Posted 09 April 2015 - 03:47 PM
I'm still post-TKI (last Sprycel 100mg was on Sept. 14, 2011) and still PCRU (achieved PCRU Sept. 14, 2009; has never waivered at all since then).
• Dx Oct. 22, 2008 459K WBC, huge spleen, had been very fatigued for months and had lost over 30 lbs. in previous two months
• Had leukapheresis for a week, got WBC down to 121K, then started Gleevec 400mg
• Over next seven months there were awful side effects, sudden hearing loss, fatigue; lowered dosage, took TKI break for 4 weeks, etc.
• May 2009 switched to Sprycel 100mg; no headaches, easy transition
• Sept. 2009 achieved PCRU, fatigue + brain fog, etc., continued
• Received permission to stop Sprycel having been two-years PCRU, stayed on full dosage until then as onc didn't approve lower dosage
• After stopping TKI in Sept. 2011, have remained fatigued (PCP tested everything, now says must be Chronic Fatigue Syndrome), have extensive arthritis in neck, feet, ankles; had total knee replacement in Nov. 2014, healed quickly (was up & walking a bit on 3rd day), but muscles still hurt a bit
• Have been taking gummy multi-vitamins as dessert after dinner for a number of years, plus B vitamins, vit. D3 (just added vit. K2 + MK-7 Gold)
Enough about me! Very best wishes for everyone's good health, comfort, and joy in living ✨
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!