I haven't been posting lately, but I follow the board and continue to think of all of you and our ongoing CML journeys. Just a quick update on my journey for anyone who is interested, and some side-effect questions for our fellow CMLers:
- Diagnosed on Mar 26, 2011
- Started Gleevec 400mg on Apr 12 2011 (98% FISH @ dx, and +0.50 log above Atlanta Emory Winship's PCR baseline [not sure where their baseline value comes from])
- Jul 2011 : 3-months: 5% FISH, -0.72 log decrease from Emory's PCR baseline
- Oct 2011 : 6-months: 0% FISH, -1.67 log decrease
- Jan 2012 : 9-months: 0% FISH, -2.48 log decrease (-2.98 log decrease from my personal dx PCR baseline ratio)
Seems like the response is optimal so far and I'm hoping to reach MMR+ by the one-year point ... super thankful. Obviously I'm thinking about that critical two-year treatment point, so each test gives me more hope that I'm going to make it on Gleevec over the long haul. Of course, I do wonder how much quicker I would've responded if Tasigna or Sprycel had been prescribed as first line, but I'm too far along now to worry about it.
- Gleevec 400mg at 6:30am each day with a glass of water, banana and cooked, whole-grain oats + dried cranberries, granola and brown sugar. And a piping hot cup of coffee typically follows within 20 minutes of taking the dose. Normal meals / fluids during the day and a couple of glasses of red wine with dinner nightly. I've eliminated liquor (except on rare occasion) and did a major reduction in red meat intake post-diagnosis. I'm not taking any supplements, but I'm now considering adding Curcumin ... but I'd like to hear the latest from Michael and how he's doing.
- I just returned from a client work trip to London and shifted my routine to keep my body on the same "cycle" with the 5-hr time change, so I took the dose with lunch. Of course, this meant that I followed it with a delicious pint of bitter in the local pubs within 5 hours of taking my dose. So far, moderate amounts of caffeine and alcohol don't seem to be causing any problems with Gleevec. Whew.
- I continue to push a rigorous fitness routine with the belief that it's helping my bone marrow to recover and expose more leukemic cells for Gleevec destruction ... running several times per week and weights a couple of times per week. I actually had a gym workout the day before my blood draw, and sure enough, my liver AST level was slightly elevated. Remind me to chill a couple of days before my next draw...
- My CML specialist is not a believer in ongoing BMB/A unless one loses response, so I've only had one at diagnosis. All testing since that point has been through peripheral blood. No complaints, but I still do wonder if that's the right course over the first couple of years, since the guidelines call for some additional BMB/A after diagnosis.
Side Effects and Questions for the Group
- For the most part, I feel perfectly normal and healthy on a daily basis and continue to work full-time and juggle a packed family life with my wife + 3 kids. TKI treatment is really incredible stuff, and I'm so very thankful that I've been spared serious side effects (so far).
- CBC and CMP numbers look fine - WBC was back in the normal range for the first time since diagnosis (4.1). Yay! AST/ALT/AP liver levels are normal, but my bilirubin levels seem to be ticking up ~ 0.1 every three months (latest test = 1.4), but the CML specialist is not concerned, so I'm trying not to panic about it. Anyone else dealing with minor elevation of bilirubin levels?
- Something about my metabolism changed after I was diagnosed - I wonder if anyone else deals with this. I am 6'1" and was 42 yr old + 176 lb the day I was diagnosed (reasonably lean guy) and I barely finished a 5K road race that morning (running, walking, huff & puff in 27 minutes). 4 hours after the race, we received "the call" to report to the ER. 9-months into treatment, I'm now 43 yr old + 152 lb (very thin guy, LOL) and I can run a 5K in 21 minutes and a 10K in 44 minutes -- it's really exciting to have some decent running ability back and I have the researchers + donors + Dr. Druker to thank for it. I do run a lot, but even when I have lighter weeks of physical activity, I cannot seem to gain a single pound - and I'm eating like crazy. Gleevec metabolism change perhaps? My local oncologist wants to see me back up to ~ 160 lb ... not really sure what's going on here. I'm honestly not worried about it, but I wonder if anyone else has had a metabolism change like this? I had some nasty anxiety initially, which seemed to contribute to the rapid weight loss over the first few months...
- I don't appear to get the Gleevec fatigue, but I think my running and workout routine continues to mask it.
- I have minor edema under my eyes (barely noticeable) and in my saliva glands (my super-thin neck shows the symmetrical retention of fluid - a little weird looking). And over the past several weeks, I have developed a swollen left ankle at times .... it can be painful, but some days it doesn't swell at all. At first I thought I might have injured it from running, but I took some time off and it didn't help. Oh, and Saturday's 9.5 hour return flight definitely didn't help. My ankle was quite swollen even though I walked up and down the jet and stretched my legs every 1.5 hours. Any others getting edema in their feet / ankle(s), and if so, do you have a solution that works for you? I'm wondering if I should start scoring the pills taking 200mg in the morning, and 200mg in the evening to see if that helps, but something about breaking up the doses makes me nervous, especially since I like to have some red wine in the evenings. Thoughts anyone?
- I do get night sweats now and then, and they seem to flare up when I don't get as much sleep or when I'm working hard. I've pinged others on the board about this and it appears to be a case of the "CML sweats". I still don't understand why it happens though.
Thanks in advance for any comments and/or feedback, and now it's on to the one-year point in April.