Immunotherapy & Covid-19: Choices

I am so sorry for your situation. It is a hard to make the right decision.I had ipi and Nivolumab about two years ago now but I didn’t have serious side effects and now on Nivolumab only ( when I can get it see recent post) If you have bad side effects you don’t want to end up in hospital now incase you become infected with the virus. Nivolumab for me gave me even fewer side effects.  Itching which I still have now especially at night and slight joint ache and tiredness after the infusion. Ipi gave me vitiligo on my arms,chest and thighs and more tiredness but was lucky not to get serious side effects which you know people can get. 

It is a very hard choice. Could you talk to your specialist nurse or even take the consultants informed advise. I just hope people are still keeping their distances and hopefully soon the worst of this dreadful time will be over .I will be thinking about you and hope others may have a better answer than me 

Take care 

Hi Tarilan, it’s not easy making choices is it, I think you have it so right though that it does come down to risk appetite. If you went for just the Nivolumab, how often would you get that, Is it every 4 weeks or 2 weeks? 

I suppose if it was me making the decision I’d be taking into account how advanced my cancer was, and what age and weigh up what I was most concerned about. I have in the past watched many melanoma patient conference videos where consultants have talked through ipi/nivo statistics for hospitalisation as 50%, but you don’t know where you would be, and how Pembro or nivo on its own is lower, except that those statistics won’t take into account a swop of treatment. The stats also show a difference in how well the double works, but because I’ve been on Pembro and became no evidence of disease, I have looked at the stats and concluded that there was only a slight drop in the stats of how well a single therapy works. 

I’m not a medic, and don’t feel I should say which I’d go for, but I think, because I’ve done this myself, that now you’ve put the question on here you probably know which you want to go for. You’ve probably all ready had the dual versus single choice when you started treatment, and you will know how easy that decision was for you, if it was a close call, then I can imagine that this choice with the added risk will be easier to make.

Good luck with your decision, remember you call always call the Macmillan support line to talk it through, but I think just like your consultant that the decision will be yours. It will take a bit longer to get through than in the past but the number is 0808 808 0000.

Good luck.

Thanks to both of you. It is difficult and personal circumstances apply. I’m 51, still reasonably fit, and have a single met in each lung. I have 2 children age 11 & 8.

I’m a naturally cautious person, but there’s a lyric in a Tom Russell song that feels relevant, “There’s a time for sober introspection, and there’s a time to set the wild dogs loose”.

I always felt that when the Dab Tram stopped working - and 2.5 years wasn’t a bad run - it would be time to set those wild dogs loose and go for the dual immunotherapy option. I never could reconcile the thought of going down the single agent route and the severity of anger and regret I would feel if I didn’t get a response. 

Looking at people’s stories on these pages, I formed the view that getting at least 2 infusions in would still give a good chance of a response. In my head that’s felt like the minimum requirement, even though some have had good results with just one.

I’m already getting the side effects so something’s happening in my body. While we can’t be sure, this could be a sign that I’m already responding. But would going to Nivo alone sustain that? My Consultant says that 3 year survival - that holy grail point for immunotherapy - only shows a 5% difference between single & dual, and that as I’ve already had the 1st dose of dual, that might shave the difference down to 3%.

It’s tempting, really tempting when you look at the C-19 risk, but I have this feeling that I need that 2nd dual infusion to really charge up the response. If I was making the decision to go for the 3rd infusion it’d be easier to switch to single, as that was always a possible pathway, but it just feels too early. Again it comes down to whether I get live with the regret if taking the cautious option didn’t work.

I was talking this through with my brother, a no nonsense plumber. His view was that this essentially boiled down to comparing what will happen (the melanoma will kill you if you don’t stop it with immunotherapy, and your best chance is hitting it hard and early) v what might happen (hospitalisation through side effects, contracting C-19, succumbing to C-19).

That puts it in sharp relief, though of course the single route from here might be all that’s needed!

I think I probably also need to further understand the C-19 risk, the protections the hospital will have in place and the likelihood of fatality if I do contract it.

Hi Tarilan, I can see your thinking that it would have been much easier to make that decision one more  dose in. You’ve identified that the 3 to 5 % is one point to consider, and how you’d feel about that.

You've said your fit and not elderly so feel able to continue the double dose. The drs have made the suggestion of steroids so that you could have a telephone consultation and start on steroids if you needed to. I haven’t had a bad reaction so I can’t give you personal experience of what that was like. 

I can imagine you are considering any extra risk for your household, from attending the hospital and of course if your household were affected you might never know if it was due to going to the hospital or due to something else. 

So having ruled out option 1, do you have to attend the hospital less frequently for option 3 than option 2? and does that make a difference? Is a compromise to avoid ending up in hospital such a bad thing when other are successful on a single treatment, and you could either never need to have the riskier IPI if you get to no evidence of disease, or you could go back onto it when when things are safer. 

Melanoma can kill, and can be incurable but with a durable response, C-19 can kill quicker, be very unpleasant, or be mild and could be passed to others in the household. Some geographical areas seem a lot more affected by it than others, which is separate to how you as a person might be affected with small mets to the lungs.

It’s lots of things to consider, I have a dice somewhere it says YES, NO, MAYBE. At times I’ve rolled it a bit like flipping a coin, when it lands on the wrong answer for you, you know it. Sometimes your heart wants one thing but your head something else. Sometimes you can ask the consultant what decision they feel is best for you, and they might gave a hint, but only if you tell them what is more important to you, to have the very best chance of surviving melanoma, or to have the best chance of avoiding C-19 for you (and your family), or a compromise. Sometimes it best to sleep on it and you wake up knowing what decision is best for you. 

I’m a naturally cautious person to but sometimes I get this urge to be brave, and it’s sorting out what you are most scared of and are you making a head or heart decision, are you moving away from something or towards something if that makes sense.

Please let us know what you decide on, and I’ll update later next week on what’s happening for me, but if I can help with just listening while you sort things out I am here not all the time but I am here every day.

Hi Tarilan and lgrgdg90

I wondered if this article would be of interest.

https://www.theguardian.com/commentisfree/2020/mar/24/which-cancer-patients-should-be-continuing-chemotherapy-during-the-coronavirus