Well, I started my 4th year on Gleevec and the sky hasn't fallen yet. The miracle of TKI medications! Any thoughts, feedback or encouragement about my journey is welcome as always:
- PCR went from 0.01% IS to 0.05% IS over the past three months. It's been bouncing around these levels ever since Emory Winship moved to International Standard in 2012. I wonder why Gleevec 400mg can't beat down my CML any further? I'm not sure what I can do differently to deepen my response, because dosage increase or TKI change is not advised by my CML specialist. His philosophy is pretty simple = (CCyR + stable MMR + manageable dose) = stay the course.
- My side effects have been very limited on 400mg - thank goodness. For me, the big thing is making sure that I take Gleevec with a decent amount of food; when I do, then the daily dose is uneventful. I'm taking probiotics occasionally to help with gut health, but I'm not sure if it's doing anything.
- I continue to take Vitamin C with Gleevec & breakfast every day, but with the fluctuating PCR, I'm not sure if it's doing anything either. There's no reason to stop taking it though. Or perhaps I should take more than 500mg?
- I'm voluntarily restarting a Genistein 125mg supplement with Gleevec. When I was taking it between Oct 13 - Jan 14, my PCR "fluctuated" down by 0.5 log. Perhaps it has some benefit. It doesn't appear to hurt though.
- As some of you might remember, I lost a quick 30 pounds over the first 5 months of my journey - primarily due to anxiety from the CML diagnosis. I was terrified that I was going to fade away to certain death, but my weight settled in and now I'm just a really thin guy (6'1", 148lb), but for all accounts, I appear to be healthy. One upside to being lightweight is that my road biking has reached an all-time high. I am planning to complete a couple of century races this year, as well as a 24-hour biking event to raise funds for cancer research. What better way to put my second lease on life to good use? I used to think that rigorous exercise was making a positive impact on my treatment response in some strange way - I now see that it doesn't, but it's great for staying healthy and keeping my mind calm.
- I now have to wrangle with insurance and the specialty pharmacy every 30 days to make sure I won't miss a dose - because they clearly don't care. The whole thing is just completely screwed up this year with the AFA regs kicking in. I miss the simple $60 per 90-day order that I used to be able to make on the phone in about 30 seconds - that was in 2011 and 2012. Unfortunately for me, I probably won't be able to pursue discontinution (given my treatment response is not deep enough), so I'm going to have to fight this battle literally until the day I die. But hey, it beats the alternative - and I'm sure I'm not the only one dealing with this.
- Anyone else been on Gleevec for a while (at least 3 - 5 years) and continue to hover near MMR? Just knowing if there are others out there who are living well with continued CCyR would give me a little bit of peace of mind.
- Anyone on combo-therapy trials with Gleevec right now? I'd be curious to hear more about this and how it's going.