8 replies to this topic

[cmlquestions]

I am a 27 yr. old female w/ CML.  I was diagnosed in early June '10, started on Tasigna later in the month, and reached Major Molecular Remission in late November.  Around that time, I came off of the Tasigna to see if some symptoms I'd been having for a couple of months (rash, hair loss) were related to the drug.  I have been off the drug for 6 weeks & I am continuing to lose a lot of hair & the rash has not improved.  My hem/onc thinks the hair loss was probably caused by the drug, and the dermatologist said whether it was the drug or stress, it could take a while for all of the hair in the fall-out stage to actually fall out.  The only other possible cause mentioned was an iron level that is on the low side of normal.  Regarding the rash, one dermatologist thought it was a type of eczema & another thought keratosis pilaris (neither caused by the drug), but none of the steroid cremes, etc. have helped.  My hem/onc suggested switching to Sprycel, and I was set to do this until I received the shipment & read a warning that it may affect fertility.  I am not currently planning to have children in the immediate future, but I would certainly like to, Lord willing, at some point (I have heard there are options of going on interferon, etc., if one wants to get pregnant).  I understand that there is no real data in humans with Sprycel being another new drug, but I am weighing the decision of trying the Sprycel anyway, going back to Tasigna, or trying Gleevec.  A reason we initially chose Tasigna was that I have ulcerative colitis & had my colon removed several years ago, and Tasigna had the least chance of causing diarrhea.  One practical perk w/ Sprycel is that it is once daily w/ no fasting requirements vs. Tasigna being twice daily w/ two 3-hour fasting periods.

Any knowledge or experience in these areas?

[AliceJane]

My hair started falling out about a year before I was diagnosed. And not just on my head.  This stopped the year I was on Gleevec. I started back but not as much the 18 months I was on Sprycel.  Then started back big time the 2 months I have been off Sprycel.  I have only been on Tasigna a week and too soon to tell what will happen.  I have less than half the hair I had before all this started. No one notices because I had really thick head of hair to start out with.  But I can't blame it on the meds, since it was worse before I knew I had CML and has gone back to worse off the meds.

On the view they talked about female hair loss.  The pattern of my loss fit what they described as stress, and cancer patients and people with serious illness.  I thought wow, I have all of the above so which to I pick.  When I ask Drs. they blame the meds, but when I tell them it started before I have not gotten a good explanation yet.

the good news, I have not had to shave underarms in over 5 yrs. My eyelashes and eyebrows are back but thinner.

I am ??????

[janner25]

Hi!  I haven't experienced full out hair loss - just major slowing of hair growth on the tasigna.  I am typically an optimistic person - so was quite happy that I rarely have to shave and was thrilled that my last hair cut REALLY was worth the money .  I have found my hair thinner - but again - don't know if its from the hair cut (right before diagnosis in October 2010) or if it's the tasigna.  The only thing I can think is that the tasigna is causing the reduction of hair growth (I haven't confirmed this thought with the doctor - just based on some reading).

Good luck with your options!

[cometbro]

As far as Tasigna and hair loss, it seems different people have different experiences with it.  Some people have it, some people have it to some degree, and some people don't have it at all.  It seems that people that have had some hair loss grow it back to some degree.

See a previous discussion on this:

http://community.lls.org/message/78587

and from another message board, more experiences..

http://www.dailystre...signa-hair-loss

[Trey]

Although the data will continue to accumulate, from what is known now, Sprycel is no more likely to reduce fertility than Tasigna or Gleevec.

[cometbro]

Just thought you might like to see this:

http://news.yahoo.co...overed-23757868

Supposedly, just recently, the true root cause of hairloss was found. They predict the cure for hairloss now will be within the next 10 years.

[rickpister]

Re fertility, it doesn't sound like there is much satisfying information about Sprycel's effects on reproduction.  If this terrible diseases wasn't bad enough, many of us now have to be concerned about this.  What's the alternative?

Best of luck to you (and all of us).  After reading these boards, we can take solace we're in good company.

[Tedsey]

Our drugs are relatively new.  From what I can glean, there appears to be bias in society and in the medical community against cancer patients procreating.  However, I like to be so bold to think that times are changing.  Cancer will not always be seen as as death sentence.  It is proving to be inaccurate anyway.  There is a huge lack of empathy when individuals criticize women with cancer and call them selfish because they may die after bringing a child into the world.  Well, as far as I can tell, this cannot be controlled for even in so-called "healthy" people.  Many cancers, CML included, will become manageable diseases.  And if it can be kept in a low state, CML will probably be considered benign (I actually read an article by a researcher who called CML in the CP a "benign disease"; reading this, for some reason, brought me great joy).  This is my hope too.  But I don't think it is far fetched.

Being a woman still in childbearing years, I pay attention to how the TKI drugs effect fertility.  Because there is not much data out there, I have decided to play it safe and be thankful for my two children.  I was lucky and I know it.  As I was diagnosed when my youngest was a baby, and trying for another, it was very hard and emotionally wrenching to give up the dream of having another child.  Stopping breastfeeding cold-turkey was also extremely difficult (TKIs may concentrate in breastmilk) .  It was physically and emotionally painful.  Although it helped a little that my husband didn't really want any more children anyway, I still find I mourn the third child I will never have.  Nevertheless, while in the oncology ward at the hospital awaiting dx, with my breast pump in the room, separated from my babies and surrounded by elderly patients, there was a very kind doctor.  She kept on mentioning to me that people can have babies after a CML dx.  She was an enlightened one.  Again, I have two children.  But I can totally understand the fear and sadness that comes with the thought of putting one's life at risk to have a child, especially when diagnosed in your 20s or early 30s, or any age where you feel ready to bring a child into the world "like everyone else".  Anyway, there are ways of doing it as safely as possible.  Please check out the writings of Erin Zammett Ruddy. http://www.glamour.c...ife-with-cancer and http://www.parenting...n-zammett-ruddy.  She was diagnosed with CML at 23 and now has 2 beautiful and healthy children.

As for hairloss, the hair on my head has always been fine, (as in thin).  It also gets worse after having a baby.  Anyway, in all other ways I considered myself kind of hairy.  But on Sprycel, I noticed I am much less hairy.  I don't need to shave my underarms and legs as often.  I think this must be due to the drug.  And if somewhat newly diagnosed, hairloss can be a result of experiencing great stress from loss or trauma (both we experience with CML).  When I was on Gleevec, my hair started to come in normally after 3 months (I lost it in clumps due to the stress of dx after it was just coming back from having a baby).  However, after about 3 months on Sprycel, I noticed I was much less hairy all over.  Not so bad as long as it stays on my head.

Oh, breastfeeding can be an option for a short while.  Oncs usually like to get you back on the TKIs ASAP.  Right now, you have to go off them to conceive and go through a pregnancy.  Being MMR or PCRu are the best candidates, but holding CCyR for some years may also be acceptable.

I wish those who want to resume a "normal life" with CML to be able to do so.  I would love to read about this next generation and their babies!

Tedsey  

[cmlquestions]

Tedsey, Thanks so much for your reply & for the links to that woman's blogs.  What an encouragement!

I appreciate everyone's contributions to the discussion!  I opted to go back on the Tasigna a couple of days ago, so I am fighting through those initial headaches and trusting the Lord:)