How things change. When I started immunology, I thought it was forever. As I became more educated, I learned about the diminishing incremental benefits over time. Also, that for some cancers there was a 2 year time limit on immunotherapy. When I first heard about two years I was a bit anxious, because immunotherapy had become a security blanket to me. But gradually, the more I talked to onco M about it, and the more I read, I started to appreciate the rationale for the 2 years. Today, the repeated visits to hospital have become a burden, my treatment is a continued success, and I am in a completely different place.
Things came to a head in January. I was job hunting and some interviews clashed with hospital appointments. I sensed some disapproval from some NHS staff as I cancelled non-critical CT Scans to achieve an appropriate balance between life admin and the cancer rigmarole.
Then I was prescribed dermovate steroid cream for an itchy vulva. I read online that lichen sclerosis had a 4% chance of becoming vulva cancer and this brought the length of the immunotherapy treatment right into focus. It’s time to review when a cancer treatment raises the risk of a new primary cancer. The risks need to be proportionate. This was a game changer and I had reached a point where I needed to bounce my ideas off my oncologist.
My next meeting with my oncologist (S from here on) was on 20/02/2024. Spoiler alert: this discussion went exactly as I thought it would.
First of all, I wanted to know the optimum time for immunotherapy. I thought the first immunotherapy trial, Checkmate 214, was for 5 years. But S confirmed that some people were on it for 5 years and some for 2 years, because at the time the license was for 2 years. Many historical trials were for a 2 year period also. Although, you will see from the graphs from the outcomes that results stabilize after 2 years. There hasn’t been the research or the analytics into the optimum timeframe. Therefore 2 years has become a de facto period.
I also assumed that because my treatment was now a combination trial; modi-1 plus nivo, that I couldn’t stop the nivo and continue with the modi. This was confirmed.
My last discussion with S, he thought the modi vaccines were complete (after 9 months) and just nivo remained. But when I had a different view, he looked it up and confirmed they continued. Therefore, I concluded they didn’t know the optimum timeframe for the modi either. To be fair, it’s a phase 1 trial so that is not the objective. On this basis the initial trial timeframe was for fewer injections, and I’d had them all, it was logical to conclude I’d had the benefit from these as well. Oncologist nodded.
S was also able to advise that the low risk of vulva cancer following lichen sclerosis was even lower when the cause was a side effect of treatment.
The pubmed articles I read said best practice was to continue immunotherapy until a complete response or until the toxicity became too much. But neither applied to me as I’d had a good partial response and no impactful side effects. S clarified that stopping treatment after a complete response would be as soon as the response was confirmed, not after 2 years, unless by co-incidence the events did happen at the same time.
The suggested risk is that you might stop treatment and then the cancer returns soon afterwards. This is the reason usually stated for continuing treatment. I thought this might be for those whose response had not been as dramatic as mine, but my onco stamped on that one straight away! Anyone’s cancer can come back.
We discussed what we would do if/when it came back. My other oncologist thought tivozanib (TKI) would be a good one for me when I was having the interstitial nephritis. S was certain with this. Nivo has been a success for me. The approach on any return would be nivo plus axitinib or cabo. He reeled off a few more but I wasn’t as familiar with those names so missed them. I have never seen him quite so certain before. It was quite funny.
Finally, my main driver for stopping immuno would be to stop before I had an impactful immune event, like diabetes for example, which is for life. Although I am a bit cloudy on this because the benefits continue after treatment stops and therefore the side effects must potentially continue too. The insightful science from my onco was that the longer you can remain iRAE free after stopping treatment, then the more likely you are to not suffer new immune imbalances. 6 months was the suggested timeframe.
S added that my rationale was in exactly the right place and 2.5 years after starting treatment was a perfectly reasonable time to stop, and he would support my decision.
Back in Dec 2021, I thought treatment would stop because it hadn’t worked or for reasons beyond my control. It’s like night and day to see me making this informed decision based on current trends and approaches.
I’ve been arranging the start date for my new job. My current job has a 13 week notice period. The earliest I could start the new job would be the first week in June with treatment due the second week of June. I decided June as the last treatment date because 2.5 years felt right. However, I did subsequently realise I could stop in May so I didn’t have to explain my absence for June treatment to the new manager. In the end the start date is 17th June so everything fits in nicely. Yay!
It was treatment day today and a scheduled phone check-in with S. He found me in Ward 1 instead so the Decision was Delivered! I can’t wait to stop now! It’s a new start in June on many levels 
