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Gleeve and freezing your eggs


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#1 KaraYeoman

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Posted 06 September 2011 - 11:40 PM

Has anyone taking Gleevec or about to do so frozen their eggs or are going to?



#2 GerryL

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Posted 07 September 2011 - 01:50 AM

Probably a good idea depending on your age and how long it takes to get to PCRU.



#3 Tedsey

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Posted 07 September 2011 - 03:00 AM

I agree with Gerry.  If you are young and/or at child-bearing age and want kids, it may be a very good idea.  Who knows how long it could take to achieve a deep enough response to chance a pregnancy?  With heartfelt blessings to you and a quick recovery,

Tedsey



#4 jjg

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Posted 07 September 2011 - 03:38 AM

Hi Kara,

I was dx just before christmas last year and we did 2 IVF cycles before I started Gleevec mid Feb. The docs were not stressed about me taking an extra 7 wks to start treatment because I was dx very early -> WBC 13,000. One thing for sure by the time I got into the 2nd cycle I was hanging out to start treatment.

My situation is both similar and different to yours. I turned 38 the day of my 2nd egg retrieval so we do not have time on our side, you do. I read in your other post that you are to be married in May - congratulations!!! We were also about to get engaged when I was dx. In the end we were both engaged and married in between dx and starting treatment. My Dad was dying of lung cancer so when we were engaged it was like well lets see if we can get married while he is still with us but we missed by 8 days. For most of us the first 6 months is the hardest with side effects so it's good that this will be over before your big day. The in sickness and in health part of getting married is more real now and having a partner who actively chooses you, CML and all is even more special.

We didn't freeze eggs rather we froze embryos, or to be more specific we froze just the one embryo from our two cycles. We don't really know why I didn't respond, all my hormone levels were normal. The fertility doc said "under weight and under stress", certainly both were true. We were told that the reason for doing the IVF was related to my age rather than the TKI treatment. It was not known how long it would take to get the leukemia levels low enough that we could start trying for a pregnancy and by that time I could be over 40. In that case it would be good to have some younger embryos on ice. Essentially they were saying that if I was younger they wouldn't have recommended the IVF. My understanding is that when I get to and maintain MMR or even better PCRU I will go off gleevec for a washout period (I've heard 10 wks being mentioned) and then try to conceive. It is not yet clear if that will be naturally or via IVF (think we know which one hubby would prefer ). We are kinda squashed between wanting time to get as deep a response as possible and not having time because of my age. Fortunately for us my 3 month PCR tests showed a fast response with 600mg of Gleevec. We get my 6 month results tmr so figures and toes crossed here. Maybe after tmr we'll know more about when and/or if we get to try for a pregnancy. Guess I'll let you know.

Josie


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017


#5 jjg

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Posted 07 September 2011 - 04:35 AM

Hi Kara,

I just realized I rattled on a bit but didn't give you much direction. So....if your CML is stable and you have the time (& unfortunately also the money/insurance) to do IVF then go for it. It certainly has the potential to give you piece of mind in the shorter term and hopefully a family in the longer term. However, be prepared that it might not work as well as you would like. I had extra stresses that I really hope you do not have but even so your body is stressed and may not want to be fertile. The fact that I didn't respond well is now something that we worry about but we don't regret trying.

Hopefully by the time you are my age much will have changed in CML land and pregnancy will be much easier.

Best wishes for what ever you decide and also with the start of your treatment.

Josie


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017


#6 Pin

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Posted 07 September 2011 - 05:06 AM

Kara, I would have liked to have done this pre-G but I didn't have the time (I'm 29). I think at this stage, I will just have to wait until I get a better idea of how my treatment is going and then think about my options later down the track. It's frustrating, especially if you were planning to have children soon.

Josie, I have everything crossed for your 6 month results being excellent


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#7 PhilB

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Posted 07 September 2011 - 07:34 AM

The one thing I would add to what's already been said, is to remember that you are in a very different position to the typical cancer patient who has their eggs preserved before starting treatment because of concerns around the chemo or radiation therapy causing genetic damage to their eggs or leaving them infertile.   With TKIs there is nothing to suggest any risk of your eggs being damaged, and any evidence pointing to reduced fertility is marginal at best.  Given your age your eggs are almost certainly sitting in a pretty safe place right where they are, but it's up to you.

Best of luck in whatever you chose to do.

Phil

Actually I will add one more thing - as a guy who feels the cold a LOT more since I've been on Glivec, my first thought on reading the title of this thread was something quite different!



#8 Happycat

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Posted 07 September 2011 - 08:12 PM

Kara,

Best wishes to you on this.  I did IVF about a decade before getting dx'd with CML.  I will say this - if you freeze your eggs or decide to freeze embryos, go with a very reputable fertility center.  The embryology lab really makes a huge difference in the results.  (They have proprietary secret "broths" the embryos stew in to develop - the labs are very competitive about it.)

To find a good fertility center, check the CDC website. http://www.cdc.gov/art/ARTReports.htm  Just go to the reports and enter your state, then select a center near you.  I recommend bigger centers that treat lots of patients.  The more practice they have, generally the better they are.  Then look for acceptable success rates.  (Perfection not needed here.  You actually want a center to take tough cases, because they learn a lot more from those.)  If you freeze eggs or embryos, you want to ideally do it at the same center, since arranging transport without accidental thawing is a hassle with risks and costs associated.

I do, however, believe Phil is correct in that your eggs should not sustain any heritable DNA damage from Gleevec.  The problem with Gleevec and pregnancy is the risk of the drug crossing the placenta and harming the developing fetus.  However, neither Phil or I are specialists, so that's a question you should definitely ask your onc, ob/gyn and/or a fertility specialist.

HTH,

Traci



#9 jjg

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Posted 08 September 2011 - 05:05 AM

Thanks pin. Well the results are in and we are very happy with a 3.8 log reduction @ 6 months (2.2 @ 3 months). So we are still in with a chance for a baby before I'm too old n crusty. The plan being to hope for > 5 log and hold that for a few months. If I was younger we would want to hold that for yeas rather than months but I'm not. I hope my fast results don't make you feel anxious about your solid 3 month results


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017


#10 Pin

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Posted 08 September 2011 - 06:25 AM

That is really wonderful news, congratulations :) I hope it keeps on going right on down!  I do wish I was responding that well, but it is hard not to be anxious no matter what results I get!


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14





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