This is my 13-month follow-up since stopping Sprycel 100mg on Sept. 13, 2011, after being consistently PCRU (0.000 w/o variation) since Sept. 14, 2009. At my request, I received permission to try stopping TKI treatment to see how I'd do, since as well as having been PCRU for two years, I had reached PCRU 11 months after dx, and four months after switching to Sprycel, due to side effects on Gleevec. My quality of life on Sprycel was dominated by extreme fatigue, some brain fog, bone and joint pain, etc., but no breathing problems. However, it looked good for my chances to live without TKIs, and to have a better quality of life, so I went for it.
When I asked to try being off Sprycel to see how I'd do, my onc had me consult with a CML specialist at Stanford. He, his assistant, and I went over everything and discussed all sides of the issues, checked my test results, and I was given their support in my one-person trial. For the first nine months I did PCR testing every month, and every month it remained 0.000. Then my onc and I decided it would be every four months we'd meet, having done blood work in advance.
I was looking forward to meeting with my onc yesterday, four months since our last meeting. I had had my blood work done three weeks ago, so there would be plenty of time for the PCR test results to come back. This result from Quest was to be the first since they started reporting in IS (Int'l Scale), and as all my PCR tests have been done by Quest since dx in Oct. 2008, I very much wanted to see if my constant-since-Sept. 2009 "0.000" test results would hold, given the new IS standard. A few folks on this board have had slightly raised results when their PCR testing switched to IS: I was curious how I'd do!
My onc said the results aren't back. So he'll see me in three months, instead of four. That works for me! (If the results show up, he'll call me if there is a problem; he just said that there was some problem with the test so no results were back.)
My CBC results would show if there was anything amiss, and my WBC is 4.44 (was 459k at dx, and 121k when I started Gleevec; ha!); platelets are 250 (they have always been in the normal range). The only things out of the normal range are ones that I bounce around in a little bit over the past year: Eo #-ABS is 0.89 — it was normal until Nov. 2011, when it went up to 1.11, then it went down a bit each month until I was in normal range from April to June this year, now it's higher again. On the low side is Neut #-ABS at 1.57, and again it has bounced between 1.23 in Apr. 2011 up to 2.59 in Jan. 2012. Nothing to worry about!
My quality of life is still affected by some fatigue: I can be active for a few days, then will sleep for 11 hours. On days when I've been too active, I nap for anywhere from 15 min. to 2 hours. / I'm 61 years old. Tomorrow I go see Bob Dylan and Mark Knopfler perform in Berkeley : I still enjoy life, but it's on my terms, no straining. As I had sudden hearing loss after starting Gleevec in Oct. 2008, I now have hearing aids, and that will improve the show for me (being a fan, there can be no doubt!). I had hoped that the hearing loss would improve after stopping Sprycel, but that's life. So is the arthritis in my knee, apparently!
That's all for now, folks. I am wishing you all the best of health and quality of life, and lots of love and bliss in your lives! Go Giants!!