Hi All,
I haven’t posted for a while so wanted to check in on how my immunotherapy journey is progressing. It’s proving to be something of a rollercoaster ride and I feel the need to download and get a bit of support and advice!
I started on Nivo/Ipi in March. but had to switch to Nivo only after one infusion due to Covid and some emerging side effects - mostly stomach bloating. The latter settled down after I switched to Nivo supported by taking omeprazole, and I went through the April and May infusions with nothing much more than an occasional sore mouth.
I had my 4th infusion at the beginning of June and then a scan in mid June. The brilliant news was that it showed that I was responding, the existing mets in my lungs were shrinking and there was nothing new elsewhere.
But it also showed some inflammation in my gut, likely from immunotherapy toxicity. I wasn’t surprised as I’d noticed some symptoms just starting to reappear in the days leading up to the scan. But I’m wondering if there was something else contributing to these symptoms, as 11 days before the scan I'd had what we initially thought was a urine infection - it started the day after the 4th infusion - and they got me started straight away on a week’s antibiotics. The bloating began to reappear just after I finished the antibiotics.
The annoying thing is the lab test later showed no urine infection and the symptoms cleared up within a week, so I took the antibiotics unnecessarily. But a few weeks later - this Monday - I had another episode of symptoms (some pain and some blood in the pee for a few hours, followed by gradually easing bouts of urgent and frequent peeing in the following days). Again the urine test shows no sign of infection.
I’ve now spoken to my consultant and her view is that both the bloating and the urinary issues are down to immunotherapy toxicity. This week’s infusion has been cancelled and I’m now on some steroids - prednisolone - to dampen it down. I started them on Tuesday and despite a slight lessening in the intensity of the symptoms in those 2 days, the dose has been upped until Monday, when we’ll review again.
The real worry from today’s discussion though was the potential threat of my treatment being stopped altogether due to toxicity. I hadn’t thought for a moment that this was on the cards. At the most I thought we’d delay a while, and to be fair this is still on the table, but was framed rather worryingly as “we could try one more infusion to see if it was the antibiotics”.
I’m not overly happy with this despite the reassurances that immunotherapy is not about completing a course but having enough to retrain the immune system to destroy the melanoma, and is different for each individual. She says my immune system is already responding and I may not need any further treatment, and cited examples of patients only managing one infusion and still being there 7 years later. But this seems a hell of a leap back into finger-chewing uncertainty when I was expecting to continue with monthly infusions for the next 2 years or so.
I’ve also separately spoken to a male nurse at my GP surgery, as he’s been dealing with the urine tests, and he’s cautioned against the risk of “confirmatory bias” from the immunotherapy team, as in automatically attributing the urinary symptoms to immunotherapy. He’s suggesting that a urology referral might be considered, as the symptoms could be down to something else, either sinister (first signs of prostate or bladder cancer) or more prosaic (an enlarged prostate irritating my bladder).
When I raised this with my consultant she said my recent CT scan showed no evidence of problems in my bladder or prostate, but it did show that my prostate is slightly larger than is usual for a man of my age (51). This wasn’t a surprise as I’d had a few prostate issues over the years and have to manage an urgent need to pee in the colder weather. So there’s certainly form there.
So there we have it: back on the rollercoaster. In a few short weeks I’ve gone from the euphoria of getting a response at the first scan to the anxiety of facing the possibility of having my treatment stopped altogether.
I just hope that these symptoms settle and that my consultant doesn’t leap to any hasty decisions. She’s quite a cautious, black and white type of personality while I get the feeling from reading other people’s accounts they some of their consultants are far more flexible when it comes to treatment.
Thanks all - needed to get that out of my head.
