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I've had CML for 20 years and want to encourage others
Blood Cancers & Disorders | Last Active: 1 day ago | Replies (102)Comment receiving replies
Being told you have Leukemia is the worst day of your life, but I was diagnosed in 1998 with CML, and I am still here to encourage and support anybody who does not know what to expect.
I am now at the 6 year mark of still holding undetectable since July of 2001. Its a lifelong battle, but the best thing is that it is treatable. Diagnosed when I was 52 years old, and I will be 77 this coming November. I did not have a bone marrow transplant.
Replies to "Being told you have Leukemia is the worst day of your life, but I was diagnosed..."
Hi @suzie71, hearing from longtime survivors like you offers hope. You're very kind to offer private messaging with specific members. However, I’d like to underline the benefit of sharing in the group discussions. By posting in the CML-related discussions in the Blood Cancers group many can benefit from your knowledge and experience, including those people living with CML who haven't posted yet. 🙂
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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.