An Update — This Week

1 minute read time.

Immunotherapy is confirmed for Tuesday.

That’s about as quickly as they could have started it given everything that’s happened over the last few weeks — the Gamma Knife, the seizure, the steroid reduction — and the fact that it’s happening this fast feels like a genuine win.

The plan is a double dose — nivolumab and ipilimumab together. The reason for the double dose, I’m told, is that I’m young enough and fit enough to handle it. I’ll take that. Smile

It will be administered via a drip over 60 to 90 minutes, every three weeks, for 12 weeks in total. After that, scans to see how things have progressed — or more accurately, how much things have shrunk.

There are potential side effects — quite a list of them if you read the full paperwork — but the most common experience is fatigue and flu-like symptoms. Most people get through it without anything more serious than that, and that’s what I’m hoping for.

The honest truth is I’ve been waiting for this moment since the diagnosis. The Gamma Knife dealt with the brain lesions. Now the immunotherapy goes after everything else — systematically, throughout the whole body, teaching my immune system to recognise and fight the melanoma.

Modern medicine is remarkable. And Tuesday can’t come soon enough

Ghhv
  • Hi  

      had that immunotherapy combination. You might find her blog useful 

    community.macmillan.org.uk/.../kidney-not

  • Hello!  I heard my name mentioned lol

    I had ipi-nivo.  It's interesting you've been advised 60-90 mins duration!  In my experience it was 2.5 hours.  There was always a wait for the chair, then a wait for the drugs to be delivered from the pharmacy.  At the start it's longer because you have to have a 30 min break after the ipi, before the nivo.  

    Side effects - I've not heard that flu symptoms are the most likely.  I was advised itching and sickness.  I had some itching at the start but after that lots of immune related adverse events which don't appear on the patient leaflet because they are not numerous enough.  

    I totally get where you are coming from "Tuesday can't come soon enough".  I felt exactly the same and my wait happened over Xmas 2021. We agreed the treatment plan on 21/12/2021. Then in Jan they had a backlog so I had to wait another week.  My mantra was "get the drugs in me NOW!".

    Good luck and keep us posted!  

  • Thanks for the info, I’ll let you know how it goes but will pack an extra book!