I have just posted the updated ELNet recommendations on the home page. It is a very good overview of where we are today and is well worth a read.
I was particularly struck by a paragraph at the end under 'Discussion' which is so relevant to many patients who are looking at a possible 20; 30; 40 or even more years of life taking daily TKI therapy. This is why for many of us, getting down to a low % level of BCR-ABL1 transcripts such as MR3; MR4 and even lower, and staying there, is a very desirable goal.
2 years worth of stable PCRs at these kinds of levels might give the opportunity to try reducing the dose with for some the ultimate goal of stopping altogether. Some people (and in my opinion this includes those who are 'older' too) need to know that there is a possibility of treatment free remission, or at least a reduction in dose. The psychological effects of taking therapy for the rest of life are real and can lead to periods of depression, a fact that many of us might not recognise or might dismiss as being less important in the overall scheme of things.
Sandy
"The quality of life is also affected by the very fact that living together with a potentially fatal disease—CML is a cancer, after all—has emotional and social consequences affecting family and career planning and is accompanied by a variable level of uncertainty and fear.
It was not surprising that both physical and mental health were reported to be better and closer to normal in the older than in the younger patients, because younger have more and different expectations, not only of a normal life, but also of a life free from leukemia and from treatment.
Currently, the major goal of therapy is survival, but it is acknowledged that living without treatment and without detectable leukemia will be a major issue for clinical investigation, requiring the achievement of a deeper molecular response."
ELNet recommendations 2013
