Infertility

Has anyone been in an IVF clinical study?

My doctor (who I trust and have a good history with) just recommended a clinical study that would cover the cost of IVF completely.  We haven't tried IVF yet due to cost and overall concern for it.  But this seemed to fall in our lap at an unexpected, yet, somewhat ideal time.  

We are trying to discuss this rationally and not be impulsive because the word "free" was attached to the idea. 

The study is for a more advanced type of genetic testing.  I'm concerned about the long term problems that may come up.  The information they gave us said there is little impact on me or embryo because the study is focused more on the lab side of things.  I still want as much info as I can get.

Has anyone participated in a study?  Similar to this or otherwise?  Am I bat-shit crazy for considering being a guinea pig?

Help...

Re: Has anyone been in an IVF clinical study?

  • I'd definitely get more information. Given that I'm stuck with IVF to have a realistic shot at success and I'm paying OOP, I'd strongly consider it. YMMV depending on your situation.


    ***siggy warning***

    Me: 29; DH: 53
    TTC since February 2013 --- mild thin PCOS (or not, depending on which RE you ask), MFI

    TI#1: BFN (April 2014; Clomid 50mg x5 days, Estrace x5 days, Clomid 50 mg x4 days)
    IUI#1: c/p (May 2014; Letrozole 2.5 mg x5 days, Estrace x5 days, Bravelle 75 IU x10 days)
    IUI#2: abandoned... O'd early & DH hormone issues (June 2014; Letrozole 2.5 mg x5 days, Bravelle 75 IU x2 days)
    IUI#2.1: BFN (July 2014; Letrozole 2.5 mg x5 days, Bravelle 75 IU x4 days)

    Moving on to IVF. (Why we're moving on to IVF)

    IVF#1 (w/ICSI): BCP 9/9-9/23. Gonal-F, Ganirelix, Low-dose HCG (antagonist protocol). 41R/35M/32F... 2 transferred on 10/14, 14 frosties! On cabergoline to help avoid OHSS. BFN, possibly because of 90% drop in estrogen and progesterone a few days after ET.
    FET#1: Transferring 2 on January 8. BFP! beta#1 (1/17): 408, beta#2 (1/20): 1310, first u/s scheduled 2/5

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  • I think as long as you are ok with the parameters of the study and giving up some of your decisions (most of the time you don't get to pick how many embryos are transferred, what day the transfer will occur on, or whether or not you do genetic testing), then go for it.

    I would jump at the chance for a free IVF cycle, but my viewpoint is skewed since we have already paid for 3 IVFs and 1 FET OOP and are getting ready to start our 4th.  I also like the idea of maybe helping advance medical treatments for future IVF patients.

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    TTC #1 since August 2011

    My Blog

    September 2012: Start IF testing

    DH (32): SA is ok, slightly low morph, normal SCSA  Me (32): Slightly low progesterone, hostile CM, carrier for CF, Moderately high NKC, High TNFa, heterozyogous mutated Factor XIII, and +APA

    October 2012-May 2014: 4 failed IUIs, 3 failed IVFs, and 1 failed FETw/donor embryos

    November 2014: IVF w/ICSI #4 Agonist/Antagonist with EPP and Prednisone, Baby Aspirin, Lovenox, and IVIG for immune issues.  Converted to freeze all due to lining issues.  2 blasts frozen on day 6!

    January 2015: FET #2 Cancelled due to lining issues

    April 2015: FET #2.1


    PAIF/SAIF Welcome!

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  • As long as there are no crazy clauses, I'd think you'd be BSC to turn it down!  IVF itself...as a procedure...is really not that bad.  The days between ER and ET are awful and the whole process is very stressful and emotional.  But the actual processes are not so bad.  I jumped into it before I felt super ready and have never regretted it.  Good luck with your decision. 
    Me: 34 | He: 40
    TTC since 08/2012
    DX: DOR




  • I think that as long as you are ok with the terms of the study, then you should take a chance and go for it.  As others have said, you won't get to decide how many embryos are transferred, what day etc. but most likely, they will be making those decisions for you, based on realistic, well thought out plans.  I'm totally OOP, and if I qualified for a study, I'd do it.  Also, you might help others down the road, because of your participation.  So, that's nice too :) 
  • @ronniesgirl1981--I'm with you. I don't really think that anybody can ever be totally ready for something unknown, but I was definitely not either. We had no idea we were infertile on the first day of March of this year, and by May I was on stims. I have not done a study, but in terms of the experience in general, I agree with others that the emotional is way harder than the physical. 
    Me: 28, no diagnosis  DH: 33, MFI, severely low morphology, diagnosed 3/14
    IVF #1: May/June 2014: 10R/8F, 1 morula transferred = BFN, nothing to freeze.
    IVF #2: July/August 2014: 18R/12M/8F, 2 blastocysts transferred = BFN, nothing to freeze.
    IVF #3: October/November 2014: 22R/17M/15F, 2 early blastocysts transferred = BFN, nothing to freeze.

  • cls78cls78 member
    edited September 2014
    PAIF hope you don't mind me responding! ***Siggy Warning***. ***BFP warning*** I participated in the Nexgen Study with RMA NJ and got my IVF and Embryo storage for 1 year for pretty much free. I think as long as you are ok with the requirements then go for it. The study I participated in was a double blinded study Control group vs Selected Group w/ DNA sequencing. It required a double embryo transfer. (40-60% chance of multiples) I was also not informed a whole lot through the process, but I did get a 20,000 plus cycle for free at on of the best clinics in the country. I won't find out if I was in the study group or control group until after I give birth, but I will be getting all the information sometime in Jan/Feb 2015. I am 21 weeks pregnant with twin girls and I am pretty sure I was in the study group if I have to guess. ;). Good luck deciding. I don't have one single regret. Feel free to ask any questions. :).
    TTC since May/June 2012 
    Sept 2013 testing:
    SA #1 Low motility (17%) 
    SA #2 Lower sperm count, but much higher motility
    CD 3 Bloodwork and ultrasound - Normal HSG - Clear tubes 
    Oct/Nov 2013 Cycle 1 with RE 50 mg Clomid + Ovidrel + IUI BFN  
    Nov/Dec 2013 Cycle 2 with RE 50 mg Clomid + Ovidrel + IUI BFN 
    Jan/Feb 2014 Cycle 3 with RE 50 mg Clomid + Ovidrel + IUI BFN 
    2/20/14 Follow up consult RE recommends IVF with ICSI 
    3/10/14 New patient consult with RMA NJ 
    3/11/14 AMH and other Bloodwork to prep for IVF with ICSI at RMA NJ
    3/28/14 Saline Sonogram - All good
    March/April 2014 IVF #1 Antagonist Protocol
    BCP/Bravelle/Menopur/Ganirelix
    4/16/14 ER 26 Retrieved!!!
    4/17/14 Fert Report 22 Mature 21 Fertilized w/ ICSI
    4/22/14 Report #2 15 BLASTS
    5/24/14 FET!!!  (Transferring 2 snowflakes)
    6/2/14 Beta #1 575!!! :)
    6/4/14 Beta #2 2060!!! :)
    6/11/14 1st Ultrasound...Saw 2 Gestational Sacs!!  Beta #3 34,312!!! 
    6/18/14 2nd Ultrasound...Heartbeats!! Baby A 112bpm Baby B 117bmp <3 Beta #4 172,080!!!
    6/25/14 3rd Ultrasound...Heartbeats!! Baby A 150bpm Baby B 158bpm <3 Beta #5 232,134!!! 
    7/3/14 4th Ultrasound...Heartbeats!! Baby A 173bpm Baby B 162bpm <3 Beta #6 269,228!!!
    Graduated from RMA!!  First appt with OB 7/8/14

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  • If someone was magically going to pay for IVF, I'd do almost anything.  The most stressful part of all of this has been financing it.




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