Infertility

PGD Ask Me Anything/Tell your story

I work for a company that primarily does PGD on IVF embryos. One branch of the company does testing on molecular disorders (CF, sickle cell, etc), while I work for the branch that does the more straight-forward chromosome testing. So, I'm not sure if there's a need for this, but if anyone out there has any questions at all about PGD testing, our process, results, etc, please ask me! If I don't know, I'll ask around until I find someone that does. 

Thanks!
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Re: PGD Ask Me Anything/Tell your story

  • I have a few. We did not PGD before my embryos were frozen. Can frozen embryos be thawed, biopsied and re-frozen? Also, what is the difference bewteen CCS and PGD? How much does either costs?  Thanks for offering your help.

    Three ectopic preganacies in left tube in 1999, 2003 and 2004. HSG in 2010 concluded left tube blockage. IUI with femara in 2012 BFN. IVF #1 June 2013, 20 retreived, 14 mature, 12 fertilized via ICSI, one transferred, four frozen, BFN.  FET in September 2013 - BFN:( FET #2 April 2014 - BFP!!!!

    Whoever watches the wind will not plant; whoever looks at the clouds will not reap. As you do not know the path of the wind, or how the body is formed in a mother’s womb, so you cannot understand the work of God,the Maker of all things. <?xml:namespace prefix = o />

    Ecclesiastes 11 4:5  

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  • So CCS and PGD (technically PGS) are pretty much the same thing. 

    CCS - Comprehensive Chromosome Screening
    PGS - Preimplantation Genetic Screening [of the chromosomes] 

    The difference is that PGS can include things like FISH, which only tests a few specific chromosomes. CCS, as its name implies, tests all chromosomes. My company does both FISH and PGS, via a method called array CGH. 

    I hope that explains it and doesn't make it more confusing! There's a great post here: https://www.ivftraveler.com/blog/pgd that breaks down the difference.

    On your other question: yes, that is possible. Using vitrification, there's something like a 95% success rate in the thawing process. So we often get cases that have been thawed, biopsied, and re-frozen. Although, we generally see it where cells are thawed, biopsied, and any normals fresh transferred. Depending on where you live, that might be possible. If your embryos are still at day 3, they can be thawed and biopsied at day 3, then allowed to grow to day 5 if overnight results are not available in your area. 

    I think the costs are somewhere in the $3000 range for up to 8 embryos (this depends on your center, whether they are overnight results, etc, so I can't give you an exact number, but that's the scale of the cost). 
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  • Thanks for the info. I only have three of which two are 6-day and one is 5-day. Give the cost and risks it doesn't make sense for me to PGD, but I wanted to understand it better.  Thanks a bunch!

    Three ectopic preganacies in left tube in 1999, 2003 and 2004. HSG in 2010 concluded left tube blockage. IUI with femara in 2012 BFN. IVF #1 June 2013, 20 retreived, 14 mature, 12 fertilized via ICSI, one transferred, four frozen, BFN.  FET in September 2013 - BFN:( FET #2 April 2014 - BFP!!!!

    Whoever watches the wind will not plant; whoever looks at the clouds will not reap. As you do not know the path of the wind, or how the body is formed in a mother’s womb, so you cannot understand the work of God,the Maker of all things. <?xml:namespace prefix = o />

    Ecclesiastes 11 4:5  

    image

     

    BabyFruit Ticker

  • PGD what does your doctors think about doing the test on already frozen embies? Then they would need to be re-frozen, my RE says there is not a lot of data out there but we could try? Kinda scary. Also, does any of your labs see conditions first or just look at each embryo then identify if there is an issue? I have PCOS and yielded a high quantity but who knows about the quality. my husband has severe mfi extremely low in every category. we have 11 frosties and going to decide after our karyotyping panel comes back if we are going to do a fresh ivf cycle or go forward with possibly testing our already frozen embies.

      us      dogs

    Me: 28, DH: 30 TTC since March 2012
    PCO & MTHFR Homozygous/Severe MFI (undescended teste & double hernia as baby)

    12/12: 50mg clomid= bfn
    1/13: 100mg clomid= bfn
    2/13: 100mg clomid= bfn 
    6/13: IVF/ICSI (x1 4AA)=BFFN ~49R, 44M, 33F, 14 frosties  OHSS
    8/13: FET #1 (x1 4AA)=First EVER BFP 4dp5dt!! d&c @ 6.5 wks, blighted ovum

    10/13: FET #2 (x2 4AA)= BFP 4dp5dt! Twins!!, perfect u/s then spontaneous m/c @ 5 wks
    11/13= RPL/Karotyping= MTHFR Homozygous c667t
    1/14= FET #3 our 2 year anniversary & hopefully our miracle

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      pumpimage

  • @weeklyplanner I never knew the difference very helpful info. How much does CCS cost?

      us      dogs

    Me: 28, DH: 30 TTC since March 2012
    PCO & MTHFR Homozygous/Severe MFI (undescended teste & double hernia as baby)

    12/12: 50mg clomid= bfn
    1/13: 100mg clomid= bfn
    2/13: 100mg clomid= bfn 
    6/13: IVF/ICSI (x1 4AA)=BFFN ~49R, 44M, 33F, 14 frosties  OHSS
    8/13: FET #1 (x1 4AA)=First EVER BFP 4dp5dt!! d&c @ 6.5 wks, blighted ovum

    10/13: FET #2 (x2 4AA)= BFP 4dp5dt! Twins!!, perfect u/s then spontaneous m/c @ 5 wks
    11/13= RPL/Karotyping= MTHFR Homozygous c667t
    1/14= FET #3 our 2 year anniversary & hopefully our miracle

    2 Image and video hosting by TinyPic 

      pumpimage

  • @kjf114 I'm at one of the two clinics in the country that does the CCS testing. The cost is $6850 for up to 10 embryos. Also @olookasquirrel stated that the thaw rate is 95% but depending on the lab...it could be higher than that. My clinic's thaw rate is 98%
    Me: 36 - stage 2/3 endometriosis, diminished ovarian reserve (DOR), poor responder
    Hubs: 37 - low morphology
    TTC since 2008

    Referred to local RE: 6/22/2010
    HSG + Saline sonogram: 8/13/2010
    IUI #1: BFN 09/2010
    IUI #2: BFN 10/2010
    IUI #3: + acupuncture: BFN 12/26/2010
    Laparoscopy: Diagnosed and cleaned out endometriosis 1/9/2012
    IVF#1 (ICSI): Long Lupron + acupuncture = Cancelled 1/11/2013
    Second opinion phone consult with CCRM: 5/13/2013
    ODWU at CCRM: 6/10/13
    IVF #2 (ICSI): Estrogen Priming Protocol - ER 9/28/2013 = 7 eggs retrieved, 4 fertilized (banked and frozen at one cell stage for PGD testing with embies next retrieval)
    IVF #3 (ICSI): Estrogen Priming Protocol - ER 1/10/14 = 8 eggs retrieved, 3 fertilized. My 4 from previous cycle were thawed at Day 1 to grow to Day 5 blastocyst phase with my 3 fresh embryos. Only 2 embryos made blastocyst and were biopsied for CCS testing. Both were abnormal. Nothing to transfer from either cycle. Told that I should move onto other options.Grieving loss of any biological children with my genes.

    My blog: Dreaming of Dimples

  • @dreamingofdimples. Thank you for this info. I will start looking into this.

      us      dogs

    Me: 28, DH: 30 TTC since March 2012
    PCO & MTHFR Homozygous/Severe MFI (undescended teste & double hernia as baby)

    12/12: 50mg clomid= bfn
    1/13: 100mg clomid= bfn
    2/13: 100mg clomid= bfn 
    6/13: IVF/ICSI (x1 4AA)=BFFN ~49R, 44M, 33F, 14 frosties  OHSS
    8/13: FET #1 (x1 4AA)=First EVER BFP 4dp5dt!! d&c @ 6.5 wks, blighted ovum

    10/13: FET #2 (x2 4AA)= BFP 4dp5dt! Twins!!, perfect u/s then spontaneous m/c @ 5 wks
    11/13= RPL/Karotyping= MTHFR Homozygous c667t
    1/14= FET #3 our 2 year anniversary & hopefully our miracle

    2 Image and video hosting by TinyPic 

      pumpimage

  • We are doing PGD and it was $3800 to develop the probe (or test) that they use and then use it on the cells we sent from each embryo. News flash to us, it's STILL $3800 the second time around. So even though the probe is developed and no matter how many they test it's still the same price....it's that PER cycle they said. Makes no sense but whatever....I'm still thankful they can do it and hope it results in a happy, healthy baby. I wish insurance could see this as a beneficial move for them and cover it, but so far, no luck.
    2013- 2 IVF cycles with PGD to prevent genetic disorder from being passed on. Both BFFN :(
    2/2014 pregnant!  EDD 10/17/2014

    All always welcome! :)
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  • @taylorh84 yes I agree I read something regarding winfertitly (what I use for coverage) having covered ccs earlier. I would try my everything to make a case if it comes to it to why this test would save 10s of thousands. But who knows what beholds yet.

    @weeklyplanner thank you for this info too!

      us      dogs

    Me: 28, DH: 30 TTC since March 2012
    PCO & MTHFR Homozygous/Severe MFI (undescended teste & double hernia as baby)

    12/12: 50mg clomid= bfn
    1/13: 100mg clomid= bfn
    2/13: 100mg clomid= bfn 
    6/13: IVF/ICSI (x1 4AA)=BFFN ~49R, 44M, 33F, 14 frosties  OHSS
    8/13: FET #1 (x1 4AA)=First EVER BFP 4dp5dt!! d&c @ 6.5 wks, blighted ovum

    10/13: FET #2 (x2 4AA)= BFP 4dp5dt! Twins!!, perfect u/s then spontaneous m/c @ 5 wks
    11/13= RPL/Karotyping= MTHFR Homozygous c667t
    1/14= FET #3 our 2 year anniversary & hopefully our miracle

    2 Image and video hosting by TinyPic 

      pumpimage

  • cachoquecachoque member
    edited November 2013
    The link to the lab/procedure that our RE used for our PGS is below. They are calling it PGS but describe it as "examining all 24 chromosomes." So is this PGS or CCS?  https://www.genesisgenetics.org/pgs.html

    ETA: Forgot to mention, my fresh was biopsied on d5, overnight tested and then transferred on d6. Sounds like CCS but still not 100% sure? Ours was a $3500 adder for up to 8 embryos.

    Also, I did want to point out - not to be negative :-/ - but both our fresh & FET were text book cycles and both passed the screening, yet still BFN. So, it happens. I just hate to think some people might think a normal embryo = guaranteed b/c I'm proof it's not. :( Then again, those were SETs and in all of this I've lost confidence in SETs too... ok, I'll try to think positive now!!! 
    image
    TTC #1 since August 2011 w/ unexplained IF
    09/12-11/13: 3 TIs, 3 IUIs, ICSI/PGS IVF & 2 FETs
    08/14: Our little miracle has FINALLY arrived - 3 years after we started trying!
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  • @cachoque same happened to us..everything was normal, we did PGD and still BFN.
    2013- 2 IVF cycles with PGD to prevent genetic disorder from being passed on. Both BFFN :(
    2/2014 pregnant!  EDD 10/17/2014

    All always welcome! :)
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  • TaylorH84 said:
    @cachoque same happened to us..everything was normal, we did PGD and still BFN.
    I want to echo this.  We had 2 normal, and I miscarried.  My doctor made PGD sound like a pretty sure thing, and I am proof it is not.  Do your homework, and don't get your hopes up like I did.  I was blindsided when I lost my babies.  I don't want to be negative, but I think it's important to be real about what could happen.
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  • jlcrane78 said:
    TaylorH84 said:
    @cachoque same happened to us..everything was normal, we did PGD and still BFN.
    I want to echo this.  We had 2 normal, and I miscarried.  My doctor made PGD sound like a pretty sure thing, and I am proof it is not.  Do your homework, and don't get your hopes up like I did.  I was blindsided when I lost my babies.  I don't want to be negative, but I think it's important to be real about what could happen.

    @jlcrane78, we felt the same way! We were definitely overly confident and when we went to our RE we got some explanation of "sometimes it just doesn't work....that's the most frustrating thing when everything seems to go so well and then it doesn't work." You're telling me!
    2013- 2 IVF cycles with PGD to prevent genetic disorder from being passed on. Both BFFN :(
    2/2014 pregnant!  EDD 10/17/2014

    All always welcome! :)
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  • @weeklyplanner - My company does CCS on day 3 or day 5/6 embryos. Day 3 is always done with labs that are too far to make it for the biopsy + travel time and have samples arrive at 5pm, but we look at all chromsomes from the day 3 samples (again, unless you choose to do FISH, which only looks at a subset of chromsomes). But for specific regions of the country we can do day 5 biopsy, day 6 transfer. I should know - I've been in the lab many days at 4 in the morning to make sure results are reported out by transfer time! 

    @cachoque - definitely, positive screens don't guarantee a pregnancy. What we do is better the odds, because you're only transferring normal embryos. I see cases come through where the couple has 12 embryos that look good to the embryologists - but only 1 or 2 are chromosomally normal. 

    We also reduce (though don't eliminate) the risk of a miscarriage later down the road due to abnormalities that would implant and grow but not survive. 

    And yes, you had CCS (we call it PGS, but we call everything PGS so it's easy to see where outsiders would get confused). It's the same system and platform that we use but not my company. 

    As a side note: we techs all really really hope for normals for every case. It's pretty sad when we can't report out anything hopeful, because we know that it breaks our patient's hearts. 

    Sorry if the formatting's not good in my post - I'm very very new here!
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  • @cachoque - definitely, positive screens don't guarantee a pregnancy. What we do is better the odds, because you're only transferring normal embryos. I see cases come through where the couple has 12 embryos that look good to the embryologists - but only 1 or 2 are chromosomally normal. 

    We also reduce (though don't eliminate) the risk of a miscarriage later down the road due to abnormalities that would implant and grow but not survive. 

    Thanks for your response! Yes, as sad as I am that nothing in life is a guarantee (what is & aren't we all! ;) ) I absolutely appreciate that we were able to identify & avoid 3 of my 8 embies that never stood a chance - and can't help but think about all the extra heartache and wasted $$ that would've resulted.     
    image
    TTC #1 since August 2011 w/ unexplained IF
    09/12-11/13: 3 TIs, 3 IUIs, ICSI/PGS IVF & 2 FETs
    08/14: Our little miracle has FINALLY arrived - 3 years after we started trying!
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