It is hard to believe, but twenty years ago today, I was diagnosed with CML. It feels like a lifetime ago and so much has changed in my life. Clearly, CML is not as prominent as it once was in my life. My last blog post was 5 years ago. Today, CML is primarily on the backburner in my life. I do have a couple of visits per year to my oncologist. I take my Gleevec daily as well. My symptoms have been in check for a long time with minimal side effects.
The only more recent development in my CML journey has to do with the long-term effects of Gleevec. More recently over the past several years, my phosphorous levels have been rather low. The concern about this finding is that it relates to bone health and potential osteoporosis down the line. I am now working with an endocrinologist who has ruled out other causes for the low phosphorous and is quite convinced it relates to the long-term use of Gleevec. Fortunately, the treatment is rather simple. I take a calcium supplement (which helps produce more phosphorous) and I take phosphorous supplements. While I don't love adding more medications to my daily regimen, if this helps fight osteoporosis, it is worth it.
I sometimes think back to beginning of my CML journey from the day I was diagnosed, when I was having multiple tests done, talking about some scary treatment options, and eventually starting on Gleevec. Once my PCRs started to decrease, so did the anxiety. I no longer feel the angst of waiting for test results since my numbers have been quite steady for so long.
I am grateful for all the support I have received over the years. I am even more grateful for the fact that people no longer ask me how I am feeling. I always struggled with that as I never felt sick. I am so lucky to have been diagnosed after an incredible medication was developed that changed CML from a death sentence into a manageable chronic condition. It has been unbelievable to watch the progress in the field and the many treatment options now available to CML patients. I hope that CML remains a slight distraction in my life and nothing more.
