Suzie71, it's comforting to hear your story about your long-time experience with this disease. I am 76 and was diagnosed in November of 2023 after some alarming blood tests showing platelets of over 2,000. I was sent to a hematologist/oncologist, who I like very much and have confidence in, and after a bone marrow biopsy and further testing was told I have Ph+ CML. I'm struggling with a combination of fear, anger, depression (why me??), and of course, trying to learn as much as I possibly can about this disease. The support group here has been so helpful.
Any advice on handling the symptoms, both physical and mental, day-to-day? I'm in a clinical trial by Novartis and receive my very expensive medication, Tasigna (nilotinib), for free and attend appointments in Eugene, OR, about an hour and a half each way travel time, at first every two weeks, and now closer to two-three months apart. There are symptoms from taking the medicine but fortunately, they are fairly mild in my case, so far.
Thanks for being here.