3 years on and I’m still here! I have passed the first significant immunotherapy milestone which is 2 years of treatment. I am no longer on treatment – just watch and wait scans.
My last scan in July 2024 was 23mm. It’s been that for months now so it was definitely the right decision to stop.
I live life now not thinking much about cancer, apart from when running and cycling and I can’t keep up with the others. I console myself with thoughts like “I bet I’m the only one here (parkrun) who has cancer”. But the pragmatist in my head responds with “actually, I bet I am not!! “.
We’ve gone for huge gaps between scans. I feel comfortable with this. I am so fed-up of traipsing into the Western, Edinburgh. When we are discussing the schedule, my oncologist offers me a range of 2-3 months, when he suggests the CT scan is appropriate, and I pick the latest one. In 2024 I’ve had scans on 20th Feb, 9th July then the next one is not until Jan 2025.
I am no longer in a heightened sense of anxiety about my cancer – probably because the treatment did its stuff and the outlook looks good. But I remind myself that new growth may occur at any time.
Nasal congestion has been a problem side effect since Sept 2022. The trial vaccine Modi-1 had a positive effect on how I felt and the side effects. But the congestion has gradually got less frequent. I can’t remember the last time I was fully blocked – Aug perhaps? The dry eyes have come back a little, though.
The next target is no immune related adverse events by Jan 25. That would be the 6 month marker after stopping treatment. The longer the timespan after stopping treatment and any adverse effects occurring, then better long term outcomes are indicated. The next target after that probably Nov 2027 which is the 5 year prognosis I was given and Summer 2027 when my daughter is due to graduate from uni.
I received a phone call check-in from the Trial this week. Although no longer on treatment I'm officially still under their care.
That’s all folks!
