5 replies to this topic

[jrsboo]

Is anyone else having skin issues with sprycel?  I am having skin peel away and then blister on my chest, there are rashes on both thighs, my face is covered with an acne like stuff and it even is on my scalp making it very hard to brush my hair, which also seems to be falling out at an alarming rate........and it is a holiday Friday into a weekend, and I can't get anyone to return my calls at the Cancer center, and my onc is out of town.

I am using a special sensitive skin soap to cleanse with, am trying to put gold bond powder on the areas that are oozy to dry them up, but don't know what to put on chest and the rash on thighs is new.............

ACK!

I am not enjoying this disease.  Not even a little bit.

Caroline

[Ludwigh]

Hello Caroline, been on Sprycel for a year now. I had plenty of skin issues which for the most part have largely cleared up. I just used Ivory soap, seemed the only thing that really worked.

I think all drugs especially those that can tackle CML will have side effects. Its just part of the struggle to staying alive.

Terry

[jrsboo]

Thanks!!!  I have been using Seba Med (found it at Costco, made by Dr. for sensitive skin).  But my Onc actually replied today, even tho it is a holiday and she is on vacation across the country.  Yay Dr. Oehler!  All the Cancer Centers are closed for the holiday, but she called in a script for prednisone for me at my local pharmacy. 

Thank you so much for responding to my question.  I was feeling pretty down this morning. 

This board is a life saver.

Caroline

[WoofWoof]

Can't help with the Sprycel but had skin problems on Gleevec & now the same with Tasigna. I've been to several dermatologist including @ Johns Hopkins hospital. Everyone agrees, yes I have a rash....duh. Most common dx. is that the meds are contributing to the cause but also it's just a by-product of my immune system. At one time it looked horrible with peeling & blisters on my face, neck, torso and legs. It is somewhat under control with lots & lots of prescription creams and taking that d*mn prednisone. At this point it's manageable but still uncomfortable. I just consider it a relatively small price to pay for coping with this disease.

[janekaye]

Hi Caroline,

I can totally sympathize with you about the skin issues.  Although I didn't have them with Gleevec for eight months, I've had them ever since starting Sprycel more than a year ago.  (However, other side effects have MUCH improved!)

I use a topical cream called Clobex which is a prescription and very expensive (not good if you don't have good insurance).  It works well on small spots, but when the rashes kind of take over your legs and arms, it's not all that helpful.  When things get really bad, I take Aveeno baths and use lots of Cetaphil cream morning and night.  I've never really gotten a handle on it, but of course the occasional dose of prednisone will help.  Unfortunately, that's not something the docs seem to recommend on an ongoing basis, which is understandable.

Mostly, I just deal with it, and after so many months, I've just chalked it up as a crummy side effect, but better than the ones I dealt with on Gleevec.  If you come up with other solutions, please share.

Take care,

- janekaye

[jrsboo]

Thank you everyone for responding!  It is very helpful somehow to know that one is not the only one with these side effects.  Although why knowing someone else is suffering just like you are makes you feel better, I don't know.

The prednisone seems to have taken the edge off the rashes, they are still here, but not as painful, I suppose in another couple of days it will be even better.  I have been on predinsone before and know what a sharp edged sword it is to take.  I was on it for months about 12 years ago for another type of vascular attack unrelated to CML.

And really the only thing that was helping prior to this latest upswing in the rashes was to cleanse with SebaMed (from cost co) then dry the skin with a hair dryer set to warm, them once the skin was very very dry, to put some Gold Bond medicated powder on it.  That helped a little. 

But last night it just got way worse.  Blisters and such.

Luckily the prednisone is also having a positive effect on all the damn tongue lesions.  Those are super painful too.

Again, thanks everyone!

Caroline