Treatment decisions stage 4 Melanoma of lung (also posted in melanoma forum)

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Hi Everyone,

my husband has been given a choice between nivolumab + ipilimumab OR nivolumab + relatlimab immunotherapy. He only has the cancer now in the right lung after a wedge resection of the left. No other organs/body parts affected. No lung symptoms at all.

We have done a LOT of research into the effectiveness and side effects of each and found that (from the papers we have seen) they have a similar effectiveness up to 3 years (there don't seem to be any figures beyond that for relatlimab combination as it hasn't been around long enough to say) and that nivolumab + relatlimab have quite a lot less potential side effects.

My husband is quite sensitive so we're quite concerned about side effects. But also he is not your average 74 year old and generally very fit and healthy otherwise. He is a runner and cyclist and still working full time.

Is anyone in here willing to share how you're getting on with either of these combinations of treatments and in particular nivolumab + relatlimab just so we can put a human perspective on it?

Many thanks
Squeak

  • Hi  

    I replied to your post in the melanoma forum but noticed your post here hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Hello Squeak,

    I was diagnosed June 2023 with stage 4 melanoma. I have numerous lesions. I can only give you my perspective of nivolumab/ipilimumab. I had 4 rounds of this and I’ve just finished 8 monthly treatments of nivolumab. I was considered otherwise fit & healthy prior to starting treatment.
    I coped well with side effects and the tumours have reduced, and disappeared in some organs. The only issue I have had, is with pre existing back pain and the team are deciding whether to continue with my monthly immunotherapy as planned or opt for something else. They are comparing previous and most recent scans to determine the best way forward.

    I’ve never considered myself fit and healthy exactly, as I’m overweight and have had spinal problems prior to my diagnosis. The fact your husband keeps fit and is still working is such a bonus!

    Your husband and other relatives sound blessed to have you around to help. Look after yourself xx

  • Hello Hevalan,

    thanks for that. I am so pleased you're doing so well! I read in a few places that people carrying a bit of weight do in fact do better.

    He chose the Relanivo in the end. Partly because of his age and increased risk of problems. Partly because only a 20% chance of serious side effects as apposed to 50% with ipinivo. Partly because it has similar results at 3 years as the ipinivo which sounds promising.

    He's lucky to have the choice because the hospital weren't offering relanivo 12 months ago. But the oncologist said if he had been over 75 he would have been reluctant to offer it at all.

    He's 2 months off his 75th. He also had a prolapsed disc and had keyhole surgery last year for that.

    He had his first treatment last week and says he doen't feel any different so finger crossed. Still working, running, cycling. Laughing He's not going to give up easily!

    He's having 4 rounds of the combination, a 6 week break, then on to just nivo. They said they might not know if it's working for 6 or 7 months.

    Trying to take care of myself too! Just helping youngest son to move out to a new area and job and getting the house on the market just in case he gets to a point he can't work.

    I hope things are stil going well for you. You've been through a lot but I am inspired by your story and updates.

    Thanks very much for sharing.