New Member
Posted 15 October 2012 - 08:01 PM
I've been of Tasigna for two weeks now and the rash still persist so increased my Prednisone dosage to knock out the rash. But my CBC last Friday was one of my best ever, everything within normal limits. I'm still nervous about the Tasigna/Sprycel transition but enjoying the TKI vacation.
I'm scratching like a hound dog at a flea circus. Maybe I have the mange. Grrrrrrrr....
I have cancer but it doesn't have me
Member
Posted 15 October 2012 - 08:51 PM
Sorry to hear that you still are having that persistent rash off of Tasigna....but glad you had the TKI vacation.. and..congrats on the great CBC !
Janne
Dx'd: 8/2008. Started Gleevec 400 mg 11/08.
Drug break 2011.
Started Tasigna 4/11 450 mg.
Reduction to 300 mg Tasigna 1/2012.
PCRU 9/2012.
12/2012 Detectable.
PCRU 4/2013 through 3/2015. (Reduced to 150 mg 7/2014)
12/2015 ? slightly detectable at probably less than 0.01% per Mayo Clinic.
4/2016 PCRU. Still at 150 mg Tasigna.
CESSATION: stopped treatment 7/20/2017.
9/6/2017: barely detectable at 0.01%.
12/11/2017: PCR at 0.09% (did not do the monthly PCR testing.)
12/18/2017: Inevitable call from Onc. Started back on Tasigna at 150 mg. (Considering Sprycel low dose.)
Guest_billronm_*
Posted 15 October 2012 - 11:12 PM
Hi WW,
It probably takes a while for the T to leave your system. Can you use cortisone cream? That always helps me with crazy rashes. There is a 2% cortisone cream available with a prescription. Are you keeping your skin moisturised real good? Gold Bond has a real good ulta moisturizing cream. Dry skin will drive you crazy also. I am so glad to be on Sprycel, I think you'll keep a good response on S. And you'll probably be able to go down to 50 mg in a year or so. Also we have a well with really hard water. And if our water softener isn't working right my skin gets so dry. Even city water is hard, so with your sensitive skin right now (you know what the old saying is too much bathin will weaken ya). And you have to drink lots of water, instead of a shot and a beer, you have to have a shot and a beer and a shot of water. If that doesn't work there is always flea powder. Just kidding! Good luck Billie
Advanced Member
Posted 15 October 2012 - 11:52 PM
Very exciting time for you:
The only thing I can think of that might help a little is to check what you are eating, and reduce any foods that are heating. It seems that what we eat is directly reflected in our condition, so it might help to be eating cooling foods such as lots of leafy greens (except spinach), green beans, asparagus, zucchini, etc., and cut out for now the chilis, tomatoes, carrots, garlic, onions, and cut down on salt, pepper, ginger, etc.
For my whole-body Gleevec rash way back when, the Prednisone really helped, though my appetite was huge! As soon as the rash went away, I reduced the drug and got off it.
Good luck with the transition, and then the start of Sprycel!
ChrisC
Be alert, but not overly concerned.
• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week
• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)
• Oct. 28, 2008: CML confirmed, start Gleevec 400mg
• Oct. 31, 2008: sent home when WBC reached 121k
• On/off, reduced dose Gleevec for 7 months
• April 2009: Started Sprycel 100mg
• Sept. 2009: PCRU 0.000
• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)
• Currently: still steady PCRU, testing every 6 months 🤗
— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!
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