Just got my 3-1/2 year results and I came in at PCRU according to Emory's PCR machine (limit of quantification = 0.0063% IS). It was unexpected, but obviously a very welcoming result. If it's actually correct, then I managed to drop at least a full log in 4 months (my April result = 0.05% IS). Is that even possible?
Some notes on my journey that might be interesting to others:
- I take a Genistein 125mg supplement each morning with Gleevec 400mg, Vitamin C 500mg & breakfast. Last year, I tried Genistein for 3 months and my PCR dropped from 0.04% to 0.01%. Then I stopped it for 3 months and my PCR rose slightly to 0.05%. Now I've been back on it for ~ 4 months and my PCR dropped below the 0.0063% detection limit. I find this very interesting! Perhaps this is an effective combo for my case?
- My bilirubin level is up a bit to 2.0, which is above the normal range - but obviously nothing to panic about. My other liver counts (AST/ALT) are fine. This could be Gleevec, or perhaps just a little too much good wine over the summer. Do any of you deal with elevated bilirubin?
- I deal with joint issues (knee tenderness right now; probably cartilage problems), which stinks since I love road cycling and it's really putting a damper on my routine right now. I asked my specialist about it and he said there's no link between Gleevec and joint cartilage. Probably just an overuse injury.
- I am treating my right knee with Voltaren Gel (sparingly). In looking back at the NSAID/imatinib study, the active ingredient in Voltaren Gel might have a 'positive' impact on the Gleevec uptake into CML cells. Interesting! Clearly this is a short-term treatment only, but I guess there's a small chance that it had some bearing on my PCR result.
Overall, I am grateful to still be alive and healthy! Sending positive vibes to all of you, my CML sisters & brothers...