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Inspirational Stories

Robert

chronic myeloid leukemia (CML)

I was diagnosed with chronic myeloid leukemia (CML) in February 2021 after a bone marrow biopsy. Since that time, over the past 2½ years, I have had very serious side effects from my chemotherapy medication treatments. I was first prescribed Gleevec® 400 mg in March 2021, my first tyrosine kinase inhibitor (TKI). However, this medication put me in the hospital at the end of March 2021. I had an angiogram to check my heart as I had five stents in my heart in September 2018. I had very severe fatigue and very serious malaise. I was then put on the chemotherapy medication Sprycel®, my second TKI. In April 2022, I was once again admitted to the hospital, this time with fluid around my heart, and I had a "pericardial window." After seven days, they drained 550 cc of blood and fluid from my heart. I was then put on the chemotherapy medication Tasigna®, my third TKI. However, in September 2022, I was once again hospitalized, this time with rhabdomyolysis, as I was barely able to walk. Then in October 2022, I fell because of the rhabdomyolysis, and I fractured my left shoulder, the humerus bone, and I was once again hospitalized for the fourth time. I spent four months in physical and occupational therapy to learn to walk once again. I was then put back on the Gleevec® but at a low dose of 100 mg. However, the results were as severe as when I had been put on the medication in March 2021.

In June 2023, I was sent to the Mayo Clinic in Rochester, Minnesota, for a second opinion, and my BCR/ABL1 was now up to 13.2%. In July 2023, I went to the Avera Cancer Institute in Sioux Falls, South Dakota for a third opinion. In both cases, the doctors recommended that I be put on bosutinib at a low dose of 100 mg. The doctors told me, "Unfortunately, no great options exist outside of bosutinib." I started to take the low dose of bosutinib on July 27, 2023. This is now the fourth TKI that I have been on. Unfortunately, this is my "last rodeo!" I am now doing weekly lab/bloodwork to very closely monitor both the effectiveness of the bosutinib and to see if any more severe side effects begin to develop from the bosutinib.

As of today, Wednesday, August 2, 2023, I have been on bosutinib 100 mg for seven days, and I am doing fine. I just hope and pray that this TKI will not only be effective but also not create any serious side effects. I also have comorbidities including type 2 diabetes and stage 3 kidney failure, in addition to coronary artery disease. The only good news is that my blood counts still remain normal.

chronic myeloid leukemia (CML)