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Article posits that non adherance to treatment in CML is widespread! What about you?


I preface this by saying no judgement please. Do you all respect the posology prescribed by your physician. Did some of you actually decide to avoid the hassle of arguing with your doctors and just lower your dosage. I stumbled on this article that concluded with a study on drugs in general  and a CMLer that achieved Undetectable and even attempted TFR with ridiculously low dosage that CMLers just didn't respect their prescriptions and lied about it and therefore the standard treatment that we think is working is actually overtreatment. Is this true? I got to say I rolled my eyes reading this simply because the premises for their arguments are simply too thin. However I gotta say that knowing the freedom of the american spirit I can believe it (this article is from the US). Maybe a regional phenomenon ... Also it wasn't long ago that 800mg of imatinib was the recommended dosage, dose ranging  CML medication on so small a population must be a tall task . So do you respect your dosage? and if you don't is it intentional? If not why? Thanks!!


This is the quote from the article:

"A study about medication adherence showed that, in general, 18.9% of drugs that were considered to be important by physicians were actually being used incorrectly by patients, and that patient nonadherence was intentional approximately 50% of the time."

"Therefore, we believe that a significant number of patients with CML may actually be using lower doses of tyrosine kinase inhibitors than their physicians assume, because of side effects or the patients’ desire to maintain the relationship with their physician."

Personally I respect what the professionals say and if they say this is the dose to take then take it. If for any reason some are tempted to reduce dosage themselves without the advice of those professionals it is potentially very dangerous for a number of reasons. If some decide that taking a higher dose is inhibiting their quality of life this should be a open discussion to test reducing dose to see if you can maintain and reduce symptoms. I would never advocate taking a lower dose than prescribed. Some that have done this and achieved low levels and TFR are probably few and far between especially if one hasn’t achieved a minimum of CCYR and or MMR 3.

If you cannot have an honest relationship with your oncologist, it's time to find a new one. 

Lowering dose requires more frequent testing to insure the disease remains under control.  I know personally how bad side effects can be and how some docs resist dose reductions. I had to practically beg my oncologist for my first dose reduction and then he allowed the next 2 reductions without any resistance but made me test every 6 weeks for a while until we were sure my PCR did not increase.  If you are at or below MMR and have quality of life issues, there are now enough docs out there who are willing to permit dose reductions in a controlled setting, i.e. more frequent testing at least for a while.