8 replies to this topic

[jmoorhou]

Thought I saw a post about severe itching of scalp on Gleevec.  I had this too and tried Tea Tree Shampoo and it solved it.

 

The shampoo is at Ulta, and beauty stores.

 

Hope this helps.

[Harper3994]

Will go out today and get it! I am on Tasigna and have the same issue. It is terrible. Hope it works for me too.

[Judithb]

I will try it also, although I tried T Tree Oil and it just seemed to aggravate it.  this is really bad and has been for 6 weeks so I am game to try anything.

[sunshineC]

I will try it also, although I tried T Tree Oil and it just seemed to aggravate it.  this is really bad and has been for 6 weeks so I am game to try anything.

Hi Judithb,

I believe I saw that you are on Tasigna, is that correct?  (can't depend on my brain/memory for too much of anything these days!)  I am suppose to start it in the next day or two.  Do you remember when it first started bothering you?

[Judithb]

HI, SunshineC  and welcome to the wonderful world of Tasigna.    I first noticed an itchy head about a week after starting the Tasigna.  I take 600 mg.  I did not associate it with the meds at first but then it developed into a real problem.  It felt like a colony of fire ants had made a nest in my head.  Pretty gruesome.  I tried just about every dermatological remedy but nothing worked and everything seemed to make it worse.  The best thing I tried was just to rub an alcohol free, oil free moisturizer around my hairline at night.

 

My onco has been very attentive.  She now has me on an antihistamine, gabopentin and I did 2 rounds of Prednisone short pack, you know starting with 6  5 mg tablets and reducing everyday.  I really do feel that it is better but it took 6 weeks to settle down.  I'm still not real happy but I think I can live with it if I have to, and I have to, don't I?  

 

I think everyone is different and has different experiences so I truly hope, 1.  You do not get this side effect (my onco says only 30% do), and 2.  if you do it is not too bad and goes away fast.

 

my best,

[sunshineC]

Thanks Judithb.  I start on 800mg tomorrow (going to hospital for before and after taking first pill ECGs).  So I'm guessin IF I do get that side effect from what you describe, my scalp should be literally giving off steam!!!  LOL!  *Please note: this will probably be the last time I will be able to joke about this side effect if I do indeed get it.*  I have been writing down all 'helps' I can find ahead of time, just in case.  So... if there is anything else you can think of to go along with my pressure-cooker scalp to give me a heads up/just in case step up, would certainly be appreciated. 

Thanks to all who share!! 

[story]

Was on Tas for four and a half years, the chicken skin and scalp itch never really go away but you do get used to it... The first three months were the worst. All I needed to feel better was a visit to oncology, I always felt a little guilty for having it so easy compared to the others there.

[Judithb]

Tks, Story.  Hope I will get used to it.  Have 6 more weeks until 3 months on Tasigna, but right you are about being comparatively well off.  My niece, who is a health care  professional told me, if you have to have cancer, this is the one to get.

 

Sometimes it's really hard to cultivate a grateful attitude.  Does anyone find it worse in late pm and at night?  Most of my SEs are.

[kat73]

I think things bother us more whenever we have our natural "down" time.  For me, that's the AM.  That's when I'm the most afraid, the most anxious and depressed.  It's when I feel the least "well" and the most "sick."  Everything seems completely insurmountable.  All my body parts are wrong and distressed and sending me surreal messages.  I feel older than Methusaleh, I don't dare look in the mirror, everything is super weak and crinky and I'm even dizzy.  My ears are ringing and I can't hear.  My head is a bowling ball filled with concrete. I've never been a morning person (BIG time), but this - this is something rather outsized.  I stick to my routine, I cling to my coffee and 2 papers, I "don't think" (!) and I repeat my mantra:  I will feel better in a little while.  At night I'm pretty happy and feel physically normal - cracking the jokes, happily reading, fall asleep like a woodchuck, clunk.  It's true, though, that pretty much after 3 in the afternoon I'm done, energy-wise.  But that's the only SE that seems worse.

 

I really think your fire ants are going to move along, like the little dogies they are.  Although you have been battling for what feels like eternity, it has only been about 6 weeks, right?  I think this is going to end.  You will not have to get used to it.  I just have a feeling.