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11 Replies Last post: Feb 25, 2010 3:26 PM by jar  
jar   6 posts since
Sep 15, 2009
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Sep 15, 2009 2:01 PM

Any Young Females with CML

Hi Just thought I would ask as I dont seem to be able to find much info on this.....I am 32 and was diagnosed with CML last june I am on 400g of Imatinib (gleevec) I have responded very well to this and achieved cytogenic remission at 6 months however the side effects are annoying....still have sickness and aching bones and suffer from pins and needles but also since the day of taking gleevec I have never had a period and my doctor doesn't seem to think this is common with this drug but there seems to be no other reason for this I wondered if there was anyone else in this situation? Don't get me wrong it is nice to not have periods I just don't want the choice of having any more children (I am lucky enough to have a beautiful son) to be taken away from me!

PhilB   236 posts since
Apr 7, 2009
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1. Sep 15, 2009 4:47 PM in response to: jar
Re: Any Young Females with CML

Hi Jar.  I'm not that young (43) not female (last time I checked) but do have CML.  Irregular menstruation is listed as an 'uncommon' side effect of Glivec (along with almost anything else you can think of).  Don't know if this applies in your case, but a more common side effect is weight loss (although weight gain is even more common)- which in turn could lead to irregular menstruation.  The good news is that at 32 time is on your side and more women with CML are having healthy children all the time.  You could try other drugs (irregular menstruation has also been reported on Sprycel, but there is very little correlation generally between side effects on the different drugs for the same person), you could take an extended break from medication if you have a deep and long-lasting response, or the periods may just better all by themselves as your body adjusts to the drugs / your stress levels decrease.  There is even every chance of them finding a complete cure for CML while you're young enough to celebrate in ways that might lead to more children!

MomMom   192 posts since
Apr 3, 2009
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2. Sep 15, 2009 5:03 PM in response to: PhilB
Re: Any Young Females with CML

Jar, there are young women here who have CML and most likely have the same concerns that you do.  I know that I would have had them at your stage of life if I had been diagnosed then.

 

Phil, I don't think myself or any of the women on this site could have responded better to Jar's questions.  You are a compassionate and understanding fellow.

 

MomMom

Michelle   14 posts since
Jun 15, 2009
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3. Sep 15, 2009 9:34 PM in response to: jar
Re: Any Young Females with CML

Hi,

 

I'm 28 years old, diagnosed in May 09. I haven't had any children yet but I am encouraged each time I hear about a woman having a healthy baby with CML. I can only hope and pray it will happen for me, when I'm ready.  I have been on birth control for several years and continued after I was diagnosed so I have regular monthly periods. My oncologist encouraged me to stay on the birth control because of the risk (though it is unknown) of birth defects if you become pregnant while on Gleevec so I have chosen to continue on with it. I'm not sure if it's a bad thing not to have a period but it might be a good idea to go on the pill just as a precaution and then you would obvously get your period. I'm not sure if this helps. Wishing you the best.

tinac21   36 posts since
Jun 14, 2009
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5. Oct 2, 2009 9:14 AM in response to: jar
Re: Any Young Females with CML

Hello Jar,

I'm Tina, 22yrs old from Tampa, Florida. I have been a member of the "club" since 3-1-04. Since then I have had a healthy (unplanned) son. who is now 3. We are considering having another child but arent sure if we want to risk it again. I highly recommend talking to your doctor about all the options of having another child. My doctor isnt fond of the idea of more children, although I would like another one I am not sure how to discuss it with her as I know how she feels about me having to come off Sprycel and I am immune to Gleevec and can no longer take it as it doesnt help me. Everyone is different and you doctor will probably have the best advice for you.

 

Tina

Trey   603 posts since
Mar 27, 2009
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7. Feb 23, 2010 6:18 PM in response to: jar
Re: Any Young Females with CML

Gleevec can impact some functions that could also affect menstruation.  It can sometimes cause general hormonal imbalances in some people, including the pituitary, which is critical to menstruation.  It can reduce thyroid funtion, which can also affect menstruation.  Generally, this is considered an uncommon side effect.

 

http://www.mayoclinic.com/health/amenorrhea/DS00581/DSECTION=causes

 

http://www.biomedsearch.com/nih/there-any-relationship-between-imatinib/20089016.html

 

http://www.modernmedicine.com/modernmedicine/Oncology/Doctors-Should-Consider-Ovarian-Health-in-Imatinib/ArticleNewsFeed/Article/detail/500632

 

http://patientsville.com/symptoms/amenorrhoea.htm

Imatinib Side Effects Report #5669324-4
IMATINIB problem was reported by a Health Professional from GREECE on Mar 05, 2008. Female patient, 28 years of age, was diagnosed with chronic myeloid leukaemia and was treated with IMATINIB. After drug was administered, patient experienced the following problems/side effects: amenorrhoea, blood follicle stimulating hormone increased, muscle spasms, oligomenorrhoea, ovarian failure, skin discolouration, ultrasound ovary abnormal, . IMATINIB dosage: 400 MG/D.   Patient recovered.

 

http://content.nejm.org/cgi/content/extract/358/24/2648

 

http://www.umm.edu/altmed/articles/amenorrhea-000006.htm

hannibellemo   205 posts since
Apr 3, 2009
Currently Being Moderated
8. Feb 23, 2010 6:35 PM in response to: jar
Re: Any Young Females with CML

Hi, jar,

 

I'm not sure I'd stop taking G just to see if my periods resumed but to address your concerns about swiftly elevating counts. I did have to go off G for 7 weeks last fall when my liver decided it wasn't thrilled with G. My WBCs went up to mid-range normal (first time I saw those numbers in awhile) and stayed there. I felt great and I really didn't have any major problems before the liver with G. I went off after 7 months on G; I had reached a MCyR (FISH at 4% down from 95%). I've been on Sprycel since Oct. 09 and not really thrilled with the way I feel.

 

Everyone is different but I'm not sure there is any reason to assume your periods won't resume if you decide to stop G and try for another child.

 

Good luck!

 

Pat

Tedsey   80 posts since
Jan 13, 2010
Currently Being Moderated
9. Feb 23, 2010 6:51 PM in response to: Trey
Re: Any Young Females with CML

Hello!  I am somewhat young (pushing middle age).  I am a bit older than you, but I am still in childbearing years.  I seem to have the exact opposite problem.  I am getting my period regularly (I never did in my life) and it is very, very heavy (which sucks because it brings down all my red blood and platelet counts).  I have read too that Gleevec is accused of interfering with female hormones.  It may put some women into an early menopause (however, you are probably too young for that).  Since my husband and I decided to try for another child right before I was diagnosed, it would be nice to not have to now worry about getting pregnant.  I totally understand what you mean about trying to avoid getting pregnant and not wanting to have to terminate the pregnancy.  Anyway, don't let that scare you.  If you can reach PCRU (no signs of cancer) and stay that way for 2 years, the onc I see said a person could go off Gleevec and try to get pregnant.  There are things that can be done for the young who have to deal with this monster!  I will likely be too old in 2 years to have another baby (if I am so lucky to reach PCRU--total response to drug).  You will still be a spring chicken!  That is, if you want more kids.  We now are blessed with 2, and let me tell you, it is a lot harder!  May this unexpected journey be an easy one for you.  Best of luck with everything.

Tedsey   80 posts since
Jan 13, 2010
Currently Being Moderated
10. Feb 23, 2010 6:56 PM in response to: Tedsey
Re: Any Young Females with CML

Just a quick question.  Were you nursing your son at or around the time of diagnosis?  I had to stop cold turkey with my baby (so painful).  Anyway, I didn't get a period until I stopped nursing for a month.  With my first child, it took 12 months.  It can also take up to 18.  If you don't nurse, then disregard!

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