Two years ago I was diagnosed with stage 4 RCC on 24/11/2021. What’s happened this year?
Not a lot! Treatment has continued and the primary tumour continues to shrink. The latest size is 23mm which is an OK outcome from an initial baseline of 59mm.
I started an early drugs trial in June 2023 called ModiFY. It’s Modi-1 injections acting on T-cells. It’s not having any short term benefit on tumour size, but that doesn’t mean it’s not bringing any other longer term benefit.
Regarding side effects of the nivolumab, both the dry mouth and dry eyes are now insignificant. However, the nasal congestion has been constant all year. The next step is an endoscopy due March 2024 (15 month waiting list). The confirmation letter that I was in a queue arrived 10 months after my referral. It does state however, that it is a routine appointment so I may use this to respond to my travel insurance questions more appropriately.
Since this all began, I have never realized I felt sub-standard, only retrospectively. Right now, I really do feel normal again, running aside.
I also no longer feel I am going to die prematurely. I now expect to reach target 1 (youngest’s graduation in 2027) and target 2 (age 60) in 2029. I have had thoughts about reaching 70 in 2039. But they remain just that, thoughts . . . . . . and I immediately reign them in.
I’ve shared these targets before. But deep down, once I became aware of the no evidence of disease (NED) concept, secretly this became the goal. Shhhhh!
I now know what I want, treatment-wise, going forwards. It’s clear to me that the current Nivo programme and the current rate of decline over time, won’t get me to NED. When the modi-1 trial ends in June 2025, I'd like to stop all treatment and start a watch-and-wait regime of every 5 months, then 7 or 11 months. I love prime numbers. 
I really want to avoid month X being “cancer month” which could happen with 6 and 12 monthly check-ins. It’s just another coping “game” of mine to stay one step ahead of the cancer. After that it will be a continuing to live with the cancer.
Oh and for the record, I feel indestructible. :-o
