

3/27/2014 5:11 PM
Hi, I am brand new to this forum. I am 41 years old and had 8 eggs extracted, 4 sent out for CCS. Got the news today that we have two normal embryos. I'm very happy, but still very nervous. I don't want to get ahead of myself.

3/26/2014 9:13 PM
I know what you mean. I have had the head cold too.

It is so hard to choose a clinic, especially when they all have such conflicting info about protocols etc. it might help to go to a clinic where you know someone though.

When do you think you might try again?

3/24/2014 12:55 PM
Hi. Weekend was good. Finally getting over this head cold I had all last week. I'd definitely like to hear about the alternative. Let me know what you learn and I'll see what I can dig up as well.
Had a blood test and ultrasound today for baseline purposes. We are trying to decide of we should hold off a month. I am waiting for my records so I can send them to my cousin's wife. Do we try again here or wait to see what another place has to say? Frustrated.

3/24/2014 12:04 AM
Hello,

I am doing acupuncture as well.

I am also looking into a new procedure called EEVA (early embryo viability assessment). It is less invasive and less expensive than PGD

I can let you know what I find out if you like.

I hope you had a good weekend as we'll.

3/21/2014 12:32 PM
Who knew we had this much patience in us?

Have you tried acupuncture? I have been going since October and really like it. I sought out a practitioner that is ABORM certified after I watched a video from a professor at Harvard. American Board Oriental Reproductive Medicine.

I hope you have a good weekend! Its supposed to be warmer here for a few days.

3/20/2014 1:50 PM
Good for you! It takes a lot of courage!

It's not too bad. We are monitored at home for the first bit and then go down a week before retrieval.

3/20/2014 11:39 AM
Yes. I think we will. We are even considering going to TX.
How has it worked for you not living in close proximity to the office?

3/19/2014 7:46 PM
It's funny you should mention that. Our protocol was changed and I felt we did way worse than the first time too. We go to Colorado. Do you think you will try again?

3/19/2014 2:27 PM
I agree. It feels like a good thing to be able to rule out some of what could impact the pregnancy. It is interesting to hear about how different facilities run the process.
I have to say that I wasn't surprised we ended up with nothing to test. Now that I look back I didn't have the same feeling of fullness in my abdomen that I did last cycle. Maybe that has to do with the lack of maturity in the eggs. When I spoke to the embryologist she said they were very small compared to last cycle.

We will meet with our RE on Wednesday. I am also going to get my hands on my records to review with another practice.

Where do you travel to for treatment?

Thanks for your support.

3/18/2014 1:58 PM
Words cannot express how sorry I am to hear about the results. I know how hard it is to go through all of that and end up with nothing.

I know that some consider PGD controversial but after three back to back miscarriages in one year I figured it was our best shot.

I have been taking the DHEA for over a week now and no side effects so far.

We are from Canada and travel to the States for treatment. I take it that you are from the USA?

We are meeting with our RE via telephone this Friday to see if we can proceed with a cycle in June.

Again, I am so sorry about the results. If you need a sympathetic ear I am here. People who have not experienced IVF don't get it a lot of times.

3/18/2014 12:25 PM
Hi. Well we have no embryos left. So disappointing. I am really not sure why they changed the protocol. we had better eggs last round. We will get together with our doc next week to discuss the cycles and next steps.
My cousin's wife is an embryologist in TX. She said that they RARELY do PGD. She said it is widely done in the Northeast. She said it is still controversial.
I think we may try again. How are you feeling on the DHEA? any side effects?
Are you in the US or UK?

3/16/2014 6:36 PM
Hey There!

Just checking in to see how you are doing. I hope your results come back great!

3/13/2014 6:45 PM
I am taking it on my own, based on my own research. It is a pill. My RE was non-committal about it. He said I could take it, but he feels it is unproven. I f we do another cycle it will be in May or June to give the supplement time to take effect. I feel at this point I have absolutely nothing to lose.

ARe you on the two week wait for your biopsy results then?

3/13/2014 2:59 PM
I'm sorry. I read to fast and messed up.
What did they say the DHEA would do? How is it taken? Is it a pill or injection? I think that be my next step if this cycle yields nothing.

3/13/2014 12:15 PM
No FET for is us as all embryos were bad. Just deciding if we will go ahead with my eggs. I started DHEA on Monday. I wish they could all just agree on what works. UGH!! Hang in there! I will be hoping for a good result and that you can proceed to a transfer.

3/13/2014 11:05 AM
Thank you! Yes. Aren't we always waiting for something when we sign up for this process. Blood results. Follicles to grow. So much waiting. I received the call today that we are down to 5 that are dividing. I am concerned that what may be left to test will be bad.
I've read on a few sites that people have used DHEA to help egg quality however I have also read that there is nothing that can be done to help eqq quality.
I plan to ask my RE when I see him next.
How are you doing with your wait till your FET?
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