Skiing into infusion #69

This morning I wend skiing with my brother at the Canyons at Park City. I have a season pass at Snowbasin, but he had a free guest pass so went to his "home" resort. We spent the morning on the groomers -- the off-piste stuff was pretty skied out. At about 1 pm I we called it a day and I drove down to the Huntsman Cancer Center's Farmington location for my monthly infusion - lucky number 69!

After labs and vitals, I met with my oncologist, Dr. Ben Maughan. I had not spoken with him for about three months, although we'd traded emails. The question of the moment is whether I should suspend my treatments in March, since it will have been two years since I resumed my nivolumab treatments, He acknowledged that there is an emerging consensus that two years of therapy is probably enough for the body's immune system to learn how to break the PD-1/PD-L1 link and destroy the cancer cells that were using that camouflage. I noted my concern that my rash on my face was getting worse (reflecting likely immunotherapy-induced dermal toxicity), and we shared a laugh about my visit to the dermatologist who likely had no idea what that was. I also reported how the frequency of my loose bowel movements was slowly increasing, also a potential signal of systemic toxicity.

On the other hand, I reminded him of how I'd already tried going off treatment in December 2016, after 22 months of nivolumab infusions as part of the clinical trial at Johns Hopkins. My disease-free status lasted 15 months before my tumors returned. While we agreed that was bad, we also agreed that the fact that I have had a complete response once I resumed treatment was a very good sign. Dr. Maughan allowed that it might be possible that, between the immunotherapy and the radiation treatments to zap the persistent tumor in my supraclavicular node, it may be possible that I have no more metastatic disease in my body. Maybe, I allowed. But probably not.

I've always assumed that even if immunotherapy wiped out the PD-L1 mediated mutation, some other mutation would assert itself and start growing. Mybe, said Dr. Maughan. But not necessarily. He said that more recent research has suggested that immunotherapy  can permanently change how a body responds to multiple types of tumor growth, not just those on the PD-1 pathway. The longer-term progression-free survival (PFS) rates of renal cell carcinoma patients and melanoma patients who have been on immunotherapy suggest that about 40% of patients have a long-term PFS. Immunotherapy was used on those cancers before it was used on bladder cancers, and the survival curves tend to taper out and flatten as the years progress. Maybe I could be one of those patients who have a long PFS after ending treatment and going on surveillance.

I asked whether he had heard from Dr. Apolo or Dr. Hahn on the question, and he said that he had not. I said that we'd probably all be together at GU ASCO next month, and we could talk more than. Dr. Maughan was delighted to hear that NIH was picking up the tab for me to attend ASCO, as well as having me fly out to DC in March for a patient advocate training meeting. We agreed to wait and see what the other members of my medical team thought about staying on treatment or suspending treatment and going on surveillance. I'm in no rush to make the decision.