19 replies to this topic

[Frogiegirl]

So everyday I notice more and more hair thinning! I was just wondering will it stop??? I've been on Tasigna 600 mg for about 4.5 months now and the hair loss has not slowed down. I've been thinking about shaving my head and just finding cute head wraps but that may be too extreme.?? I would probably cry.......ALOT I'm a girl, we tend to be connected to our hair. I always thought it symbolized health and beauty....now I just wish we were all born bald and stayed that way! NO ONE deserves to feel this way. I'm not the first and I'm sure I wont be the last Thanks for any advice

[mariebow]

Sorry for the thinning of your, I think normally Tasigna does not mess with the hair, but I do not know if that is the case with every person, mine has been thinning up at the crown  of my hair, which I think is inherited because two of my aunties lost their hair also, but of late it is really thin.  Hope you find help, there are beautiful scarves, nice wigs, and there is implanting hair, which I would consider for me if it does not costs a lot and hurt a lot.

[Ray99]

I have been on Tasigna 600mg for almost two years.  And my hair have been thinning noticeably on the top.  If I remember correctly, after the first year, it slowed down somewhat,  But thinning continues. My doctor told me that it is a very common side effect for Tasigna user.

[Frogiegirl]

Does anyone think this side affect is reason to switch from tasigna to something else?

[Trey]

It is a reasonable reason.  These drugs are tools, not best friends.  Find one that works well overall.  You could always return to Tasigna later if you needed to.

[mariebow]

Really, wow

[KerriD]

I take Tasigna and I had thinning hair the first year. I had longer hair at the time and went to a shorter bob haircut,  Now in year 3 my hair is almost back to normal and the bonus is I never have to shave my legs.

[Frogiegirl]

Hi KerriD, You just made me cry I am hoping there is hope because I am trying not to be ungrateful for the TKI's but at this stage in my life this CML teases me in a way. I wanted another child and that appears to be a problem, I'm in the prime of my life and should be looking my best and instead that has been stolen from me. I am grateful to be alive to see my two boys I just wish I had a better self esteem and didn't feel like I was just existing. if any of that makes sense also I have noticed I don't shave my legs nearly as much either. was there any vitamin or anything you did to help?

[KerriD]

I took Biotin and then there was an expensive shampoo I used... I cant remember the name ( another fun part of CML Brain Fog) I will look when I get home tonight...I still have some but saving it "just in case".   The Tasigna works very well for me,  the CML was undectable in my blood within 6 months of diagnoses.  I am already down to 2 blood draws a year.  

There is hope.  I always  say for me... the stress of having CML is worst side effect.  Keeping my job so I can keep my insurance... waiting on results...all the other things it brought on  I now have high cholestrol, early menopause....actually alot of menstrual related issues since the Tasigna.

   BUT  I also have a different outlook on life.  I am GRATEFUL for the drugs that extend our lives and more aware of the beauty in the world.  I have 2 boys as well and I am a single mom.  My boys look out for me, tell me to go lay down when they see I am tired and understand that I need quiet for a bit and then Im ready to make dinner.  I hope that they are getting the lesson that no matter what life hands you....you have a choice on how you deal with it. 

[Ray99]

Great to hear that.  I am going into my year 3 and hopefully hair would grow back just like your did.

Thank you for sharing.

[Frogiegirl]

I love that outlook! can I just say without grossing out the boys, I too have had menstrual issues. I thought I was losing to much the first one while I was on tasigna I was so scared! ok enough said. my boys are pretty good as well. my oldest anyway. my four yr old not so much! yes please look what kind of shampoo u were using I will try the biotin as well. did you ever have to cover your head during those times?

[tazdad08]

KerriD,

     your outlook on life will be an asset to your kids. I too have the same outlook. It has brought my family closer together. Good luck to EVERYONE on this blog.

[tazdad08]

I wonder if "mane and tail" shampoo will help? It is for horses, but I have heard lots of people using to make their hair grow. Just a thought...

[jmoorhou]

Hair loss is not a risk according to many sources I have read with Gleevec

[jmoorhou]

You have long hair if you google Godiva's wigs actually go to youtube, there is a shop that cuts your own hair and makes a wig out of it.  Get into wigs.  The owner at Godiva will convince you.  I know they seem a pain, but if you go to youtube there are woman that wear wigs all the time.  I just bought a synthetic and human hair one for $500, I went to show a friend, and she said where is it?  She didn't know I had it on.  Hope this helps I'm about to start Gleevec and am really scared about thinning hair.  You are not alone....feeling this way...

[jmoorhou]

Not really.  There are some pretty heavy side effects associated with gleevec.

[KerriD]

The name of the shampoo is Nioxin.  It was pricey at Beauty Brands but then I actually found it at Marshalls for much less.  I hope it helps.  I think the main helper is just time..... Your body getting used to the drug.  I does get better! I promise ;-)

[Hokieman]

I also had the same effect of thinning hair with Tasigna. Fortunately, this is the only side-effect so far. Someone mentioned "Biontin" to me to improve my hair loss. Has anyone tried this?

[0vercast]

Predicting the side-effects that an individual experiences from cancer treatments is all but impossible.

Some people lose hair from Gleevec; on the contrary, some people can do 50 cycles of radiation without losing a hair.

[0vercast]

While I understand your frustration, I would say that it is not reasonable to switch if that's your primary side-effect from Tasigna. At least not before giving it a year or two to see how your body responds and adjusts. Compared to the other side-effects that people experience from the various TKIs, hair loss is among the more minor ones, in my opinion. It could be a whole lot worse. Chronic diarrhea, bone aches, or life-changing fatigue, for example. I am a male though, so I have a different perspective on the matter of hair loss.

I experienced some hair issues from both Gleevec and Sprycel. On Gleevec, my hair was bone dry and grew very slowly, and on Sprycel, it fell out by the handful for the first couple months. It has since slowed, but it's not like it used to be.