Advanced Member
Posted 08 August 2015 - 04:39 AM
Trey: What are your thoughts on dose reduction during the "plateau"?
Ive been hovering around MR4 for 30 months now on my 400mg of Imatinib. Not that i am going to try it anytime soon, but i am interested to hear your thoughts on the subject as my side effects aren't lessening to say the least.
Advanced Member
Posted 08 August 2015 - 08:32 AM
Teddy,
At a consistent PCR of .01% for 30 months this is not so much like a plateau but rather is more like teetering on the edge of detectability (we shall name this TED in your honor). I would first ask your Onc if this number is real or is it rounded up from some barely detectable level which most labs would ignore as noise or else call it "below the level of quantification".
Let's assume they are real detections. Personally, I would not lower the dosage yet but would continue to drive this down deep into undetectability. However, I would do it by switching to another drug. The Gleevec is not reaching up far enough into the progenitor/stem cell lines for you, and another drug might finish the job more quickly. Your Onc may not like my idea, but that is what I think.
Advanced Member
Posted 08 August 2015 - 05:16 PM
Thank you for replying.
Seems i have a sensitive lab.....
Changing meds has not been an option for me yet, guess ill stay the course a while longer, maybe up the dosage before my next pcr to see if anything happens. (Like you suggested earlier)
And as you suspected, my onc wont be thrilled with the idea of changing meds, she is very happy with my progress.
Advanced Member
Posted 08 August 2015 - 07:11 PM
TED,
I think your lab is probably rounding up from barely detectable. At many labs that would be PCRU. For instance, you would have been PCRU at MD Anderson for most of the past 30 months and consuming mass quantities of Aquavit (which mistranslates into English as "vitamin water") to wash down mass quantities of Lutefisk (which needs no translation).
Edited by Trey, 08 August 2015 - 07:12 PM.
Advanced Member
Posted 08 August 2015 - 07:22 PM
Teddy,
At a consistent PCR of .01% for 30 months this is not so much like a plateau but rather is more like teetering on the edge of detectability (we shall name this TED in your honor). I would first ask your Onc if this number is real or is it rounded up from some barely detectable level which most labs would ignore as noise or else call it "below the level of quantification".
Let's assume they are real detections. Personally, I would not lower the dosage yet but would continue to drive this down deep into undetectability. However, I would do it by switching to another drug. The Gleevec is not reaching up far enough into the progenitor/stem cell lines for you, and another drug might finish the job more quickly. Your Onc may not like my idea, but that is what I think.
Thinking ahead, if I lose PCRU somewhere along my journey of reducing my Gleevec dosage (currently 200mg), leading to eventual cessation, I'll be lobbying my Onc to switch me over to Sprycel 50mg.
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
Advanced Member
Posted 09 August 2015 - 02:38 AM
TED,
I think your lab is probably rounding up from barely detectable. At many labs that would be PCRU. For instance, you would have been PCRU at MD Anderson for most of the past 30 months and consuming mass quantities of Aquavit (which mistranslates into English as "vitamin water") to wash down mass quantities of Lutefisk (which needs no translation).
Mmmmm, Aquavit.
Its usually consumed winter time, especially during Christmas, but i would definitely made an exception for PCRU 
Lutefisk on the other hand,,,,,,,, well,,,,,, id have to have a lot of Aquavit with it 
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