6 replies to this topic

[survenant]

See    Presence of bcr‑abl fusion transcripts in healthy individuals  

[Buzzm1]

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 

76 of 124 (61%) remained treatment free ... However 41 experienced a BCR-ABL RQ-PCR fluctuation without clear molecular relapse (relapse defined as loss of MMR). In this so-called-fluctuation group of patients, 7 were found positive once, 6 twice, 12 patients between 3 and 5 times, 10 patients between 6 and 10 times and 6 patients more than 10 times confirming that BCR-ABL reappearance does not mean automatically clinical relapse. Stop Studies
 

[r06ue1]

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.

[gerry]

I agree, in my case I feel it was a number of years spent as a carer plus working full time - high levels of stress for me that impacted my immune system. My doc doesn't necessarily agree, but he can't give me a better reason for being TFR. He just shrugs his shoulders and says maybe.
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.

[Trey]

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. 

[gerry]

I wouldn't think the testing would be good enough, it currently fails us in picking up the CML at the very low levels.

[Trey]

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.