clarity, updates, and why the infusion center does not have buzzers

Today, Sophia came with me for all of the appointments and I am super-grateful to have had someone with me. It was a hard day and I feel like I am beginning to face some tough realities. 

First, we met with Tiye my NP and I was able to ask many of the questions that had formed after our meeting with Dr. Drake. Most importantly, I got more clarity on was expected at this point in treatment. While Dr. Drake was super positive about stopping the progression of the cancer ("stable disease"), it sounds like the actual hope had been that there would have been more of a response to the treatment. This is why Dr. Drake was proposing switching to the other drug. (That was not clear to us before.)

Many (mostly much older) people choose to live their lives by continuing to live with the current treatment and stable disease.  This does not feel like a good plan given my age, goals, and hopes for the future. 

In order for me to stop treatment, I would need to have a "complete response" meaning that the tumor goes away entirely. The tricky piece, of course, is that the likelihood of a "complete response" is not particularly large (6% - 9%).  All is not hopeless, it is just a tough reality. 

I asked what my prognostic risk is (a term that is used in much of the information about the treatments). Tiye was not sure, but thought it was "intermediate." 

As for side effects, I spent some time with the dermatologist trying to help with my skin. I am also going to go to an ENT to check in on my sore throat which I've had for over a month now. It hurts to swallow anything including saliva. This mostly just means I am losing a bit of weight and am dehydrated. I am also going to see a physical therapist to help me get moving more and to manage the arthritis and pain around the lipoma in my back. 

The infusion today was fine. We were done in about 3 hours. I did speak with a manager and ask why their system was so terrible (ineffectively shouting full names "LeTard Amanda" across the room feels rather insensitive and just stupid) rather than, like, Panera-style buzzers. Apparently they used to have buzzers, but people lose them and it didn't work. I find it hard to believe that their yelling system is better, but apparently you can't trust people with buzzers. 

My next infusions are 12/10/19 and 1/6/19 (I get an extra week for the holidays). My next scans are set for January 21st which will likely tell us if we are going to give the pembro/axi treatment another shot, or if we are switching to ipi/nivo.