Posted 19 February 2017 - 11:20 PM
A year, or two, ago, I caught part of a Charlie Rose segment where he was interviewing a high level CML specialist with Harvard. The specialist said that if they randomly tested people off of the street they would detect very low levels of CML in up to 7% of them. In those people the immune system is maintaining control of the level of the CML.
Adding to that, during the STIM2 Stop Study (patients treated only with imatinib; MR4.5 DMR of at least 2 years duration;. median age 61, 62 men. 62 women
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
2018 01/16 TFR PCR result pending... 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.
Posted 20 February 2017 - 06:46 AM
A theory of mine is that those of us that are able to stop the medication always had it in them to beat it but at some point their immune systems became weaker which allowed the CML to overwhelm them. Once the drug beat it back, their immune systems were able to take over once again.
Just a theory and I'm sure there are many doctors and scientists who have thought the same thing. Proving it will take a major step in our technology since capturing an immune system response controlling a CML cell would be like finding one specific grain of sand along the coastline of America.
08/2015 Initial PCR: 66.392%
12/2015 PCR: 1.573%
03/2016 PCR: 0.153%
06/2016 PCR: 0.070%
09/2016 PCR: 0.052%
12/2016 PCR: 0.036%
03/2017 PCR: 0.029%
06/2017 PCR: 0.028%
09/2017 PCR: 0.025%
12/2017 PCR: 0.018%
Taking Imatinib 400 mg
Posted 20 February 2017 - 07:45 AM
Don't think it is the reason for most CMLers, something else has gone wrong in their immune system.
Also explains why some TFRers get blips occasionally.
Posted 20 February 2017 - 10:24 AM
This testing of healthy people and trying to show they have detectable levels of bcr-abl is always done using highly questionable PCR methods which are unauthorized by the manufacturers. The most recent article cited above really stretched the PCR methods. Most likely they are inducing false positives.
Posted 20 February 2017 - 12:51 PM
Posted 20 February 2017 - 09:20 PM
If you look at the data nothing is consistent among the various researchers who have done this testing (4 of them over the past 20 years -- none of them prominent researchers). Two of the research reports showed 69% and 77% of healthy individuals tested had P190 bcr-abl, far more than had P210 bcr-abl. Absurd. For people with CML this breakpoint is relatively rare (less than 2%). The most recent test claims that children have bcr-abl about as often as adults, which is also absurd. Some claim cord blood has bcr-abl in significant numbers. With so many inconsistencies in the findings and data which does not even pass the giggle test, a reasonable person must conclude the methods and therefore data are flawed.
1 user(s) are reading this topic
0 members, 1 guests, 0 anonymous users