5 replies to this topic

[Tedsey]

What is a Sprycel "rash" exactly?  What does it look like?  Is it relieved with dose reduction?  Prednisone?  I have had an all over body rash for the last 5+ years since starting dasatinib.  It is getting worse.  My skin is also just breaking open at just a small touch.  Whenever my kids touch me, my skin breaks open--seriously--and they are not coming at me with knives, just jagged little finger nails.  My hem/onc does not want to touch side effects.  And lately, I have seen doctors that tell me I need to go off Sprycel for certain meds to work.  Like, I am all out of options for antibiotics that don't react with the drug and one that I can take and not get violently ill from.  I have an hem/onc who won't approve lowering my dose.  Does anyone here know of a CML expert in Chicago not from NU.  I have already been there and found they know very little about CML.  Very into SCTs as a cure-all.  The hem/onc there told me at dx she wanted to give me one at 50.  Her plan was that I stay on Gleevec, never swtich to 2nd generation drugs--despite my response, and get a SCT at 50 to cure me (not sure why she picked 50, maybe that is the end of the line for being young enough for a SCT to work well).  The day she said this, I ran as far as I could (thanks to this board).  I have been PCRU/MMR off and on on dasatinib for the last 2+ years.  Hope I can make it to 50 without the need for a SCT like doc at NU predicted (or told me that was going to happen) so long ago.  This is why I am scared to go to NU.  Her words still haunt me.  She is the embodyment of Satan.  Maybe a CML expert would be willing to play with my dose to see if my rash improves (and lung issues--I am still sorting this out).  Does anyone know if Dr. Talzpez supports dose reduction for side effects and very low counts?

 

Thanks,

Tedsey

 

[simone4]

Teddy, I have just recovered from one of the worst rashes ever.
My dermatologist walked into the room and said that is a rash
from your cancer drug. She said she saw these hives in alot of
their pts that are on cancer meds.
So I call my onc and told them I am coming off of G for a week.
It was ok'd since I have never had a G. Holiday. So rash disappears
and that scares me because I have been on lowest dosage, 300 mg,
since month 3 of taking it. Anyway,I was prescribed a cream for
it. The rash came back 2 weeks after going back on G. I used the
cream (Clobestasol Propionate) twice a day for a week and it went
away.
Get someone to reduce your dosage. It is too much. And no onc.
wants to admit that these drugs cause rashes, especially when you
are this far out from first taking them.
What does it look like? Mine looks like hives this time, but
I have had sores on my tummy, rashes under my breast,etc.
Oh yeah, I have itching in my scalp, but derma. gave me a
bottle of drops for that and it has helped.
Take care,
Simone

[gerry]

Simone are you able to take an antihistamine - I took Periactin whilst I was on Gleevec. I was initially prescribed it for migraine prior to CML, but it seemed to help control the rash as well.

[pammartin]

I had horrible rashes on Sprycel. Mine were located on my chest, my neck, cheeks, nose, ears, and forehead. 

 

It would get so hot I swore my skin was burning off.  It took a while for them to calm down but I am sorry to say they never completely went away.

 

I hope you find relief with yours. They are awful

[simone4]

Gerry, yes I do take Zyrtec (p.m.) every day all year long.
I have begun the Benadryl a.m. It has helped with the itching,
but the cream I mentioned slowed it down when itcame back.
Thanks for your suggestion.
Simone

[gerry]

Last suggestion, you haven't been unwell of late, I had the rash make a reappearance when I had a virus.