Vidaza, increased bleeding and MD wants to give less plateletts

[Diane Toman]

My husband is on his 4th round of Vidaza and yes he seems worse especially in the last 2 weeks. He has petechiae all over now and a lot of oral bleeding plus blood in his urine. The tx physician wants to not give platelets unless his platelets are below 5000 and they have been 3000 with platelets 2x a week. He has an appointment at a Center of Excellence on Sept. 29th. Is not giving more platelets and bleeding in his best interest. He only gets blood 1-2 x per week. He also is noticeable sob but his o2 sat is ok at the present. Advice needed. Thanks

[Suzanne Bloom]

Hi Diane,

I have MDS low platelets ( 25 x 10 ^ 3 which is 25,000) and low white cells. I am not on Vidaza. I am still watch and wait. I have a local cancer doctor and a Center of Excellence (CE) doctor. There opinions vary greatly. My local doc has a general rule anything less than 20,000 you need platelets. However, my CE doc does not agree. CE doc says only transfuse if needed, excessive bleeding or hemorrhage. I do consider my CE doc the expert as he only treats MDS patients and can cure me via Bone marrow transplant vs. my local doc treats multiple cancers and cannot cure me.

I was told by both docs that Platelets, can be transfused and easily go what the doctors call “POOF”. Meaning they don’t necessarily always transfuse, they can disappear, thus the CE doc attitude only transfuse platelets when absolutely necessary.

Can you call your Center of Excellence and Explain your dilemma, and by chance ask is an appointment available sooner than Sept 29?
Good Luck, Suzanne

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