7 replies to this topic

[Marnie]

Going in to see the doc and get PCR results next week.  I am wondering if any of you have had this issue and if I should bring it up to my onc, or if it's unrelated to Sprycel and just some skin thing that needs to be checked by a dermatologist.  My oncologist is always skeptical about things being related to TKIs or CML.  Thus, my interest in knowing if any of you have noticed something similar.

I've had something weird going on with my ear.  Started last March.  The inside of my ear is scabby and horrifically itchy.  It will almost heal up and then scab up again.  It's a problem because during motorcycle season I wear custom-fit ear plugs. . .I thought that maybe that was what had caused the initial irritation. . .but haven't been biking for months now and the rash-thing has been on and off for about 11 months now. It is really itchy and really painful.   No way I'll be able to put in the ear plugs. . so the damned thing MUST be cleared up in about a month!   I also have another rashy thing  (no jokes allowed here, please), on my butt cheek, right where the butt becomes the leg.  It is itchy and a hard lump under the skin.  It is so itchy I actually scratched it bloody (no. . .not in public).

So. . .is this a Sprycel rash??  OR maybe I'm allergic to work and should fill out a workman's comp form and hope I can quit my job??!!

Any rashy, scabby people out there. . .let me know!

Marnie

[Sneezy12]

The ear problem could be a Fungal Infection (External Otitis). OTC Domeboro soln. may help, but you should be evaluated by an ENT Physician. An OTC Cortisone cream should help the Buttock rash. Good Luck! Frank

[Trey]

I have had skin issues over the years since using Gleevec.  I get some widely scattered  spots that seem to be multiple skin layers piling up  in a mound a little smaller than a dime (or maybe it is skin thickening rather than layers).  They first grow up slowly into a circular mound and are pliable, but then become crusty and can flake off after a couple months and then will be gone completely.  Often they return in the same spot a couple months or so later.  It is not a rash, but rather seems to be skin growing out of control in these spots, and is mostly the same color as my regular skin.  My Onc is having me see a Dermatologist in a couple weeks.

Since the TKI drugs inhibit several off-target kinases, some of them important to skin growth regulation (including c-Kit and PDGFR), this off-target kinase inhibition is likely the cause. 

[Marnie]

I think it's probably time to see a dermatologist.  The ear has been driving me crazy for months.  Looked up External Otitis, and it is definitely not that.  That looked pretty gross.  Mine is in the outer ear, just continual scabbing and crusting.  The butt/leg thing is weird.  Not exactly quite a rash, but getting weirder by the day.  I can't see it very well.. . try holding a mirror in order to see your own lower keister.  Thought about using my phone to take a picture so I could actually get a good look at it, but the thought of that sort of picture on any electronic device . . .no, maybe not!! 

I will do a little research on c-Kit and PDBFR this weekend before seeing the doc on Tuesday.  Last appt with the doc was a little frustrating because the lab didn't get my PCR results to the doc's office.  Never seen my doc get so heated before.  He was irritated about that.  So yesterday I called the lab across town.  They said the test was done and results were sent to doc's office.  So I called the doc's office. . .and. . .of course.. ..they did not have the results.  At least I got the ball rolling.  The PA is on the chase.  How fricking difficult can it be to fax something across town? 

Anyway. . .thanks for all of the info and suggestions. . 

[Taylor]

Interesting!  I have what both you and Trey describe.  I also had psoriasis before leukemia though, so I thought these were basically that, except that these new things are indeed more circular than I've ever had prior.

[Antilogical]

Count me in on the skin issues.  I've got something going on with the skin inside my ears, too, so - coincidentally - I made a note today to discuss it with my PCP on the next visit.  Also, I'm getting weird bumps under the skin, almost like all of my pores are plugged.

I have one other skin issue that I REFUSE to discuss in any forum, so you'll all have to surmise what that is!

[JeffJ]

You can add me to the list of people with skin issues, since being on Sprycel, 100 mg.  Marnie, I had the ear thing as well, it comes and goes.  Found it cures faster by leaving it alone. (very difficult I may add! ). Also, have the rash thats feels like it is under skin too.  Rash seems to pop up in different places.  Went off Sprycel  for 3 weeks and rash was gone in about a week.  When put back on the rash came back as well.  My skin has never been this bad ever.  The pharmacy is making lots of money with me trying different lotions!  Hope your rash gets better soon.  Jeff

[Marnie]

You are right about the ear thing, Jeff.  I've been tying my hands down so that I quit scratching at my ear.  I've been using Neosporin on it, and it has mostly cleared up. . .but I've gone thru this routine before, and I know that it will be back.  The other rash is almost gone, though it still feels weird under my skin. . .a big hard lump. 

Seeing my onc tomorrow--crossing my fingers for .000.  Actually, mostly crossing my fingers that the lab across town got my results to my doc's office.  Last time it was a major hassle. 

Then on to the P.T. to see if they can give me some exercises to hopefully strengthen and heal my shoulder muscle.  Geez. . .everything is falling apart!

Marnie