I understand that the data set is still relatively fresh since TKIs haven’t been around for that long but does anyone have any reliable data, case studies, reports, etc on average survival rates and impact on average life expectancies for newly diagnosed patients being treated with second generation TKIs? Everyone tells me that I’ll live a normal life but I’ve found study results that aren’t as optimistic - based on the numbers I’ve seen it looks like many patients are only living a few years after their initial diagnosis.
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CML Survival Rates & Life Expectency
AF , I remember when my husband was diagnosed looking at the data available and thinking oh that doesn’t look so great. I was also scared by some of the Facebook CML sites where people were posting about giving up, or having to get a BMT. But I took so much more comfort from coming here and listening to people who have weathered this disease , sometimes now into their second decade , and who on the whole are doing great. And then the studies that are being done with patients reducing dosages, having so many more TKI options to try. There is really promising research coming out of Glasgow combining a TKI with an antiobiotic. Truly if there was a time to get CML I think it is now.
I know my husband has days now when he forgets he has CMLother than when he takes the pill. He is off wild camping for the next 3 nights with friends, only one of whom knows he has CML. He feels better than he did for several months at least before diagnosis. And there is Scuba fasting for us all:)
Hope you are feeling better now the meds are kicking in.
The numbers you are looking at have at least some pre-TKI population in them. Take a look at these 2 articles for example, especially the Swedish study
The reality is CML patients who respond to TKI therapy (FISH = zero; CCyR) will not die from CML. Won't happen.
In fact - CML patients who respond should be more concerned with diet and overall health and with TKI cardiovascular side effects than CML alone.
Becasue TKI's affect the heart - (Qt elongation principally), it is very important to adjust lifestyle and diet to maximize heart health.
CML patients will die of something else (hopefully old age) - not CML.
Very good news indeed.