My mother was a Ďlurkerí on these forums, she read frequently but did not post much herself. Because she got so much out of reading the forums I wanted to post in the hopes that the community can also benefi from her experiences. My mother was diagnosed with MDS in July of 2017 she did a few cycles of Vidaza and achieved a complete remission for a few months, in 2018 it progressed to AML and she started dacogen, she tolerated the dacogen less well than the Vidaza, after the dacogen stopped working (blast counts were steady around 97%) the doctor offered her to try venclexta with Vidaza. She did the ramp up for four days, but stopped treatment after 7 days because of extremely low blood counts. She did a few shots of granix to boost her white blood cell count, but these seemed to cause a lot of pain, unclear if it was from joints of bones of muscles, but it was unpleasant. She stopped treatment on Tuesday and started hospice care. She lasted till Thursday morning. Her blood counts, RBC, WBC and platelets were all very low prior to starting hospice. From AML diagnosis to death was about 10 months, MDS to death was about 2 years.
In summary the venclexta was very effective at getting rid of the disease, but caused pan cytopenia in this case. Depending on your tolerance for pain and what else you have going on, I hope this helps other people make their own treatment decisions. Iíll the to answer any questions over the next few days.
Female, age 66, dx MDS RAEB with 15-20% blasts 9/2017. Blood counts have normalized after 3 rounds of Vidaza. Finished six cycles of Vidaza. No treatment since March 10, 2018. Currently monthly CBC, will resume Vidaza when blood counts are low.