Stopping Romedepsin

 Hi! 

After a set of 3 weekly IVs and then a set of 2 after a week off, I have decided I have to stop the Romedepsin. My oncologist is amenable to just about anything I want but I could see yesterday that she was hesitant because ... well, it's working. The swelling in my tonsils and lymph nodes in my neck are noticeably smaller. I am down to about 8mg of Prednisone with no swelling or pain in my joints. But...I just feel lousy all the time and I just can't deal with it anymore. 

It's similar to being pregnant when you feel generally unwell, suddenly need to lay down often, and feel better while eating whatever you feel like - only to feel bad again a few minutes later. My muscles feel weak and jittery inside. Lousy.

The oncologist is insisting on a new PET scan to document where I am at, "In case we need to know how Romedepsin worked for you in the future - if you need it."

I will wait to see if I need to start the Duvilisib, the oral pill suggested for me by Dr. Shustov in Seattle. Hopefully the insurance company will approve it now that I have "failed" two other conventional treatments although they don't like that I am not doing "Standard of Care." 

Other than that...we are doing fine and starting a series of trip for the summer. God bless you and I hope you get to enjoy some great summer fun too!!! 

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