Anyone??
My mom was diagnosed with CML about two years ago. She initially started treatment with a TKI, Tasigna (nilotinib). After some blood work, we were told that she was responding well to treatment and heading toward remission. However, the very next day, she was hospitalized after experiencing an SVT episode. We were then told that her CML had progressed to AML and that the doctors wanted to start aggressive chemotherapy. We decided not to pursue the aggressive chemotherapy at that time, and her doctor put her back on Tasigna.
Her blast numbers initially went down, but she then developed severe bone pain. It became so bad that she could barely stand, walk, bathe, or do basic daily activities. She also lost approximately 60 pounds in just three months. Since then, it has been an uphill battle.
I eventually switched her to a different doctor, who started her on a different-generation TKI. Thankfully, the new medication significantly improved her bone pain, and for a while things seemed to be going in a better direction.
However, she has now been requiring blood and platelet transfusions almost every week because her hemoglobin keeps dropping to around 6 and her platelets to around 8.
This week has been especially stressful and confusing. She underwent her fourth bone marrow biopsy, and initially we were told that they didn't see anything concerning and that the biopsy appeared to show remission. Then an attending doctor told her that her blast count was 54%. Later, another doctor came in and said the biopsy results indicated remission.
I am completely confused and terrified because those two things seem like they cannot both be true. My mom is also experiencing more pain than ever right now.
Has anyone else gone through something similar with CML progressing or possibly transforming to AML? Can blast counts and biopsy results be this different, or is there something specific we should be asking her doctors to clarify?
I’m just looking for anyone who has experienced something similar and can help us understand what questions we should be asking. We are scared, overwhelmed, and trying to advocate for my mom as best as we can.