How I ended up on crutches (simplified).
My cancer is treated with an immunotherapy drug rather than chemotherapy - preferred to chemo as chemo will not work on my disease.
Immunotherapy drugs are administered like chemo into the blood stream intravenously every three weeks and supported with TKI inhibitor drugs taken orally daily as part of the cancer treatment regime - tailored to my complex needs and particular disease.
Immunotherapy is designed to amplify the immune system - supercharging it if you will. By design immunotherapy assists the immune systems to seek and destroy rogue cancer cells and programmed to remember their genetic makeup thus preventing future metastases forming new tumours. Immunotherapy is used when the cancer has travelled to other parts of the body away from the primary source - in my case the primary Is the kidney and although I had it removed, I have metastatic kidney cancer.
An amplified immune system can also 'unusually' turn against the host (me) causing worrying side affects. In this case my amplified immune system started to attack the soft tissues and tendons within and around my joints - inducing inflammatory arthritis. The attack started in my ankle, then went to my neck and both knees - it began to cripple me, the pain was extraordinary.
When we recognised something was happening, I was immediately admitted into hospital for observation and to gain control of the attack and stop it from causing irreversible damage. We used a non-steroid drug designed to dampen the immune system without compromising the treatment. Using a steroid based product would have been disastrous as steroids and immunotherapy don’t marry well!
After a week of round the clock care we managed to gain control of the pain and the attack - but as a result I am left with extremely weakened with very sensitive joints - hence the need for crutches. Rehabilitation and light training should take a couple of months if the damage has been minimal.
I plan yoga and light strengthening to get moving again. Small painful steps but positive steps forward non the less.
My team are planning to ‘re challenge’ me with immunotherapy (restart my treatment) in 10 days’ time - giving my body a rest and chance to heal. So, in a simplified nutshell this is what happened to me.
Thank you to my amazing team of nurses at The Marsden and Prof Larkin who fixed me up and got me back on my feet to fight another a day. I am forever grateful.