Hello one and all. I have a post on another LLS site and one respondent suggested I post here.
The issue of treatment options and choosing the right one(s) for me is one I have struggled with since being diagnosed at age 52 in October 2015 (chronic phase). After experiencing 3.5 months of pure Gleevec hell, I was put on Tasigna as Spyrcel was not an option for medical reasons. I was immediately taken off of Tasigna after experiencing hypertensive crisis after the first dose. This occurred in March 2016.
At that point I was adamant about taking no more TKI therapy or any other treatment. My desire to stop was met with mixed reactions. While my family, friends and many professionals all said it was "my choice" to stop or continue treatment, there was a LOT of pressure to continue. I was told that I was too young, that I had not yet tried enough treatment, and that I "was not sick" (that was said by my oncology social worker).
After a lot of soul-searching and research that included dying from CML, I consented to begin low-dose Bosuif. After only 4 weeks of being off of TKIs, my BCR-ABL1 had gone from about 6% to 20%. After being off TKIs for a total of 8 weeks, I began Bosulif 100 mg daily (since April 23 - almost 8 weeks now). The nausea, fatigue, diarrhea and chemo-brain are not as severe as with the Gleevec at this low dose, but all are still impacting me greatly and negatively affecting my quality of life.
My dose of Bosulif will most likely increase very soon as my spleen is enlarged and very painful. That and my side effects are really increasing my inability to eat adequately. I find out today my latest BCR-ABL1 results. How I will accept and cope with more severe side effects, if any, I do not know at this time. I am still open to stopping treatment altogether if I get to the point again where I have no quality of life.
If anyone else is or has been struggling with similar issues, or has any feedback of any kind, please write. Many thanks for "listening" to my story. ARTWOMAN