Posted 12 April 2012 - 01:36 AM
Here's another "good news!" report to share (I WISH that there was already a central place to post all of these reports, they are beginning to add up!):
"I rarely post but I just wanted to say that yesterday was my anniversary -- the third year since discontinuing Gleevec in 2009. I was diagnossed with CML in June, 2000, was on interferon until December of that year until I was in the expanded clinical trial at Stanford University in California and started Gleevec. I reached PCR-undetectable in September, 2002, and have remained so over the years. I stopped Gleevec, with my doctor's permision April 9, 2009, and have remained PCR-U with every three-month check up since then. I am followed by Dr. Neil Shah at UCSF and we're both delighted with my progress. I'll continue (indefinitely? who knows?) having a PCR every three months. I hope that I might be one of those fortunate people who have been actually "cured" with Gleevec. Again, who knows.
Nancy B from Californi"
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!