Immunotherapy trial?

Hi , me again. 

Yes, I’m on an immunotherapy drug called Avelumab (trade name Bavencio) - but in combination with a targeted therapy drug (or Tyrosine Kinase Inhibitor) called Axitinib (trade name Inlyta). I wasn’t actually eligible to take part in official trials but apparently the drug companies had made a certain amount available to the NHS for a limited time and my medical team felt that I was a suitable candidate for this. 

I haven’t been on it all that long. I had my fourth session yesterday which completes my second cycle. (Two intravenous infusions equals one cycle, I’ve learned.) As far as the immunotherapy drug is concerned, I go to the hospital’s chemo suite every other Monday. The cannula is put in, I’m hooked up to the drip, given half an hour of saline first (plus paracetamol and antihistamine) then an hour of Avelumab, and finally another half an hour or so of saline to finish up. The intravenous antihistamine (Piriton) makes you go woozy, temporarily, but otherwise you can chat, read, have tea or coffee, no problem when you get used to the routine. (The other drug, Axitinib, is a small tablet, at home, every 12 hours.) 

Now: side effects. I did a lot of research before I started on these drugs, so I was very aware of what *might* happen as they hit my system. Perhaps too aware, as I sort of expected to get them all in the first week or two. After my first infusion, I was sent home with a small box of anti-nausea tablets and another small box of anti-diarrhoea tablets, so these effects were very much expected. In my case, though, six weeks later both boxes have remained unopened; and no bad headaches either, I’ve only needed to take a couple of paracetamol in all that time.

I don’t know if you might be on just an immunotherapy drug, or a combination similar to mine, but the potential side effects of each seem broadly similar. You *could* frighten yourself by reading up on the severest possible side effects (and your medical team will talk you through everything if you go ahead) but those are really very rare. Yesterday I had to report that I’d had a brief flare up of mouth sores the day before (which had since subsided) and they sent me home with some mouthwash stuff for that - again, so far, the box remains unopened, but it’s reassuring to have these things if needed. 

It may be that I have been unusually fortunate, so far, in having experienced almost no adverse effects at all - except some tiredness. If you scroll back through the list of thread titles here, you’ll find mention of Avelumab/Axitinib and also Pembrolizumab/Axitinib. (I assume that drug names ending in -mab are immunotherapy drugs, while -nib indicates TKIs.) Some of that will be me asking other people who are some way ahead of me what their experiences have been. Where they have had an issue or two, it seems to have been quickly resolved. Haven’t heard from them for a while, I hope that they are all doing well. 

You’d have regular blood tests, regular contact with your medical team. But the thing with it being every other week is that it makes quite a dent in the calendar :-) 

All the very best, 

-Mark 

, That’s very reassuring because my oncology nurse said that I would probably be offered combination therapy when Pazopanib stops working. I take what you say about a dent in the calendar. That was one of my concerns but apparently the results have been very promising so you have to balance that against the inconvenience.