23 replies to this topic

[Shiftless]

Is anyone on Sprycel suffering from unresolved skin issues?

I've been on a sprycel drug break for over 4 months (due to side effects) and my sprycel rashes and dry skin simply will not clear up. My doctors have no answers. I feel like I've tried everything (i.e. Rx topicals, antihistamines, etc.)
It's as if this drug has permanently altered my skin and immune response.

Is anyone else suffering from this problem?

Thanks

[Judithb]

I am so sorry for what you are going through and I think I can emphasize a bit.  I have no solutions though. I have this problem with Tasigna, on 5 weeks, incredibly medically effective but the skin problems you described are horrible.  I feel as though there is a colony of fire ants taken up residence in my scalp.

 

My onco will not take me off to see if SE clear up.  She says there are no studies on the medical effects of stopping.  Where are you being treated, if I may ask?   How long were you on Sprycel before you took a break?  I too  have tried everything but find the dermatological meds do not help, only hurt.  I do take gabopentin and steroids which seem to help a little, 

 

I wish you a better result soon.

[Shiftless]

Hi JudithB,

I was on Sprycel for 3 years before I took a break. Luckily my numbers are stable, but the side effects are horrible. The skin issues are depressing because they're clearly visible on my face. I don't tell people I'm sick, so I get lots of unwanted (unhelpful) advice on how to clear up my rash. Sometimes I just want to scream, "I have cancer you boobs! A honey-oat poultice will NOT clear up this rash. Besides, I've already tried that, and while a tasty treat, it did nothing for my skin."

I'm sorry you're having the same problems as I am. Thanks for comiserating.

I do wonder if dasatinib has created auto-immune changes.

[Judithb]

Oh, I am so sorry about it's being visible.  So far  mine is not, but, of course, I can feel it all over my body and anyone who touches my arm or face could.  So much for the old adage:  "it is better to look good than to feel good."  Wish we could do both.  I have no answer for the unsolicited advice.  Maybe you should just shock them into reality by saying what you want to.

 

I have not told many people yet (10 weeks in) but it's getting harder and harder to refuse invitations and extra activities.  I am still pretty fatigued.  I did  tell the dean of the law school where I teach as I did not want her to think I had abandoned my extra-curricular duties.  She was very understanding, but don't know how much longer I can simply teach my class and go home.  Pls let me know if you get any relief.

[Shiftless]

I understand what you mean. To be honest, I've become a bit of a recluse. It just seems easiest that way.

In my opinion, I don't think the doctors take the fatigue issue as seriously as they should. Fatigue makes a huge impact on our lives and changes the way we interact with the world. I hope you get and have the support you need, both at work and at home.

I'll let you know if I find any help for these rashes we seem to be enjoying.

[tiredblood]

I am so sorry for what you are going through and I think I can emphasize a bit.  I have no solutions though. I have this problem with Tasigna, on 5 weeks, incredibly medically effective but the skin problems you described are horrible.  I feel as though there is a colony of fire ants taken up residence in my scalp.

 

My onco will not take me off to see if SE clear up.  She says there are no studies on the medical effects of stopping.  Where are you being treated, if I may ask?   How long were you on Sprycel before you took a break?  I too  have tried everything but find the dermatological meds do not help, only hurt.  I do take gabopentin and steroids which seem to help a little, 

 

I wish you a better result soon.

My burning scalp with Tasigna finally subsided while I was on therapy.  It was one of those many side effects that I had that only occurred for a short period of time.  It felt like someone had put a hot iron on my scalp.  I've been off Tasigna for about 7 weeks and the rash is gone, but my skin is still very dry.  My hair dryness is improving, but hasn't quite returned to pre-TKI status.  Constipation is gone.  Still have some areas of missing hair that has not grown back.  No more bubbles in my urine.  Forgive me if this is TMI.

[tiredblood]

Hi JudithB,

I was on Sprycel for 3 years before I took a break. Luckily my numbers are stable, but the side effects are horrible. The skin issues are depressing because they're clearly visible on my face. I don't tell people I'm sick, so I get lots of unwanted (unhelpful) advice on how to clear up my rash. Sometimes I just want to scream, "I have cancer you boobs! A honey-oat poultice will NOT clear up this rash. Besides, I've already tried that, and while a tasty treat, it did nothing for my skin."

I'm sorry you're having the same problems as I am. Thanks for comiserating.

I do wonder if dasatinib has created auto-immune changes.

I can so identify with all the un-needed (unhelpful) advice.  Only my hem/onc or my buds on lls.org discussion board are qualified to help me with my CML/TKI associated issues.

[Terran]

Thank you Shiftless. "I have cancer you boobs! A honey-oat poultice will NOT clear up this rash." You made me laugh out loud. I'm on tasigna, with itchy scalp and chicken skin covering my body and face.

[Shiftless]

@Terran,
This KP chicken skin is the worst.

[Shiftless]

@ tiredblood,
I don't know what I'd do without the lls forum. Lots of useful insite.

[Judithb]

Guys,

 

Can I just vent.  This has been a horrible day, after a really good one yesterday.  Somehow, the nausea I experienced the first week came back with a vengenace.  I don't know whether to eat or not to eat.  Also I have bowel problems for the first time in 5 weeks on Tasigna.  I think, just think, my hair on fire may be getting minsculey better, but maybe I am just getting used to it.

 

On the other hand, these posts keep me going.  Pray tell,  Tiredblood, what is bubbles in the urine?  Just so I can recognize it when I wil inevitable get it.  Probably soon.  And no, nothing here is TMI in my opinion.  Does anyone else think they have a rash in their lady parts?  Not that I can do a visual check.

 

Just typing this made me feel better.  Now I am going to take my daily nap.  Everyone have a great evening.

[Gail's]

Can't say anything about tasigna since I take gleevec. I have noticed that the nausea comes and goes. Much, much better than at first but frustrating because it's so unpredictable.

[kat73]

Judithb - It is just SO hard.  I remember that, in my early misery, what a wanted from the onc was not another stomach nostrum Rx, but just some well-founded hope that "this will go away, right?" and also, I wanted a ball-park time frame.  Just so I could endure with some sort of end-point in mind.  I wasn't following this forum yet, and had not found Trey's blog either.  I was so alone and in the dark.  That (ex) onc was ABSOLUTELY NO HELP WHATSOEVER on side effects, which is where we all live.  When I did come to this forum, I could see that the problem of side effects often comes down to a basic mystery that you can only solve by actually living through it in order to see, and that is:  Should I stick it out to see if it will go away in weeks/months/years?  Or have I suffered enough and should I try a drug switch?  I have had that chicken skin thing, all over in patches, and on my face bigtime - I've even had peeling skin - both came in cycles that lasted several months.  I thought it was just something permanent that I was going to have to adapt to.  And then it ended.  And has never come back.  What gives?  Who knows? I guess I would say to you to try and stick it out for a few more months - make it through the winter and into the spring and then re-evaluate.  So sorry you (and everybody else, above) are having these troubles.  I am just curious, what do you teach at the law school?

[surfdaisy76]

Yes side effects are such a joy, aren't they??  I have been on Sprycel since dx almost 6 months ago.  Have had skin issues from the start and some fatigue BUT I have always felt so lucky that I have not really had the nausea that so many of you speak of...UNTIL now!!!  It has hit me full force the last two days and I get to cook Thanksgiving dinner in two days!  That should be a lot of fun!!

 

 One good thing...I will probably not overeat!!!!

 

 

BTW....any good remedies for the nausea???

[Gail's]

Tried 4 different prescriptions. Found that ginger chews and peppermint tea helped as much as the drugs without knocking me out. I'm on gleevec and splitting the dose helped a lot. Don't know if you can split sprycel. Feel better soon!

[Marnie]

Splitting Sprycel increases the likelihood of pleural effusion. It is not recommended.

[Judithb]

Kat73

 

Everything you say has proved to be true so far.  I am not very patient.  Maybe this is Gd's lesson for me now.  I teach International Trade Law after a career in that field of over 25 years.  I love my teaching and my students and hope I can continue.  I have not missed a class but sometimes the brain fog is so strong I have no idea if I am making sense.  I guess the evaluations for the semester will tell.

 

Good luck to everyone and Happy Thanksgiving.

[kat73]

Oh, those pesky student evaluations!  We should never have allowed the inmates to run the asylum . . .

[jmoorhou]

I had rashed on my rear end and I took Prednisone and it went away.  I also have a topical steroid cream that clears up any skin issues.

[jmoorhou]

I got some ginger pills at Whole Foods and it really solved the nausea, I take two as soon as I feel myself getting nauseous.