Finally trying Duvilisib/Copiktra

About 2 years ago, right at the beginning of the pandemic, I went to see Dr. Shustov in Seattle. On an lymphoma Facebook group, several people had talked about him as a specialist in T-Cell Lymphomas who, although he is a main-stream researcher and clinician, seemed to listen and use more common sense than the usual oncologist/hematologist who just goes along with the Standard of Care treatments, even though they all agree that they really don't work for most with T-Cell lymphomas. 

Dr. Shustov spent a very long time with Andy and I, explaining the mechanisms of AITL, what the treatments really do, how very dangerous bone marrow transplants are, and what he might consider. He suggested I try a drug he was involved in developing and that he had been using with his elderly patients that he didn't want to put through cytotoxic chemotherapy and possible transplant. He claimed he was getting terrific results. 

He has since left his practice and my oncologist, who I like but who I think if nothing more than a technician who just follows protocols, has agreed to try Duvilisib with me, now that I have "failed" the two required other treatments to get this covered by insurance. 

The morning of my most recent appointment, I got online to put together some questions and otherwise prepare for my appointment. 

What a cold bath that was! I found that Duvilisb/Copiktra has recently been pulled for anything but CLL/SLL because the company had not conducted the promised clinical studies on the drug. It was approved conditionally but now is not. Secondly, I had found data that 31% of people who took the drug in past trials have developed life-threatening side-effects like "fatal diarrhea," "rashes incompatible with life," serious infections, and PJP, the type of fungal pneumonia that HIV patients die of. 

When I thought I couldn't get the drug, my mind anxiously vacillated between feeling stuck "between a rock and a hard place" - again...and the thought that I have been so sweetly led through this whole thing that maybe God is saving me from something horrible. I worked hard to trust but I vascillated between all these feelings and thoughts all day.

And...it was oncology day and that always sends me. I was weepy all day, not knowing what my appointment would actually bring. 

Dr. Mellott was surprisingly confident that she could get the drug approved for me and is confident that it is the next best step. She agreed that I need to get off the Prednisone, advising me to keep taking the it for about a month while I start the Duvilisib. 

She informed me of something unfortunate, however. I need to take antibiotics while I take the Duvilisib. It is an immuno-suppresant and infection risk is significant. I asked her about gut health and she gave me what I consider to be an uninformed response. She said, "No, my patients seem to do fine on it." It reminds me of how the world of oncology generally works - whatever the sacrifice....just deal with the cancer - without real concern about the long term. 

I've prayed about it and plan to hold off on the anti-biotics for now. Besides, I was looking at the data and I should probably be taking an anti-viral or anti-fungal medications anyhow...not an anti-biotic. 

When I was doing my research, I found that a Dr. Steven Horowitz (funny - that is the name of one of my first serious boyfriends) is a lead researcher in T-Cell Lymphomas at Sloan Kettering in New York. He's done published research on Duvilisib, in fact. I asked my oncologist if she thinks it would be a good idea to reach out to him. She answered that she thought it would be a prudent idea.

I've decided to move forward with Dubilisib and see what happens. I've been on it for almost a week and I'm so pleased that I have not been nauseous, which is a common side effect and something I've dealt with so much with the other 2 drugs I've tried. I've also decided not to take the anti-biotics unless I have evidence of infection or exposure to infection, for now.

Dr. Horowitz may be the next step, if needed. 

Who knows, I might be one of the very lucky ones who go into remission with this drug. For now, as always, it's one-day-at-a-time, trusting in the process. 

Something I am spending time thinking about is how much I have been preparing for death rather than preparing for a long life. This is not morbid, in my mind, but a subtle thought in the background of my life that can have negative and positive impacts. It's something to think about, though. Probably more on that later. 

Hugs!