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Does anyone have chronic myeloid leukemia (CML)?
Blood Cancers & Disorders | Last Active: Feb 14 4:38am | Replies (64)Comment receiving replies
I was diagnosed in December 2020. Initially I had regular blood tests and when white cell count continued to rise had a bone marrow test done. I've been on Sprycel since January 2021. Until white cell count came down to normal level had blood test twice a week. Now in the 'boring stage' as my doctor calls it and only have test about every four months. The magic number I need to reach is 0.0000 in the blood test and I'm not there yet. Once I reach that I will be on medication for two years with the hope of then being taken off Sprycel. As far as dealing with the physical and emotional aspect, I get sick much easier. Any time I'm around sick grandkids I catch their cold or flu much quicker than before. I've lost several immediate family members in the last couple of years which has been extremely difficult but I don't know if not having CML would've made any difference. Losing both sisters at age 67 and I'm 61 made me do some serious soul searching. I hope this helps and if there's anything I can answer, I'll try. I'm far from an expert on the technical side of this disease though.
Replies to "I was diagnosed in December 2020. Initially I had regular blood tests and when white cell..."
I’ve been o prescribed sprycel have you had any bad side affects with this medication. I was on Gleevac but did not tolerate the medication mostly with severe edema any info will be helpful thank you
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Hi PAM: I hope you get to a PCR test of 0.000 soon, but I know people who have not made it to undetected, and they are still doing great. The invention of these TKI drugs, and the fact that we have a few choices of which one works better is a blessing. I was in the clinical trial for Gleevec back in 2000, and I did reach my undetectable status of 0.000 in 2002. I did not stop my Gleevec, and continued to take it until 2018 where it was giving me issues. My doctor told me to stop, and I would be monitored regularly with the intent that if my numbers were to start changing that I would be put on Tasigna. He does not feel I am a good candidate for the Sprycel due to possible pulmonary edema etc. I get my test in Feb, and if I am still undetected it will be 6 years of treatment free remission (TFR). My husband was so concerned about taking care of me all these years and I lost him to Esophageal Cancer in 2019. We just have to stay positive, and keep doing what we are doing. The research continues to find a cure, and that should encourage all of us with CML and other Cancer's Have a good day, because it is.