Cycle 11, Day 1

August 18, 2023. When we made the trip down to San Francisco on Wednesday, I wasn’t sure if I would actually participate in Cycle 11, Day 1. I’ve spent a lot of brain power since my CT scans on August 9 wondering if it might be time to explore other treatment options since the impression of the chest CT continues to be “stable.”

Given the early success I enjoyed with the quick undetectability of the cancerous lymph node in my right pectoral muscle as well as the metastatic nodules in my left lung, it’s been disappointing to linger in “stability” for the last 6 months with regard to the nodules in my right lung .

I didn’t see Dr. Rugo on August 16. Instead I met with NP Joanne. Always included in these visits is my Research Coordinator Lindy. We discussed the same thing we always do…side effects, energy level, blood work, appetite…including the same questions…any pain? any falls? any new allergies? coughing better or worse?

Then we discussed the CT results and how there were no new findings other than my right lung was stable. Although, once again the radiologist felt compelled to note that, “compared to prior imaging dating back to 2022, these nodules are slightly larger.” I questioned why the radiologist felt that should be noted. I also asked about his first-time note about multifocal mucous plugging, and asked if that might explain the dry cough I’ve been experiencing the last couple of months, and what can be done to treat it. Plus, my tumor marker numbers, although slight, have gone steadily upwards since mid-April. I questioned whether it might be time for me to consider ending my participation in the trial, especially if there is another course of treatment that has proven successful in managing the issues I’m having in the right lung. I went on to say that I was not comfortable waiting another 6 weeks for the next CT scan, and that perhaps a referral to a pulmonologist for a second opinion might be prudent. Of course, these are all questions that can really only be answered by Dr. Rugo. I see her on September 6 (Cycle 12, Day 1).

Lindy did share an interesting fact about the study sponsor’s radiologist who also reviews my CT scans to determine if there is any change that might disqualify me from the trial. If the nodules in my lung have grown less than 10%, they are within the study guidelines and are considered stable. The radiologist then gives the green light for me to continue participating. I don’t know about you, but 10% seems like a big number. Is that why UCSF’s radiologist keeps noting the increase in size compared to prior imaging? For now, I have no answers. And, yes, I did Cycle 11, Day 1. Next week I’ll do Cycle 11, Day 8. Am I happy about it? Happy just isn’t the right word. But I guess if the current treatment keeps me stable, I’ll ride that wave until I get Dr. Rugo’s input and expert guidance.

All human wisdom is summed up in two words—wait and hope. —Alexandre Dumas