I've noticed a few concerns expressed recently about side effects from Nivolumab/Relatlimab so I thought I'd share my experience so far. I was diagnosed with Stage 3c melanoma on my scalp in Sep 2023. After the wide local excision and skin graft, it was discovered that the cancer had spread to two lymph nodes on my neck. I was advised that it was inoperable and offered a two-year course of immunotherapy of various drugs. I opted for the Opdualag (Nivolumab/Relatlimab) as this was a recently approved treatment which had good results from early reports. No significant side effects from the first three treatments then on the day after the fourth treatment started feeling very unwell with headaches, chest pain and nauseous vomiting. After a three day spell in hospital I was diagnosed with Adrenal Insufficiency and put on a lifelong course of cortisol replacement medication (Hydrocortisone) which seems to have solved that particular problem. I was able to resume the treatment and have now had my ninth cycle out of 26. Other than feeling a bit lethargic for a day or so after the treatment, I've had no other significant side effects and the subsequent CT scans have shown that the cancerous lymph nodes only neck have either reduced in size or are stable. The Oncologist assures me that the treatment is having the desired effect and this gives me hope for the future. All the specialist cancer nurses and doctors I have had contact with have been fantastic and very quick to respond to requests for advice. I feel blessed and very fortunate and know that I am in safe hands. Looking forward to the next 17 treatments with the same optimism as the first. As the Oncologist said to me when giving me the news of my diagnosis, "is your glass half full or half empty?" I quickly replied that I had always been a "half full" personality and I'm certain that this attitude has helped me enormously on my journey so far. My message, therefore, to all those on the same path is to "stay positive."
Hi Nimbara
Thanks very much for sharing your experience with Nivolumab/Relatlimab. I'm sure it will prove very useful for others who are having this treatment.
Wishing you all the best
Anne
Many thanks, Anne, for your kind words. I realise I’m one of the lucky ones so far as I’m not experiencing serious side effects. I just got on with my life and try to fill it with good experiences. xx
Hello Nimbara
Thank you so much for sharing your experience I am in the same boat, wide scalp excision - skin graft and then some months later a scan has revealed it’s spread to some lymph nodes in my body. So I’m at stage 4 - have just started Opdualag and am coming up to treatment number 3. The side effects have just kicked in with some upset stomach days, headaches, nausea .. and tiredness. So it was good to read that there is a way to manage those side effects.
i am definitely feeling positive, i just need to pace myself and try not to do too much.
it’s really good to read about someone who’s just a bit further down the line. Good luck with your treatment!
Hi stx, so glad to hear that my experiences have helped you. I’m looking forward to treatment number 12 on Wed - that’s nearly halfway. Still feeling good and now that the sun has been shining quite a bit the world seems a better place. I’m swimming twice a week, in a hydrotherapy pool, thanks to the local Cancer Care charity and doing a Gentle Exercise class weekly. I’m convinced that exercise is definitely beneficial. I get occasional fatigue then realise I need a rest day and limit myself to essentials for that day. Keep positive.
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