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!
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!
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
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.
Hi Phil, and everyone else who replied to my question. Firstly thank you as this is the first time I have used this site and it is nice to hear from people going through the same things as me. I am now awaiting my doctor to look into this and the decision maybe to change to Dasatinib in the future. As far as taking the pill I actually have never stopped taking it so its all a bit of a mystery! Thank you again for your time.
I wish you all the best for the future
Jaime x
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
Hi All
I havent written anything for sometime but have been silently following all the discussions and it is a great comfort to share all our experiences,I do appreciate any response.
Just an update I still have no periods and my onc has been looking into this for some time but as yet has any information that backs the theory that Gleevec is the cause. He has actually suggested that I take a break from the gleevec to see if they return. This really scares me. I have been on Gleevec for the best part of 2 years and have responded extremely well. I just don't want to tempt fate. Has anyone been faced with a similar situation? It seems to me like he just wants to prove a point about the cause of my ammenoria (not sure of the spelling). If i stop taking the G will my WBC shoot straight back up? and if my periods do return and I re start G will i respond as well a second time round? Im actually thinking I'm best not discovering why I have no periods and just enjoying the fact I dont! I just seem to have loads of questions whizzing round my head.....I hope I make sense.
J x
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://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
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
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.
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! ![]()
Thanks Trey and everyone for your responses its nice to share with people who know what I am on about! I have been back to the hospital today and all my bloods indicate my Ovaries are functioning just without periods but my oestrogen levels are on the low end of the scale so they are going to monitor that, going to have a bone density test to give me a base line to work on. And so until I decide whether or not I am going to have another child I am going to stay on the G and contraceptive pill, and hope that if that time comes everything will work ok again. I am very lucky I have my 3 yr old son. And Tedsey I wasn't nursing at the time of dx just my periods stopped as I started the G I suppose I am lucky to have that rather than the other way that must be so annoying!
best wishes to all
J x