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Been on gleevec for 7 years and my wife is now pregnant.


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#1 ruineto

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Posted 22 June 2011 - 11:51 AM

Hello there

I just found out this comunnity, but i've been diagnosed with CML 7 years ago. I've been on gleevec since then. I have the whole list of common side effects of gleevec but i learned to live with them (i have a severe case of gleevec "rash" and didnt find anything that can solve it).


I am from Brazil, i am a physician here (emergency medicine is my area), although i am not an expert in CML because quite frankly i try to avoid researching too deep because that gets me depressed.

However my wife is now pregnant and that made me a bit scared about the babys health.

I looked up some articles in PubMed but theres very few studies and most of them are about Women who is taking gleevec.

I wonder if anyone here is in the same situation and if their baby were born healthy... also i am considering storing my baby umbilical cord blood (might save him from future leukemia).



#2 CallMeLucky

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Posted 22 June 2011 - 12:36 PM

Welcome Rui.  I don't have first hand experience with this, but I can tell you that I have read a few cases of men who have fathered "Gleevec babies" and all indications appear to be that Gleevec has no impact on the baby.

You can refer to this thread for some more info.

http://community.lls...age/63654#63654

Congratulations on the pregnancy and on achieving 7 years on Gleevec.  Children are a true blessing in life, enjoy them with all your heart.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#3 Taylor

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Posted 22 June 2011 - 12:40 PM

Bom dia!  I think everything should be okay for your baby.  As with what Lucky said, it seems to be okay to father children when on TKIs.  Congratulations and enjoy the menininho/a!



#4 valiantchong

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Posted 22 June 2011 - 12:43 PM

Hi,

There is no official study on male taking Gleevec affecting the baby, however doc do not encourage patient to have baby under Gleevec. There are cases of healthy babies are born, example Erin Zammett Ruddy, a wellknown journalist experience, you can browse her life story in the internet.

But there are some study on male spermatozoa, findings states that there higher % of abnormality found than comparing to male without Gleevec, however there is no real study done on the statistic of the male patient of abnormal child.

Do talk to your oncologist.

All the best to you...Hope this help.



#5 HPL

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Posted 22 June 2011 - 12:53 PM

Hi,

Congratulations on the baby. I have a friend who had a perfectly adorable and healthy gleevec baby. I believe Dr. Drucker has gone as record as saying that there is no concern with Gleevec babies by men. Women of course is a different issue. I have had my own doctors approval to have a Sprycel baby, and I was just at my doctor last week and the nurse told me that there have been perfectly healthy Sprycel babies as well. We are expecting in August, and have every possible test done, including chromosonal testing, and nothing has showed up. As far as banking the cord blood, we did the same with our #2 kid, but there is no evidence of CML being passed down to children.

I think there is little concern about Gleevec babies by men, there are plenty of examples of healthy kids out there.

Best wishes,

Hans

Zavie's club#1303.



#6 SunNsand

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Posted 22 June 2011 - 01:09 PM

Congrats and I think saving the cord is a great idea! It's great to read CML is not stopping us from living and enjoying new babies!



#7 Happycat

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Posted 22 June 2011 - 03:30 PM

Congrats to you and your wife on the baby!  I can't weigh in on the safety aspects, but just wanted to say congrats and welcome!

Traci



#8 cousineg

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Posted 23 June 2011 - 07:53 AM

May be some information in this link http://www.cmleukemia.com/cml-and-pregnancy.html

Successful pregnancy involving a man with chronic myeloid leukemia on dasatinib
January 3, 2011, Glivec Research Today



#9 ruineto

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Posted 17 March 2012 - 07:00 AM

Hi guys its been a while.

I came back to this topic to report that my daughter was born January 18th and she is PERFECT.

She's two months old and very healthy baby!!! I hope this can encourage others that are in the same situation and will go thru the same doubts i had.



#10 tiouki

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Posted 17 March 2012 - 10:50 AM

That is an amazing news, enjoy!!!
Pierre



#11 Tedsey

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Posted 17 March 2012 - 12:53 PM

Congratulations!  May you have a long and happy life with your wife and children!

All the best,

Tedsey



#12 pamsouth

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Posted 17 March 2012 - 12:59 PM

Congratulations on (TRULEY) God's little miracle your baby girl!!

PamSouth


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#13 janne

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Posted 17 March 2012 - 02:32 PM

That is the best news ! May you have many, many, many blessings for years to come with your family ! Children are truly a gift and I am sure you are realizing that as well ! Congratulations !!!! Janne


Dx'd: 8/2008. Started Gleevec 400 mg 11/08. 

Drug break 2011.

Started Tasigna 4/11 450 mg.

Reduction to 300 mg Tasigna 1/2012.

PCRU 9/2012.

12/2012 Detectable.

PCRU 4/2013 through 3/2015. (Reduced to 150 mg 7/2014)

12/2015  ? slightly detectable at probably less than 0.01% per Mayo Clinic.

4/2016 PCRU. Still at 150 mg Tasigna.

 

CESSATION: stopped treatment 7/20/2017. 

9/6/2017:  barely detectable at 0.01%. 

12/11/2017: PCR at 0.09% (did not do the monthly PCR testing.) 

12/18/2017: Inevitable call from Onc. Started back on Tasigna at 150 mg. (Considering Sprycel low dose.) 


#14 Dina36

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Posted 17 March 2012 - 07:17 PM

Congratulations, what a great news.

Just love reading great news, it makes me feel really good!



#15 Guest_billronm_*

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Posted 17 March 2012 - 10:14 PM

Dear Ruineto,

   Congratulations, I'm so happy for both of you. Like Dina says great news makes us feel really good. Everytime I see a newborn baby,cml,or not, I always say I believe in miracles.  Sincerely Billie



#16 hannibellemo

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Posted 17 March 2012 - 11:09 PM

Congratulations to all three of you, Ruineto! Truly one of life's perfect treasures.

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#17 Susan61

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Posted 17 March 2012 - 11:17 PM

Congratulations on your new little baby girl.  May God Bless all of you with many more years ahead.

Gleevec was a miracle for many of us when it came along, and your precious little baby is also a miracle.

Life can be good even with CML.

Susan






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