On 24th November 2021 my Urology consultant advised me I had metastatic kidney cancer. A kidney tumour which had spread to the lungs, It couldn’t be cured. It was however, treatable.
I thought it opportune to mark the event with a summary. Also to record how I am feeling about it now.
I’ve been on ipilimumab / nivolumab for 11 months and it has the cancer under control. The kidney mass has shrunk by 20% and some of the lung metastases are now undetectable. My kidney function (eGFR) has unfortunately taken a hit. Before treatment it was a healthy >60 but now it is 48. I don’t feel any adverse effect from this.
Before diagnosis and during the investigations I had felt a bit bleugh. I was frequently cold, lacking energy, and my appetite took a hit. Today, I am still frequently cold. I sleep in a fleece! But I really do feel “normal” again. I have lost just under a stone. Most importantly I am back to my normal activities of running and cycling albeit a tad slower. But who cares about the pace with my medical history?!
I also experienced an immune related adverse event. At one time I was within a day of the treatment being permanently withdrawn. This was a difficult time and the cause of the reduced kidney function.
One year ago I asked about my prognosis and I was told 5 years. Sh1t! That’s when my youngest finishes University. Today, I know that these estimates are just a guess based on statistics and old treatments. Also, generic advice like this doesn’t take into account your body and how you will respond to treatment. We now know my body has responded well, but equally I know from the immune related adverse event, it’s a knife-edge and it can change at any point.
Target 1 remains to see my youngest graduate from Strathclyde University in 2027. I’m quite confident I’ll meet this target now. This is my evaluation, I’ve not discussed it with my oncologist. I don't think it's fair to ask my onco to predict the future. Target 2 is to get to 60. But I also have a long term goal for the immunotherapy Overall Survival record. Why not?! At age 52 on diagnosis, the potential is there. Plus, it spices up life a little huh?! I deliberately didn’t use the j*****y word there! 
I am still working out appropriate lifestyle choices. At one point I intended stopping work. But now I am finding working three days a week a welcome distraction. Plus part of me also thinks that I shouldn’t let cancer rob me of what I would have done in my 50s. I am finding the lifestyle choice quite challenging. We spend all our lives working so we don’t have to work. But now I am thinking - what does “no work” actually look like? One thing I have learned recently is that I can’t stand being in the house sitting around. Equally I love "me time" and having the house to myself.
A final mention about the side effects of the treatment. I’ve already noted the immune related adverse event (interstitial nephritis) caused by “too good a reaction” to the drugs. What a bu**er eh?! Some mild itching at the start and now a dry mouth. Apart from being a regular at hospitals, I really don’t feel ill, and I’m definitely intending on hanging around for a long while yet.
