Good luck on your next test Buzz, hope you reach your goal.
thanks r06ue1, and the same to you.
my real goal, like yours, is to make a difference, or at least leave a mark.
Posted 25 January 2016 - 09:07 AM
Good luck on your next test Buzz, hope you reach your goal.
thanks r06ue1, and the same to you.
my real goal, like yours, is to make a difference, or at least leave a mark.
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
Posted 22 July 2016 - 05:25 PM
My $.02, fatigue was a big issue for me and after about 1 - 1 1/2 years of cessation the fatigue was finally over with.
Posted 23 July 2016 - 11:38 AM
That's a hopeful piece of news. I read an article about using Ritalin successfully for (general) cancer fatigue, but then I also read a lot of stuff saying the evidence didn't hold up except at the extreme end. I don't know how my fatigue would be characterized. If I take the various standardized index questionnaires, I get a pretty extreme score! It affects everything and absolutely nothing helps. It makes me angry, too, that most of the recommendations are along the lines of "rest more" (throw strikes - gee thanks), "pace yourself" and "accept that you are diminished."
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
Posted 25 July 2016 - 02:10 PM
That's a hopeful piece of news. I read an article about using Ritalin successfully for (general) cancer fatigue, but then I also read a lot of stuff saying the evidence didn't hold up except at the extreme end. I don't know how my fatigue would be characterized. If I take the various standardized index questionnaires, I get a pretty extreme score! It affects everything and absolutely nothing helps. It makes me angry, too, that most of the recommendations are along the lines of "rest more" (throw strikes - gee thanks), "pace yourself" and "accept that you are diminished."
"Sure boss, but I'm pacing myself, because I'm diminished and you need to accept that".
Great.
rct
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