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Looking for experiences with the progression of MDS

Blood Cancers & Disorders | Last Active: Nov 30, 2024 | Replies (46)
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@jps01

Anne-Marie, thank you for the information on MDS Centers of Excellence. I am fortunate since I am now being followed at the Ottawa Hospital. But one of my stresses is that my children are pushing me to get a second opinion, in one of the United Sates larger well known centers. What is your opinion on this?

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Replies to "Anne-Marie, thank you for the information on MDS Centers of Excellence. I am fortunate since I..."
germaine9 | @germaine9 | Nov 12, 2023

Hi Jean-Pierre,
It never hurts to get another opinion, but it will cost you. I got an online second opinion from the Dana Farber Cancer Institute in Boston, and it cost over $3000 Canadian. I think it was worth it though because the hematologist recommended that Venetoclax be added to the Azacitidine my hematologist here in PEI was giving me. This will probably extend my life, but it is not a cure. The Dana Farber doctor also recommended a transplant which I am not going to do at the age of seventy. Some big transplant centres in the US transplant people even up to the age of 80, but I understood from your previous post that you don’t want a transplant.
Anne-Marie

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