Questions for those who've done FET & PGS

Aera11 · April 2017

I'm coming off a second failed fresh IVF with two 3-day embryos (ICSI + assisted hatching). I didn't have any embryos to freeze so we're starting over again. I don't see my RE for a couple weeks and I'm sure she'll answer these questions, but I thought I'd ask any of you who've gone through this.

Assuming we have embryos to test & freeze this next time, these are my questions:

•how long did it take for your PGS results to come in?
•what was the cost if you paid OOP? We will have to.
•if you did have any normals, did you transfer back your next cycle or how long did you have to wait?
•what is the protocol/process for a FET?

I've only done fresh but I think egg quality is our issue and I want to have these tested if we can this time. I'm 31, lining, levels, DH all check out perfect. I do acupuncture and take vitamins/supplements. Thank you, thank you

AngryBull · April 2017

I am so sorry your second cycle didn't work out, and that you are having to go through all of this. IF is so unfair and definitely tests your emotions. And I think you're brave and super strong for being able to go through multiple cycles.

I did PGS testing on my embryos. These are my answers:

It took 9 days for my PGS results to come back. The biopsies were sent out on a Monday and they came back Wednesday of the following week.

I am completely OOP. I paid $1650 for the PGS testing. That covered up to 8 embryos (I had 5, 3 came back normal) in a 9 month period. So technically I can send up to 3 more for testing until my 9 month period is over (June of this year) and not have to pay more. Anything over 8 costs an additional $225/embryo.

I have not transferred back any embryos. I have thin lining and unfortunately have had 5 FET cycles cancelled since I got the results back. But you mention you have good lining so this probably won't be an issue for you (my situation is quite unusual). Once you get the results back you really don't have to wait long to go into the FET protocol. The exact timing seems to depend on when you get your period after your retrieval and how long it takes to get your results back, but most people that I've seen are transferring about 5-8 weeks after their retrieval date. My transfer was scheduled for about 7 weeks after my retrieval (I have longer cycles).

There are a few different FET protocols. Sometimes an RE will go with a "natural" protocol - you pretty much take no drugs at all, you call the day of your period (day 1) to let them know your cycle has started, go in for a monitoring US around day 12 or so to make sure your lining looks good, and then if it does they transfer the embryo around day 20. Then there is a medicated protocol that seems pretty common where you take estrogen supplements for 15-20 days (either Estrace pills vaginally or orally or Vivelle patches, or maybe some combination of these), go in for the monitoring US around day 12-14 to make sure lining looks good, if so then you take progesterone for 5 or 6 days (either PIO shots or progesterone suppositories) and then transfer on day 6 or 7 of taking the progesterone (and you would then continue taking the estrogen and progesterone through the TWW and beyond). And then there are even more involved medicated protocols where you take not only the estrogen and progesterone but other drugs for blood circulation, anti-inflammation purposes, or autoimmune issues - like baby aspirin, Lovonox, prednisone or other steroids, etc. Your protocol will probably just depend on your RE and your history (I've done all three of the above).

You're already doing acupuncture so that should help you with any circulation issues. Personally I'm very glad I did PGS but I understand that it's not for everyone. But if you do decide to go for it it may end up saving time (and possibly money if you are paying for each transfer) by helping to eliminate transfers of genetically abnormal embryos.

I wish you the best of luck on your next cycle no matter what you decide to do.

Aera11 · April 2017

Thank you @AngryBull! I'm nervous either way but I feel like two failed rounds in a row means we need to try something else, especially when it's basically all OOP. You definitely had more embryos make it to fertilization than me, I've only had two each time. If I had higher numbers I wouldn't bat an eye at PGS testing bc I'd feel more comfortable knowing we could at least have the chance of one making it.

JuliaGoolia719 · April 2017

Good luck!

•how long did it take for your PGS results to come in? We retrieved on Jan 31, they sent the cells off for testing on Feb 6 or 7, we heard back on Feb 14 (the first year I've loved Valenines day lol) we had 2 make it to day 5 and both came back normal.

•what was the cost if you paid OOP? We will have to. I think we paid 800 for the 2 we had

•if you did have any normals, did you transfer back your next cycle or how long did you have to wait? We chose to wait till this month to transfer due to some trips we planned and to give my body time to heal

•what is the protocol/process for a FET? This is my first time but for me....I was on BC for 3 weeks, started lupron shots for a few weeks, added in estrogen patches (3 every other day as of now) and an estrogen pill vaginally at bedtime. Wednesday I started PIO shots, tomorrow I start Medrol (sp?) 4x a day, and then a z pack as well. We transfer Monday (holy shit) and if it works I'll be on the estrogen and PIO for the first trimester I think (along w pre natals and aspirin.

I have PCOS and DH has some MFI issues, luckily my lining hasn't been an issue, this is our first round of IVF/FET so I'm cautiously optimistic that we're past the hurdles and we'll be good from here.

liljoy-2 · April 2017

Hi,
For me it took 2 weeks for the results.
Insurance covered PGS because they figure chances are higher and they limit their costs. They also impose single transfer with a normal embryo.
I waited out a cycle in between to get my hormones in line, then did a "natural" FET, but I still took letrozole (important if you have any endometriosis) to prep the lining, hcg shot for progesterone support and a steroid around implantation. While it was successful, I'm still not fully sold on PGS, because two of my embryos were abnormal with a 75% probability, so there's still room for error. Plus, I read studies in Europe where they implanted abnormal blastocysts and 50% resulted in healthy pregnancies. Now I have a bunch of abnormal embryos that I don't want to let go of, in the chance they can turn out to be ok...But I don't know if in the US they can implant abnormal ones...

Aera11 · April 2017

Wow! Thank you both

PGS testing doesn't seem to cost any more than all the other IVF/IF expenses, so cost doesn't seem to be a reason not to do it.

I can't believe you're transferring Monday @JuliaGoolia719! I'm mobile bumping so I can't see you're siggy, will you transfer one?

@liljoy did your RE recommend a natural FET or was that your decision? That's what I would hope to do since all my other levels/lining are good, the less I inject into my body the better. I did read about the room for error and I guess nothing is really ever guaranteed. I guess my biggest question is how many retrievals can my body do before its time to stop? Bc if my re will allow a few more still, I may give one more fresh transfer a shot. I mainly want to test bc my gut is telling me I have bad of eggs..

JuliaGoolia719 · April 2017

@Aera11 we are just doing one, our clinic always tries for just one to reduce the risk of multiples, but especially with PGS tested embryos. If we hadn't tested we might have pushed for 2 but in this case I think just one is fine. Also, since I haven't ever been pregnant that we know of we kind of want to keep one in reserve just in case.

Aera11 · April 2017

Yeah that's smart! We've so far always done two but if we test and have any that come back normal, we may go one at a time. There are literally so many decisions in this process.

liljoy-2 · April 2017

I wanted a natural FET and the RE agreed that's the best option, especially since I didn't have any obvious uterus/lining issues.

JESSABER0414 · April 2017

@Aera11 ****tw*******
I didn't do PGS because it was $4000 (I regret not shopping around to see if there were other options) and had a miscarriage because of abnormalities with the embryo for my first FET. Just wanted to give that side. I'm in Kentucky, insurance not taken by the lab or the genetic lab.

cashewchicken · April 2017

@Aera11- I have done PGS, but I have not yet progressed to FET.

My PGS results came back after 2 weeks. The cost was $6250 for 6 embryos (expensive, I know). I think it may be more expensive because it's NGS test rather than aCGH.

For me PGS made sense since I am older (38, turning 39 soon) and I have polycystic ovaries, which means that I have a lot of follicles and after stimulation, can produce many eggs. PGS is the only way I can weed out bad embryos from good ones.

Aera11 · April 2017

I'm so sorry for your loss @JESSABER0414

but thank you for sharing. My second m/c was from a chromosomal abnormality and that's why I'm leaning towards testing since I did two rounds of IVF with two perfect 'looking' embryos each, they still could've had abnormalities and maybe that's why I'm 0/4.

Yeah it sounds like it's about two weeks, which is better than I thought @cashewchicken! Some of these tests take forever. Do you know what protocol you'll do for your FET?

cashewchicken · April 2017

@Aera11- I haven't discussed my FET protocol with my RE yet. Our plan was to bank embryos now so that I don't have to go through this again in my forties for baby #2. My guess is it'll be a medicated protocol.

Aera11 · April 2017

Ohhhh ok, yeah that makes sense if you're banking. I'm tempted to bank if I can because we'd love more than one and at the rate this is taking it will never happen.

Ash_SE · April 2017

I have the protocol with just estrogen and progesterone. However PGS and FET cost more than just PGS cost. You have to pay to biopsy the embryos ( $2475) paid to RE lab, Freeze cost ( $1800 upfront and $600 each year ) paid to the RE lab, PGS costs ( $1350 for 8 embryos ) paid to PGS lab, and then defrost fee to use a embryo to transfer ( $1500 per Transfer) paid to RE lab. So total for the process is more than $ 7K in fees not paid by my insurance. Them each FET afterwards has the defrost fee.

cashewchicken · April 2017

@Aera11- My RE recommended banking 2 PGS normal embryos per baby, assuming that there are no problems with me carrying the baby. So for me and my husband, ideally we'd like to have 5-6 PGS normal embryos (we would like to have 2 kids, maybe 3), but because we're having such difficulties with banking, we are happy with 3-4 embryos, too. You're only 31, so you still have some time to decide. The upside to banking now is that your chance of getting euploid embryos are higher. And IVF treatment while taking care of a child may be difficult (difficult enough for me, and I have no child). But IVF technologies are improving every year so doing IVF later may not be such a bad thing either...

Aera11 · April 2017

Thank you @Ash_SE, I'm sorry you're going through this too. Infertility is a medical condition and insurance companies really should pay for more of the treatments we all need.

@cashewchicken you make such a good point when you're mentioning how difficult IVF is and then add taking care of a child on top of it. So far I have had an easy time with the shots and had little to no side effects, but I have a horrible time with the retrieval. I don't do well with anesthesia so I throw up/dry heave the entire day and have trouble breathing so I can't lay down. I bounced back the first time but this past time I had a really hard time, so I am not looking forward to doing that back-to-back but it will be better to do it now than later.

[Deleted User] · April 2017

I can't speak to all your questions as we are not there yet. But at our clinic OOP it is $1,700 for them to biopsy any embryos, (I believe that's a flat fee per cycle), and $2,500 payable to the testing facility up to 10, $125 per embryo over ten. Everyone's insurance can be totally different what they cover. Then it's $1,000 to freeze/store the first year, (included in the estimate for ER, but not always covered by insurance), and $1,200 to store each year after that. The FET woukd also include a thaw fee I'm sure, but the overall FET cycle was like $5k total vs more like $25k for the initial ER +meds +anesthesia +biopsy +testing etc.

AlohaKumu · April 2017

@Aera11 - we haven't done IVF yet, but we are going to get PGS testing when we get to that stage. (Our docs strongly recommended that we do so, especially since they said there would be a higher percentage of abnormalities with DH's chromosome issues.) We've been told it will take 5 days to get the results. Normally the clinic charges $5300 for 8, but we are getting a discount, which means we will be paying $2500 OOP. (I wish everything was covered by insurance, but I recognize that we are extremely lucky to have all meds and prior tests covered.) I would much rather just pay the money for PGS testing to have the best chance of a viable pregnancy. Hopefully we will be successful!

Aera11 · April 2017

Thank you @BusinessWife!

I agree with you @AlohaKumu, I want to have the best chance possible at a healthy pregnancy/baby. We didn't have a need to initially do any PGS testing because DH and I don't carry anything (we did karyotype testing after our *TW* second m/c) and we are young, but I feel like I definitely have an egg quality/quantity issue and want to give us the best chance possible. Not to mention, it's so much on our bodies to go through this, I just want to get as much out of each round as possible now that we've had two failed IVF's.

artemis618 · April 2017

Hi @Aera11! A little late, but just wanted to add my experience to date. PPs have made some excellent points.

•how long did it take for your PGS results to come in? Biopsied day 6 (at least 4 of the 6 biopsied - I didn't even find out that two more made it to blast until I got the results) which was Friday, got the results the following Monday afternoon (so 3 calendar days, which after reading this sounds unusual). No clue to where they sent the samples, but my Dr. said that we'd hear back within the week.

•what was the cost if you paid OOP? We will have to. OOP - $3,850 covered $2250 biopsy/handling and up to 8 embryos ($200 additional per embryo had we been so lucky)

•if you did have any normals, did you transfer back your next cycle or how long did you have to wait?
Not there yet as we only had one and would like to try another cycle to get another (similar reasoning to that of @cashewchicken - more with respect to the age thing), but I believe RE said I would have waited for AF to show (10-14 days post ER), then maybe bc for a few days for scheduling, then estrace for 3 weeks before (and probably the progesterone in there at some point). Does that count as the "next" cycle? (I *think* it's only one period after ER, but again...)

•what is the protocol/process for a FET?

...I haven't gotten there yet myself. The more experienced ladies have provided great and helpful responses to this. I do want to inquire about natural after reading this discusssion, but we *may* go back to trying naturally for a bit after this cycle and leave whatever we end up with on ice - which scares me a bit because 1/6 normal is not great, but I'm not sure that IVF agrees with our embryos.

liljoy-2 · April 2017

Hi ladies,
I feel compelled to share my experience with you because I think it has so many ethical and emotional implications. Of course, it is ONLY my experience and it may not extrapolate, but I still think it is very relevant. I had a bunch of blastocysts and did PGS because I wanted to avoid m/c or Down's (over 35). Only a couple returned normal, but the results had a few things that puzzled me, and since the alternative was to discard the embryos, I decided to retest instead, with a different lab (after also reading articles about abnormal embryos being implanted in Europe and developing normally or retested with different results). Guess what?? More returned normal, PLUS the rest of abnormal ones had totally different abnormality profiles.

So I'm sitting here thinking, how many normal embryos are killed each day after PGS results? How many women who can only produce one embryo that turns out abnormal end up unsuccessful just because of throwing away the embryo? This technology is only experimental, the labs either make awful mistakes OR the embryos are mosaic and good cells may exist that can then lead to self-correction in the embryos. Playing God is awful and heartbreaking. I still don't know what to do with my "abnormal" embryos in this case because I definitely don't trust the results anymore..

Hopeful_mom · May 2017

liljoy how were u able to retest? I heard they discard the sample after the tests at the lab are done. I always think your view is very interesting and true! This process is so hard and they testing makes it that much tougher!

@Aera11 we've been on boards together and I'm really sorry you haven't been successful. I still go back and forth on PGS testing. I wish I wouldve done it from the beginning then maybe I'd still be pregnant with my lil girl (I knew my lil girl was normal as she was tested after the mc). I became pregnant with twins on my fresh 3dt, so I really wanted to do that again BUT my last IVF cycle my 3 tested embryos all came back abnormal. If I did the fresh transfer again that wouldve taken more time away and I can't afford that. I would say PGS testing costs about 4k for about 8 embryos.

I really didn't want to do pgs and I know i'm lucky that I have had blasts to send out as my very first cycle I only produced 3. This process just sux!! Through 5 cycles I've retrieved 21 eggs, 9 blasts and sent to pgs, and the other 3 I transferred where I MC my twins. Hoping this last batch of 6 will give me some normies. Its hard to except for me that its my age that is ruining my chances BUT its why its needed for me at this point unfortunately. You do have time on your side so you can use that as some others have mentioned here.

Lastly I HATE that insurance doesn't cover what they should, I'm OOP for all. Regardless viagra is affordable for a man so he can have an erection. I think a woman having a baby should be just as affordable as a mans erection!

liljoy-2 · May 2017

@Hopeful_mom Unfortunately the only way to retest was to thaw, rebiopsy and re-freeze...but since the only alternative was to discard them, I chose to do this. They survived the process and came back normal...go figure.

Hopeful_mom · May 2017

liljoy wow that is so impressive!! uve got some fighters! how many did that work for?

Aera11 · May 2017

@Hopeful_mom where are you now in your cycle? I took a small bump break while I was in limbo and so much has been happening on this board that I can't even catch up! Are you doing another ER with PGS testing? DH and I met with my RE today and she says she doesn't know why I am not pregnant, the only thing that has been 'below average' was the number of eggs retrieved each time (first two, then six). She says since the numbers are so low, I am not an ideal candidate for testing because I most likely won't end up with (m)any that make it to blast/day 5. She is offering uterine scraping/biopsy to see if that may help and I think I am going to do it. It can't hurt to try something new. I am trying so hard to be patient but two years of trying with an RE and I am starting to feel maxed out. And I agree, insurance is a joke. Infertility is a medical condition that should be covered, at least to a better extent.

caseyw8784 · May 2017

@Aera11 - i'm a little late to this party, but i just caught up reading all the posts on this thread. Insurance coverage is truly ridiculous. Can I ask what state you are in? I have a friend in my state who had to do IVF, but her insurance through work is based in a different state, and she did not realize that MA mandates that a certain amount/procedures is covered, until after she had done a couple cycles. Since then I learned that a handful of other states have mandates that aren't really advertised as well as they should be!

We did PGS testing, here are my answers:

- we had four Day 5 embryos that were biopsied and frozen. It took 2 1/2 weeks to get the results, but we were also doing PGD testing for a single gene disorder, so I think that testing took the majority of it.

-We live in MA, so a lot of our costs are already covered by insurance. My doctor was able to appeal that the remaining costs (testing, etc) got covered since we are doing this for preventative purposes, so we've been so lucky that the only costs we have to pay are the appointment and prescription copays.

- 2 of the 4 embryos tested normal. My RE had me wait a full cycle before starting FET prep (ER was March 12, FET will be this coming Wednesday May 10)

- My RE does medicated cycles, so on CD 2 of this current cycle I started Estrace. Yesterday (CD 13) I had the monitoring bloodwork/ultrasound appointment, and last night I started 5 nights of PIO and antibiotics for the transfer this coming Wednesday. Will be continuing the Estrace and PIO at least until the beta on May 20th, and will go from there.

Good luck with your next cycle! Have you scheduled the uterine scraping yet? Is there a different ivf protocol/dosages that you could do that may yield more eggs? FX

Hopeful_mom · May 2017

@Aera11 we all need a break this isn't any easy process! the first thing I was going to ask you was the same as caseyw8784 Is there a different ivf protocol/dosages that you could do that may yield more eggs? I know not getting "what your suppose to" sucks!! My first cycle I got 3, I almost didn't make it to ER and I'm OOP so its a lot just for 3 but I wanted to see if my eggs were healthy. No yes I got pregnant with twins and MC BUT at least I know that I could make a healthy embryo. In my 4th cycle I produces 10 eggs what my RE thought my body would produce. However those blasts came back abnormal...so is more really better?? I"m very fortunate I got 2 normies back from my previous cycle but its not enough if I'm hoping for 2 kids so i'm doing another cycle in hopes it can get me to an FET sooner then later!! I'm currently in day 3 of stemming in cycle #6, i can't even believe it myself thats the number I"m up to. I dont want to be a professional IVFer! All your levels AMH and FSH are on point? Whats your AFC? My RE considered me boarder line DOR since my AMH is low, and I wasn't responding as I should BUT my AFC was fine when I first started this process. Now a year later my AFC seems to have declined quite a bit...its still doing its job so I'm not gonna get to down about it. Hopefully the scrapping will be just what you need!!

Aera11 · May 2017

@caseyw8784 I am in Michigan, my husband's company offers pretty good insurance but we still have to pay for a good chunk of our IF/IVF out of pocket. A small portion of procedures are covered but we pay for the meds OOP, which are half the cost of the process.

Thank you so much for your insight

I think testing isn't something we are going to pursue any more. After sitting down with our RE yesterday, we aren't really ideal candidates. I think I will discuss with her other protocol options. Another bump'er messaged me about her process and said she changed her protocol and more than tripled her egg number. I think we will try this scraping/biopsy and if we have another failed round, I will definitely ask my RE about different treatment options. We don't have a date scheduled yet but she said they do the biopsy a few days before I am supposed to start my period. I will most likely be in the June IVF board when we get one up.

@Hopeful_mom breaks are definitely necessary. As much as I love supporting and participating whether I am benched or active, it does become a daily reminder of the pain I have experienced with infertility + loss.

I don't know if I can make a healthy embryo, I had two losses (one of which we had tested and know there was a chromosomal issue), but the last four day-3 embryos we had 'looked perfect'...and obviously that is from what the embryologist and RE could see without any testing. I am hoping this biopsy will be the thing we need to make one stick, but I am not holding my breath. If it doesn't make any difference, I will definitely be asking my doctor about different protocol options. We did discuss donor eggs so I am prepared for that as another option, I just don't want to give up on my own eggs and having a biological child just yet. Thank you again for your support! This journey is long and so lonely at times.

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