Hi,
I was diagnosed with sezary syndrome 4 years ago, at stage 4a. I underwent treatment with mogamulizumad for four months, which caused my Crohn's to come out of remission; then had terrible arthritis which led to a spinal blood clot and near paralysis before being detected;and severe anemia. Stopped moga after 4 months. Have had 7 months of photopheresis - not effective, itch worse and spreading bodywide, severe hand and feet cracking. My oncologist restaged me as late 3,but wants to begin radiation immediately. I desperately want an honest prediction, which I know is only a prediction - but I am taking care of my wife of 46 years who now has dementia- and I can't plan with my family what to do without a better prediction- of maximum life expectancy at this stage, or at least the odds of livng another five years. Internet searching has got me nowhere. Thank you for your help!
