Posted 08 April 2016 - 11:50 AM
I decided to resume my 20mg sprycel to test that indeed my PCR would drop back.
And It did - quickly.
After just two months, my levels went below 0.01% again where it remains currently. I will try cessation again - but probably one month on and one month off. Or maybe just not take the drug during the summer so I can tan better. I feel I can go months without TKI before a measurable increase occurs.
After we have our CML under control (either PCRU for a year, or at a very low level for an extended period of time) IMO we owe it to ourselves to see how low of a dosage it takes to maintain that level, if not ceasing TKI dosage completely, remembering that we can always increase our dosage if, and when, it becomes necessary. The longterm effects of TKI's aren't yet completely known. The less TKI we have to take the better off we are likely to be in the long run. This especially applies to older people, such as myself, but it does apply to anyone on a TKI. It's an opportunity to lessen longterm effects.
First, lowering dosage, a little at a time, a month before the next PCR, to see if it changes anything, is a suggestion. Only do what you are comfortable with. That could be 100mg one day, and 50mg the next, alternating dosage.
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