My life on immunotherapy
After 9 months on Nivolumab it’s difficult to imagine a time before our fortnightly trips to London from Hereford, or even a time in the future without them.
In 2013 I had a course of High-dose Interleukin 2 (IL2) at The Christie in Manchester, which didn’t appear to be effective. It was a huge relief in some ways to not have to go back for more as it was one of the hardest things I’ve ever done. The following year was spent ‘on surveillance’ while both recovering from the treatment and wondering what the next course of action would be. Although the lung mets were very small they were still increasing in volume by about 50% every three months. The mathematics of progression was fairly depressing. During my Facing Up 2 Kidney Cancer ride around the UK mainland coast on my motorbike raising awareness and money for research into earlier diagnosis of kidney cancer (www.facingup2kidneycancer.org) the disease briefly paused. The roller coaster of emotions was at the top of the hill for all of us. It was jokingly suggested by our GP that I needed to carry on riding around the coast to effect a cure. It reminded me of Superman circumnavigating the globe at high speed, in the first movie, to save Louis Lane’s life, do you remember that? Hope is in short supply with kidney cancer and it seemed an entirely reasonable suggestion!
The pause in progression was short lived and soon settled back into its previous 50% rate of growth mode. By this time I had become aware of Nivolumab and the oncologist and I decided that it offered the best way forward for me. Thanks to the wonderful support from the Kidney Cancer Support Network (www.kcsn.org.uk) we learned that the drug was originally only available under the Early Access to Medicines Scheme. The Royal Free Hospital in London were incredibly supportive in getting me on the programme, and after being briefed about the potential horrors off the drug, and being given fifty pages of potential side effects to read the treatment commenced. Because of the nature of Nivolumab’s mode of action it can trigger potentially fatal auto immune reactions. The first four infusions we preceded by doses of anti-histamine and steroids. The anti-histamine sent me to sleep and the other patients in the treatment room were subjected to an hour of my thunderous snoring. By the time we got home to Hereford the steroids had sent me hyper and I was playing loud music in the bath at midnight, which was very unpopular with the rest of the family! All this seemed to do was result in a monumental headache. After a few treatments with this, and some research on www.smartpatients.com to see how others were being treated while on this drug, we realised that the anti-histamine and steroids weren’t necessary and were probably prescribed because they are standard in chemotherapy.Since then the treatment has consisted solely of Nivo. So what are the side effects? For me feeling ‘fluey’ with an almost permanent feeling of an upper respiratory infection, and an acne type rash on my shoulders and back probably sum up the initial and ongoing side-effects, generally worst in the first week after treatment and improving in the second week. Dry and itchy skin and sometimes a sore mouth fluctuates from week to week with no apparent pattern. The side effects have changed during the 9 months of the treatment and for the last six weeks, and currently, the big problem is a huge, deep seated fatigue. I’m still working full time but I have to try and rest whenever possible. Life has definitely shrunk, and I can’t tolerate alcohol anymore at all, or ride my motorbike any substantial distance, but it’s still tolerable and clearly preferable to the alternative!
In early June, three months into my immunotherapy treatment Alison Fielding, another kidney cancer patient, and I were invited to attend the NICE panel on behalf of the Kidney Cancer Support Network (KCSN), as expert patient witnesses, in an attempt to persuade the panel that Nivolumab should be made available to kidney cancer patients. The KCSN was the only kidney cancer organisation representing patients at this Health Technology Appraisal for Nivolumab. I enthused about the low toxicity of the drug. I felt it best not to mention that I was feeling rubbish on the day, although I was back at work the following day as promised! After an appeal later in the year, for which Sarah and I both submitted further evidence, NICE finally granted access as a second line drug for renal cell carcinoma.
After three months of treatment the first scan results were awaited with huge nervousness. Stable disease was the given outcome, which confusingly translated to a small amount of tumour growth (4%). Not exactly the result I wanted but not bad. Three months after that the next CT scans showed spectacular shrinkage off up to 60% of some of the lung mets, and some shrinkage of the mediastinal lymph nodes, although this good news was slightly tempered by the discovery of a couple of possible brain mets. As I write this, I’m contemplating the results of Monday’s scan. I feel like Schrödinger’s Cat (this particular cat was famously alive and dead at the same time). The CT scan results from last week showed further spectacular shrinkage of the majority of the lung mets, but also some growth in others.
So what does the future hold? We are seeing the Professor this week, however according to the medical profession we are now in largely uncharted territory. During clinical trials most patients would have ceased treatment by 9 months, the stage I am currently at, due to either toxicity or ineffectiveness. It now looks likely that my treatment will simply continue beyond the promised 12 months. The next scan In another three months will be very telling, if there is still growth in some mets I will push to have ablation considered as an option. As an agronomist I know only too well that controlling diseases (or weeds) is best achieved using treatments with different modes of action.
In the States I believe that there are a few patients who have been on the drug for 2 or more years, with the advice that they remain on the drug either until it becomes too toxic, or there is disease progression. There may also be conversations ahead about potentially reducing the dose and/or frequency of treatment, but I’m not sure there is any data to back this up, and this needs to be scientifically proven, rather than just decided purely on cost grounds. One wonders if any of these options might reduce the side effects whilst maintaining efficacy.
Cure is not a word used in kidney cancer treatment, and good as Nivolumab clearly is, this is probably an expectation too far. However the limited trial results do, in a very few cases, give a hint of some long-term survival before death. That will do for me at the moment!
Copyright Jon Birchall 10 Jan 2017