Your Feed

Filter by
See content from
Back to the latest
Avatar
Margaret
Acute Myeloid Leukemia Discussion • September 4
Confused
I have high risk MDS/AML. I have been on AZACITIDINE and Venetoclac for over 2 1/2 years. I had a bone marrow biopsy in May this year that showed 5% blasts. I recently developed dizziness and fatigue and broke my leg. In the hospital they were talking to me like it was end of life for me. All my blood counts were extremely low. They did a blood smear of circulating blood and found there were no blasts circulating. My hematologist says it is the end, I refused to stop the chemo. I feel that I am getting mixed messages. Bone marrow biopsy in May was good enough. There are no circulating blasts. My oncologist is basing the end for based on low blood counts. I am confused.
Avatar
kitel88
Multiple Myeloma Discussion • September 2
Help with first treatment
I was recently diagnosed with myeloma, and my doctor is suggesting a stem cell transplant. After reading online, it looks like there are more modern treatments like CAR-T. Does anyone have experience with that as their first treatment?
Avatar
may33jen
Multiple Myeloma Discussion • August 31
Talvey
I recently finished my step up dosage of Talvey and experienced all the side effects of loss of taste, skin peeling, dry mouth, skin rash with itching. As I was getting ready for another dose in 2 weeks I came down with vertigo and gait imbalance. My doctor took me of Talvey and I am still dealing with vertigo and ataxia. Has anyone experienced this? Talvey can cause neurotoxicity to the cerebellum.
Avatar
fleetalee
Polycythemia Vera Discussion • August 31
Hair loss
“Has anyone with PV taken givinostat and experienced rapid diffuse hair thinning or hair loss? If so, what happened when the drug was continued or stopped?