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!
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!