Immunotherapy for dummies

I realise that I harp on and on about immunotherapy, assuming that anyone reading this should understand what I’m talking about. Nobody wants, or needs, a lecture… so here it is in a nutshell.

Immunotherapy is a form of cancer treatment that enables your own immune system to fight cancer. Here are some bullet points outlining the important bits:

  • There are different immunotherapies, that are used to treat different cancers. These include melanoma, kidney, bladder, head and neck cancers, non-Hodgkins lymphoma, and non-small-cell lung cancer. There are currently thousands of clinical trials taking place to find different combinations of immunotherapy drugs that might work for other cancers.
  • Immunotherapy can be given intravenously, orally or topically (as a cream applied directly on to the skin). My current immunotherapy drug, Nivolumab, is given intravenously every 4 weeks at the hospital. This is done as an outpatient, meaning I go to hospital for only a few hours during the day as opposed to staying overnight. A nurse cannulates me (administers a drip) in alternating hands each time, and then infuses the drug through a pump over the course of a couple of hours.
  • You can be on immunotherapy treatment for varying amounts of time – my treatment plan states that I will take Nivolumab every 4 weeks, for probably around 2 years.
  • Immunotherapy can cause MANY and varied side effects. These are very different to chemotherapy or radiotherapy side effects. Immunotherapy works, in essence, by taking the brakes off your immune system. This can lead to your immune system attacking healthy parts of the body, as well as unhealthy parts. Some of the most common side effects with the drugs I have been taking include: fatigue, fever, breathlessness, cough, rash, colitis, muscle aches, headaches, nausea. Amongst many others – these drugs can cause the body to potentially attack itself at any time during treatment, and for up to 18 months after treatment has finished.
  • As immunotherapy drugs don’t kill cancer (or rapidly reproducing) cells directly, side effects don’t generally include hair loss, extreme nausea, mouth ulcers, or other symptoms typically associated with chemotherapy. I have been asked this a lot!
  • Side effects need to be managed quickly, as they can lead to severe and potentially fatal reactions resulting from the overstimulation of the immune system. This is normally done using steroids which dampen down your immune response.
  • You can tell if immunotherapy is working for you with different tests done by your doctors. These include blood tests, and imaging scans done at regular intervals.
  • Some people respond very well to immunotherapy, and others don’t respond at all. This is something I have found difficult to come to terms with, on all sorts of levels. Researchers and scientists don’t know much about why some patients do and some don’t respond. I think at the moment this split is roughly 50/50.
  • For patients that do respond, the outcome can be incredibly positive. It’s difficult to put stats on this as the treatments are so new (my combination immunotherapy drugs, Ipilimumab and Nivolumab, were approved by the NHS in 2018). I now know people who were involved with initial trials and who have been treatment free for 4 years with no cancer and no relapses. People who have complete responses to immunotherapy are more likely to remain in remission which is so exciting for the cancer community. This means that all of a sudden, hard to treat, stage 4 diagnosis’ are in some cases being cured (!!)
  • Immunotherapy is developing at an incredible speed – an interesting timeline of milestones, major discoveries and treatment approvals can be found at the link below (it is taken from the American equivalent of Cancer Research UK, so FDA approvals aren’t exactly in line with NICE approvals for reference. It is still worth a look!) https://www.cancerresearch.org/immunotherapy/timeline-of-progress
  • Other research taking place includes finding ways to predict responses, finding solutions to resistance, and also how to reduce side effects.