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news - appointment with a cml specialist

Well, i had an appointment with a cml specialist last week because of my slow response and disorganized treatment that i have in my city. He's a great doctor and studied at fred hutchinson cancer research center. he told me that despite my slow response, i'm getting good results and that's no reason to change treatment now. he saw my pcr tests and said that i'm on the right track (14.4% at 3 months, 6.83% at 6 and 2.91% at seven months - he thinks my low result at 0.5% was really a mistake from the lab). he said that he doesn't see a plateau or response fail but we need to take a look at the cytogenetics and he also recommended a mutational analysis just to make sure - he doesn't think i have one - wich i did and i'm waiting for the results. He also told me that he prefer -if it's possible - nilotinib rather than dasatinib because it's safer and that he doesn't recommend obese people to have a stomach's reduction operation if they have CML because of poor absorption of the TKI. About BMT he said that the technique is much better now with great results. lastly, he said that the biggest problem in cml therapy is the adherence.

Cheers!!

Hi Lucas, I am glad you are pleased with your CML specialist and reassured by his view of your response. Now that you have a clearer view of your results i.e they have not plateaued - then I am sure you will be able to make the best choices for you continued care... whether you change TKI therapy etc. I am not sure why he thinks nilotinib is 'safer' than dasatinib, that would depend on your particular case and any other health issue/s that you might have. Remember, we are fortunate to have a choice in terms of the best TKI for the individual. I am also not sure that his statement about BMT safety, results, survival etc. There may be better techniques but GVHD is still the main problem. I do agree that adherence to therapy is a major problem.

Glad you are looking forward and I am sure you will see more zeros soon.

Sandy

Thanks for the kind words, sandy. I'm waiting for the mutational analysis. with i have no mutations my doctors want me to continue with glivec. he thinks my slow response is due to my high leukemia load (hig sokal score) and they don't think i have a mutation (the test wasn't in the guidelines now, but he order just to make sure) because of my steady response. About nilotinib, he's concerned about the pleural effusion and thinks nilotinib is easier to manage the side effects. About the BMT, he doesn't recommend, he just said that if someday i'll need one the technique is much better and there is a new medication - not approved yet - for GVHD wich had very good results. He said i don't have any major problem now but it was good that i anticipated future problems looking for a new opinion. Yesterday i had an appointment in my city and i met a woman who was 10% pcr at 6 months - despite 100% of adherence - and now -4 years after - she's 0.003% PCR. i hope that my story will be the same :)

just a quick update: i've just received my mutational analysis: no mutations. so glad :)

Great news Lucas.congratulations. now it is just a question of administering the suitable TKI

Thomas

Thanks, thomas!!

we'll give more time to glivec now :)