Posted 09 October 2016 - 09:31 PM
Buzz, I have been very fortunate with ins covering my Sprycel, but with a new year coming I get a knot in my stomache wondering if they have any surprises for me. Ron and I are both retired on a fixed income we paid all our bills off with his severence pay so we live comfortably, and for the first time in our lives we have a small savings acct. You know how it is (send all your kids to college so they can get a job at McDonalds..If they start making me pay a large co-pay I will stop taking my Sprycel. My pcr has been 0% for six years. I just plain refuse to pay for it. And I just refuse to go back to work as a pole dancer.Gravity has been my enemy and if I got on a pole once I got upside down I would probably suffocate! Take care Billie
lol Billie, the visual is almost too much. If you get hit with a large, or any, burdensome Sprycel copay, maybe you should try to obtain a Sprycel copay assistance card that others here have mentioned. Otherwise, six years of undetected certainly qualifies you for an attempt at cessation.
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