23 replies to this topic

[newcmlgirl]

I have been on 800 mg of Tasigna for about five days and this morning i woke up at 3:30 and felt like my scalp was on fire. I have add a lot of itching on my scalp lately, but this was a whole new thing.  I've been taking aspirin. Has anyone had anything like this?  If so, what did you do?

[MJB]

Hello I hope your side effects are tolerable today. I wanted to let you know that I have had the itchy scalp but not the on fire thing.  The side effects for me were the worst on days/ nights 6 through day 12 and then they calmed down. It was strange how they would hit at night rather than during the day. Call your doctor for pain medication. I do not think you should be taking aspirin but you will have to check on that. Hang in there! In a few days you will feel much better!

MJB

[nadee546]

Hi,

I have been on Tasigna for about one month --200mg. twice a day. My scalp doesn't feel like it's on fire--but it itches all the time. I am constantly scratching _I have tried Benadryl but it doesn't help. My scalp also hurts sometimes -it sounds so silly but it hurts just to touch it !!!!I don't think I have ever seen anyone mentioning a sore scalp before.  I mentioned it to my doc but he just shrugged like it was no big deal. Our bodies change so much while on this medication-sometimes the side effects go away and sometimes they stay. And everyone is so different with how their bodies react to these drugs. I do hope this side effect improves for you-it has to be horrible to feel like your scalp is on fire. If it doesn't improve you can always call your doctor to see if he has any suggestions.   Nadee

[newcmlgirl]

thank you so much MJB. I took aspirin and that helped. My doctor finally called

back and recommended claritin.  so happy to hear it's likely a temporary thing.

[newcmlgirl]

so nadee546, you're still itching after a month?  I hate that!  I hope it gets

better.   My doctor prescribed claritin, which seems to counter most side

effects (like when i took neupogen shots with Gleevec).

[Trey]

Our TKI drugs cause itching, also called pruritus.  Sometimes it feels like it is "en fuego" (on fire).  This is because the TKI drugs work by inhibiting rapidly growing cells, which defines leukemia and cancer in general.  As an unintended side effect, TKI drugs also inhibit other rapidly growing cells in the body.  The fastest growing cells (except for blood cells) are skin and hair folicles.  As we have noted many times, we have skin rashes and scalp rashes, and they itch.  The TKI is inhibiting the normal function of some skin and hair follicle cells, and they don't like it.  They send out signals to the nerves saying "I'm not happy, so to get your attention, I want to be massaged".  So the skin and hair follicles are expressing their unhappiness in the form of itch signals.  TKI drugs inhibit the BCR-ABL, but the itch is caused by inhibiting the c-Kit and/or PDGF, which we do not need to have inhibited, but they look a lot like the BCR-ABL to TKI drugs.

For me, there are two side effects that have been my constant "friends" for these past 5 years.  Namely, they are muscle cramps and scalp itching.  These two do not respond to anything I do, at least not for very long.  The muscle cramps and I have reached a general agreement that as long as I do not bend in weird directions, they will behave to some degree.  The scalp itch and I are not in agreement on any part of any truce or anything.  It is an enemy of the people and I am therefore its enemy, because I am people.  The best I can do is rub lightly only with the palm (never fingernails) a few times each waking hour.  Some people use antihistimines.  I have also used a prescription skin desensitizer foam, but I got tired of using it.  Besides, it has "drug interactions" with my Brylcreem, and I cannot live without my Brylcreem for the following reasons:

http://www.youtube.com/watch?v=jRcRIbExrfg

For the ladies who cannot use Brylcreem, you might want to try this to stop the itch:

http://www.youtube.com/watch?v=9Q1gksqqhLU&feature=related

Anyway, scalp itch and I are declared enemies.

[newcmlgirl]

wow, thanks Trey.  I see that you've had CML since 2005.  So you have been on

Tasigna for that long? I was so hoping the ictchiness/fire was temporary.  I

will ask my doctor for more help on that. What was the prescription stuff you

were taking.  (I won't have issues with Brylcreem....were you joking?  are they

still making that? loved the youtube.)

I find that extra potassium and magnesium helps with leg cramps. I had more

muscle problems with Gleevec. A few times, my muscles would lock into a weird

and painful place and it was hard to get them unlocked.

[newcmlgirl]

p.s. Trey, Can't they lower your dosage after five years?

[SunNsand]

Sorry to stray from the topic ... but good Lord, I still can't believe my eyes after watching the link Trey posted to the ladies video. It's no wonder we have cancer. Our country developed a deadly affection for all things chemical after WWII.

SunNsand

[newcmlgirl]

Trey,

    Thanks so much for this..it's really helped me understand what's going on. 

Do you have medical training or have you just done a lot of research?  If you

have been on Tasigna for five years, were you in a trial? 

    Just had another doctor's appt this morning and my cell counts were down so

i'm going off for one week while we try to boost them back up with a shot.

    I hope I didn't upset you about the brylcreem....was just teasing...I just

hadn't thought about it in years...

    Please keep talking to me.  thanks, newcmlgirl.

[Trey]

No issues to be concerned with.  Yes, just kidding about Brylcreem -- never used it.  But if you had grown up in the 1950s you would be able to sing the Brylcreem jingle and recite the Crest toothpaste label from memory.

"Crest has been shown to be an effective decay preventative  dentifrice that can be of significant value when used in a  conscientiously applied program of oral hygiene and regular professional  care."

I have been on Gleevec for 5 years, never Tasigna or Sprycel.  I just responded very well to Gleevec.

I have no medical training.  Just a fellow patient and an incurable CML GEEK.

[newcmlgirl]

Trey,

     You have scalp itchiness with Gleevec?  How about edema and puffiness?  I

had puffiness and muscle cramps on Gleevec (did I already tell you this?) and

magnesium and potassium really helped.

If I can't resolve the scalp issues with Tasigna -- and i was feeling completely

tortured by late last week -- I'm going back to Gleevec. My white cell counts

were down to 900 on Friday so I have a week off Tasigna (soooo happy about that)

and then we'll try a lower dose..... newcmlgirl

 

[Trey]

Yes, scalp itchiness with Gleevec.  It did not seem to start right away, but came on after quite a while (maybe after a year or so -- can't recall).  After 5 years it is one of the side effects that linger.  So I do not know if changing back to Gleevec would help with the scalp itch.

To keep it under control it is very important to not damage the skin and cause healing itch.  So never scratch with the fingernails, only open palm or finger tips.  The combo of TKI itch and healing itch is very bad news once it gets started.

[newcmlgirl]

wow, okay, good to know...so Gleevec may not be any better.....also, didn't

really get that i shouldn't use fingernails, so that helps, too, as I get ready

to start the Tasigna again....thanks Trey..

p.s. Someone said in one discussion that Pfizer is working on a Tasigna-like

drug that doesn't attack new hair cells

[Trey]

Yes, that is the posting about Bosutinib:

http://community.lls.org/thread/7502?tstart=0

[newcmlgirl]

Trey, are you on 800 mgs of Gleevec?

[dian]

I have been on 600 mg gleevec since 1999 and have the sore scalp and itching you are talking about it is so severe that  I find it hard to sleep at night I sleep sitting up on one of those bed chairs with a pillow on top  I have a zip loc bag and a paper towel soaked in water frozen that I use as and Ice pack  I then fall asleep and about 1:00 am I am able to get rid of the chair and the Ice pack and sleep normaly the Ice pack helps alot.  I have tried every ointment potion rub and shampoo that any one could and so far have not found the answer.  I don't seem to itch or hurt nearly as bad during the day just at night..  I used scalpicin for a while and my hair died it was dry and brittle so I started using a light oil on my scalp (doo  gro)  and it helps the condition of my hair. I was going to try the tisigna but it seem that is a problem also.  While it was sort of good to know that this is a thing the meds cause helps my mind anyway the doctors just look at you like a little itching big deal even the doctors on the clinical trial.  So with that God bless you all and I hope we find a answer.  dian

[Badblood]

I have also had the same side affects since starting Tasigna about 6 months ago and can't stop itching. I have noticed alot more hair in the shower drain and on the hair brush lately too. Is it just middle age or do alot of people lose thier hair on Tasigna?

[DanCml2010]

try allergy meds, i take claritin and atarax. they have helped me. also, if your skin is dry as well- try jojoba oil. the combination has helped me. I was on gleevec, now i am on tasigna and thats what gets me through it.

[plkuhl]

I just switched from Gleevec to Tasigna. My scalp is so tender.  Thought I would hit this site to see if anybody else had that happen to them or if I was just delusional.  Sure enough, it's the Tasigna!. Ouch!