Not sure how when I was gathering info from LLS upon diagnosis that I missed the discussion boards. I sort of struggled along then found the CML group on facebook. Pretty much been my support system and always willing to play "do you have this symptom?' I also discovered the National CML Society. Then stumbled into ACS and there is info there. BUT never did I see a message board on the LLS?
I used the LLS for all info about my illness, treatment, etc.. JUST didnt know there was a support thread..SURE could have used this a year ago... OH WELL..
I was diagnosed Dec 2011, with CML at the age of 40. I started on Gleevec, then had issues that never seemed to be addressed. My children's Pediatrician suggest a find a CML Specialist so I then switched to a Cancer Hospital rather than a general Onc. MY doc is one of the top researchers in the US and currently doing trials on Ponatinib. I have now exhausted 2 of 3 and after 9 months on Sprycel, have been deemed intolerant to TKI's by my doctor. I have been reduced to 70mg and now on 50mg. NOT sure what will happen next, but I keep plugging away and hoping that my next BCR/ABL shows little change.
HUGS to my Fellow CML Warriors!