I went to Dana Farber today with Lisa. I saw Tina (APRN) and Dr. Munshi and they have a maintenance therapy plan for me. I am not sure why it was so confusing, but I had to listen to the recording I took of the appointment about 5 or 6 times, taking notes to understand what the plan is. And I am still not certain I have it right. It’s always a little bit complicated because drugs have chemical names and brand names and they are often used interchangeably in the same sentence. And Dr. Munshi talks fast, and everyone was wearing masks and Dr. Munshi (and Lisa) were double-masked.
This is what I think is happening starting next week (Jan. 20) or the week after (Jan. 27) depending upon how fast appointments and insurance approval can happen.
Kyprolis/carfilzomib (infusion), every week, 3 weeks on, one week off
Darzalex/daratumumab (injection), weekly
Pomalyst/pomalidomide (pill), every day, I think 3 weeks on and one week off, they didn’t mention this but that is how it is typically prescribed
Month 3 and going forward
I have been on all three of these drugs previously, but not together in this combination.
I may also need dexamethasone (steroid) with the Kyprolis for the first few infusions to avoid a reaction. Kyprolis is the infusion that burned my veins. I am considering getting a port. I am told that patients often put off getting a port, but when they get one they wish they had done it sooner.
In other news, I tested positive for COVID-19 on December 23rd. I had mild symptoms and I was able to get sotrovimab, a monoclonal antibody, from Dana Farber on December 27th. Scot tested positive 6 days later, also with mild symptoms. The good news is that I likely have some immunity now.
Currently, I am feeling really good. My energy and strength are back and I have no lingering symptoms of myeloma nor COVID-19. It has been lovely feeling good and not being on any treatment medications, but it also gives me some anxiety, my cancer being left to its own devices. So back I go to my friends, the lovely oncology nurses at Smilow!