Posted 08 December 2016 - 04:31 PM
Buzz - You are probably right, but...
(1) I don't like to play with dosages without letting the doc know, &
(2) during my last office visit with my HEM/ONC, I had a somewhat unpleasant conversation when I asked the ONC his opinion of dropping my dosage of Gleevec to 200mg, since my PCR results have always been extremely low & stable. Before I could get a word out to further explain my goal of reducing the cost of medicines once I'm on Medicare, THE ONC WENT BALLISTIC! I got a long, animated lecture about not respecting how dangerous the disease is, that I'm on a reduced dose (300mg) anyway, that reduction often leads to uncontrolled mutation (!!!) & I could die, etc. I said ok, you're the expert, we can keep an eye on the reduction trials. That lead to another outburst. The ONC then said I was welcome to get a 2nd opinion, but if I or another doc ever reduced my dose, I was basically fired as a patient. I just sat there in silence, afraid to bring anything else up. My theory is that maybe someone stopped taking their meds on their own & relapsed badly. My family doc thinks the ONC was just having a bad day. Before this, I was able to discuss anything with him. Not this time.
Antilogical, sorry that you had such an unfortunate experience with your oncologist. It doesn't sound as if he is up to date on dosage reduction with his mention that it can lead to uncontrolled mutation and that you could die. It may well be time for you to look into finding a more open minded forward thinking oncologist.
My oncologist didn't want me to originally begin reducing my dosage, let alone continue to reduce my dosage, but she was willing to listen to my arguments and understanding all along the way. Once she understood that I had read through all of the available Stop Studies and knew the odds and obstacles she was OK with it, although she did argue against every added reduction.
This is a learning experience for all of us, including the oncologists.
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