Ongoing melanoma treatment

Hi Brox.

I had the Ipi/Nivo treatment and then went straight onto the Nivo as I was Stage 4 and I wanted anything that they could give me at the time!

I've been very lucky in terms of side effects, and other than my adrenal glands giving up the ghost, any side effects have been minimal.

I'm certainly no expert, however, anecdotally I suspect many for the severe side effects come from the combined therapy (apologies if this is incorrect  - it's just a suspicion I have) and therefore the risk of side effects going forwards might be tolerable?

It's a personal decision for all of us. I've taken the view that I want to maximise the scientific weapons, even if there are side effects.

Your doctor will gove you the best advice hopefully,  but I thought I'd give you my viewpoint.

All the best for the future, whatever your decision. 

I'm a Stage IV and went through Ipilumab and Nivolumab and have been on just Nivolumab since July 2022. They extended my 3-week treatments to 4 weekly due to my side-effects -- and also they've given me two longer breaks: one of 8 weeks and one of 4 weeks -- to give me relief. I'm told you can have up to a 12-week 'holiday' with no effect (not sure about the 'no effect')!

I understand your uncertainty but I think you should see how it goes with the side-effects before you make a decision.

Personally, I frequently wonder whether my side-effects are worth it but weigh up the alternative of what it would be like had I not had the treatment and how much the tumours on my lungs, liver, and adrenal glands would have spread! At the moment (after18 months' treatment) my tumours have been contained and there is no growth/spread (to date!); therefore, maybe it's been worth the side-effects? I don't know.

On the other hand, I'm told many patients don't experience bad side-effects! You may very well be lucky.

The time seems to have gone quickly and you do learn to put up -- or live with -- with the aching, pain, mobility restrictions, itching, etc.!

I'm continuing with the treatment as I know I've gone through 18 months' treatment and have only 6 months (6 treatments) to go -- and then I'll find out if the two years was worth it -- or not! 

You are probably much younger than me (I'm 79) so will have much more to live for -- carry on and see how you go! There are so many places to go to, so many things to do!

Good luck!

Hi Brox, My experience has been quite similar to Emo_Bham who has replied to you.  Nivolumab alone seems much more benign than the combined treatment, and as I was stage 4/metastatic i was grateful for any treatment going. I'm 2 years in now and things are pretty good - scans show no changes. Good luck whatever you decide.

Hello Ian567. I too am stage IV and have been on Nivolumab alone now (after 4 sessions of Ipolumab/Nivolumab). I have seen some spread during the last 15 months but there has been no significant change now for 6 months.

I was told that treatment would only continue for 2 years. Were you told this?

It's a pretty safe bet that you're much younger than me (79) and I wonder if it's an age factor that treatment is only given for 2 years. I know there can be a toxicity build-up in the liver in some cases. 

Anyway, good luck and hopefully your "no change" continues!

Many thanks to all of you who have taken the time to respond to my initial post.   

I did a lot of thinking and had discussions with various people, including with my doctor.  It was a very difficult decision to make but I finally decided to follow my doctors' advice to not have any further immunotherapy at this stage. 

As outlined in my initial post my doctor (and his colleagues) believe that the initial treatment has got me to a good place and further treatment will not improve that position.  For that reason my doctor did not believe it was worth risking potential side effects when he did not believe there was any medical benefit. 

We are all different and have to make our own decisions, and it is a relief that I have made mine after a lot of thought.

I have the comfort of quarterly scans so if anything does develop we will know and be able to respond quickly.   

Best wishes to everyone

Hello Barbican, I was originally told "2 years or until the money runs out", which I took to be 2 years max, but it now seems that funding is available and some people have been on treatment well beyond 2 years, although my oncologist says there are not enough results in to say which is the best option beyond 2 years - hence my question.  Best wishes to you for the future.