Posted 12 March 2014 - 05:05 PM
The good news is that once off Sprycel there has been a gradual return to better quality of life. The major side effect when on Sprycel was debilitating fatigue: several naps per day, and living one day of activity followed by two days of no activity. BTW, I didn't have any major side effects when switching to Sprycel from Gleevec: no headaches, etc., which I put down to "it must have been the right TKI for me" as I also became PCRU within four months of starting it.
The "oh, well" news is that I continued to age while having CML (wait, that's the GOOD news, compared to the alternative!) and thus have arthritis in left knee, hearing loss (this happened a couple of month after starting Gleevec), ongoing fatigue (still there, just less), etc. — and no way of knowing if any or all of those are related to having had CML or having taken TKIs.
Basically, life goes on, we show up each day and give it our best shot, no matter what. I am unspeakably grateful to have had such an amazing response to TKIs to treat CML, and for over two years now to be as healthy as I am.
Best of luck to you and everyone,
P.S. For the record, I faithfully took 100mg Sprycel daily for 2 years and four months.
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!