Below is an editorial by Dr. Schiffer
discussing the results that 50mg Dasatinib should be the starting dose for first line treatment:
https://onlinelibrary.wiley.com/doi/pdf/10.1002/cncr.31516
The Evolution of Dasatinib Dosage Over the Years and Its
Relevance to Other Anticancer Medications
It is powerful testimony that clinical trial outcomes are not perfect and that one size does not fit all. It is sad that so many doctors who are not researchers have no choice but to prescribe the full 100mg dose (and continue to do so) despite so much evidence that this could be hurting their patients. Fortunately, we learn and over time new protocols become established.
from the editorial linked above:
"these observations reinforce the desirabil-
ity of better defining the lowest effective dose, particularly
for drugs that are intended to be given for many years and
perhaps for life."
This forum, in so many ways, is at the forefront of research. All of us are like reporters following every trail of new data and knowledge that gets reported here before it is even published (in many cases years later). I knew that 100mg Dasatinib was a problem back in 2011. My doctor, (Cortes) said as much and never started me on the 100 mg dose. He dropped me to 20 mg and suggested it could likely work and spare me the side effects. I reported my experience to others (US forum), but some were afraid to try it because their doctor refused - saying things like it will cause "resistance" as if cancer is a bacteria and that clinical trials establishing the 100 mg dose are perfectly done. There is no "perfect" in science. There is only hypothesis testing and continual learning and refining. I am PCRU on 20 mg. Dasatinib. Imagine how many more patients would be likely to get the same outcome as me (although I do take vitamin D, curcumin, fasting, etc. which may be augmenting Dasatinib's lower dose effectiveness - we don't know, but I tried to stack the deck in my favor).
Benefits from nutrition - vitamin D, curcumin, fasting - all of these ideas are from anecdotal evidence and some scientific testing which moves us closer to better treatment. The data for these ideas are "us" - we are test subjects in our own personal trials to learn and apply. No pharmaceutical company would spend the money to 'clinically' trial in a true scientifically valid way what we have learned anecdotally. We could be wrong with little risk - but more importantly, what if we are right.
My advice to our fellow CML patients is to treat your doctor as one point of many points of information. To be willing to apply additional therapy especially when that therapy has no risk (i.e. dose modification, vitamin supplement, etc.). And most importantly to challenge your doctor with new data you discover and ask "why" not.
