When the rubber meets the road

 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....

I made an appointment with my oncologist after reaching out to her about how bad I have been feeling. She started out by giving me a copy of a study she had found on the drug we want to try next, if needed. I've talked about it before, it's called Duvilisib or Copektra and Dr. Shustov in Seattle told me about it last summer when I consulted with him. He claims to be getting about 70% remission with his elderly patients who he doesn't want to put through Chemo and the Bone Marrow Transplant. That is pretty remarkable-almost unbelievable.  Anyhow, because it is not approved for my kind of lymphoma, we have to jump through these hoops of trying at least 2 other "failed" treatments. I did an IV today and have 1 - 2 more planned, each a week a part. Then we plan to stop it. It has worked in that I am reducing the Prednisone gradually without swelling, my tonsils are down to normal, and lymph nodes are smaller. But....I'm not tolerating it well with lasting feelings...