Hi everyone,
We had a nice event last evening in Atlanta. It is always encouraging when you meet new folks and have to ask "So, which one of you is living with CML?" -- you just can't tell on the surface, and that continues to reinforce how fortunate we are to have amazing TKIs available for treatment.
One interesting anecdote from one of the attendees - I met someone who was diagnosed with CML the same month that Gleevec was FDA approved (May 2001). The first year of treatment was quite the rollercoaster, because the person's doc watched the FISH/PCR decline but continued to push for BMT since they didn't know how long the med would actually work. But 1 year+ into treatment, they consulted with a BMT specialist who recommended that the Gleevec treatment continue, so BMT was never needed. So amazing. That said, Gleevec did eventually fail for this person 9 years into 400mg ... and that was after reaching PCRU within the first 12 months of treatment. However, this patient was immediately switched to Sprycel and regained PCRU quickly and has stayed there for the past 1.5 years. Fantastic.
Yeah, I'm on Gleevec 400mg, so I'm a little rattled to hear that a quick response over the first year or two doesn't guarantee that it'll be durable for at least 10 years (which we all know anyway), but this person did admit that missing doses became a challenge several years into treatment; mainly because this individual simply forgot about CML! When response was lost at the 9 year point, they did a Kinase Mutation Test and it was negative, so the root cause of the failure was considered a mystery. Perhaps missing doses eventually caused a form of resistance? Who knows, but Sprycel did the trick.
Thought this might be a helpful anecdote for folks...
