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Stage 3 Melanoma

jask
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Hi.

I'm caring for a person who has been diagnosed with stage 3 melanoma and would like to hear of people's experiences with immunotherapy. Here's what has happened so far....

He had a malignant mole remove last year. It was a nodal one and 3mm so there did a wide area excision. From then on he had a 3-monthly skin check and ultrasound. In Aug this year he discovered another dodgy mole, it was .7mm and was removed. Between them deciding if another WAE was needed, it was discovered that he had a slightly swollen lymph node in his armpit. A biopsy was done and melanoma found. He went in 3 weeks ago and had them all removed.

Yesterday we met with the oncologist, who said melanoma had been found in 2 out of 15 nodes. His CTI scan and MRI found no other evidence of spread. They have therefore recommended immunotherapy, specifically Nivolumab (Opdivo), which he was would have once a month. It's that or continue with surveillance, i.e. skin check, ultrasound, and CTI every 3 months.

We are going back in early Jan to discuss further and give them a decision.

The side effects of this treatment have been explained and the decision now is whether to take it or continue with surveillance. He is very concerned about the potential side effects and how it will impact his life. He's worried he won't be able to work and pay bills, mortgage, etc... He's asking why he should take the risk and it affect the quality of his life, and whether it's better just to wait and see what happens, and in the meantime just enjoy life.

I'm being as supportive as I can but I can't make this decision for him. I trying to get as much information for him so he can decide. Any advice, guidance, sharing of your own experiences would be a tremendous help.

Also, he has been taking golden paste, RSO/FECO (thc paste) and CBD oil for about a month. He's wondering whether this will suffice if he doesn't go for the immunotherapy.

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    Hi jask,

    I'm sorry you are caring for someone who has been diagnosed Stage 3  with melanoma. The immunotherapy treatment has only recently been offered to Stage 3 patients who are newly diagnosed. It is routinely given to Stage 4 patients but it has now been passed by NICE to be used as an adjuvant treatment to try & stop the spread of the disease. It has previously been used in drug trials for some Stage 3 patients & has shown good results so that is why it has been passed for newly diagnosed Stage 3 patients now.

    I can't, myself, comment on the side effects as I haven't had the treatment although I know a few who have. Personally, I don't believe in the use of alternative therapies like CBD oil etc - I've suffered from this disease for 22 years & I've read enough for me to decide that it is of no help with cancer but that's my opinion. All I can say is, should he decide to accept the immunotherapy treatment he must tell his consultant of the alternatives he is taking if he wants to continue with them as they may react with the immunotherapy drug.

    I was diagnosed Stage 3 9 years ago & if immunotherapy was around then, knowing what I know now, I would seriously consider taking it. Although I am currently NED (no evidence of disease) and I have the 'watch & wait approach' (surveillance checks) I would love to have been given the chance to help my chances of survival. I was diagnosed Stage 1 in 1996 so, having returned & spread after a long period of time, I never feel 'out of the woods'!

    I hope you get enough information to help him make an informed decision & please let us know how you get on,

    Best wishes,

    Angie

  • Offline in reply to AngieT

    Thank you Angie.

    He has decided to proceed with immunotherapy and the first treatment is booked for 15th Feb. He is very concerned about potential side effects, and of course how successful the treatment will be. And also about having to cut out or at least drastically reduce his beer intake!

    I'm encouraging him to join some sort of support group, as speaking with people going through the same thing may be beneficial, but it's a struggle. I don't know if it's a bloke thing but I will persist.

    We have informed the medical staff that he's been taking CBD oil and THC paste, and they said they don't have enough evidence to comment so would err on the side of caution and suggest he doesn't take either.

    I'm glad to hear you're currently NED, having beein diagnosed 9 years ago. I know every case is different, but I will pass this info on to him as it will be something positive to focus on.

    Will report back regularly on how treatment is progressing.

  • Offline in reply to jask

    My husband has recently had his second infusion of immunotherapy and in his case has not had any side effects, is still working and playing 5 aside football. It has also not affected his beer intake. Good luck x

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    Hi 

    I'm 32 and just today been diagnosed, the melanoma has spread to my lymph nodes in my neck and I will be having them removed July 10 - from there they will decide if I required immunotherapy. 

    I'm really scared of the journey I'm about to start and reallly anxious. 

    k x

  • Offline in reply to kayleigh_heth

    Hi Kayleigh,

     

    I'm so sorry to hear you have melanoma & it's spread. Mine spread to the nodes in my groin & pelvis & I had them removed. I haven't had immunotherapy because I was diagnosed before it was made available to Stage 3 patients (18 months ago). However, with surgery alone I've managed to still be here, melanoma free, 11 years later so the immunotherapy gives you an even better chance of ensuring you have no further spread in the future. The surgery isn't a walk in the park but you will be fine.

     

    I will send you a friend request so we can chat if you think it will be helpful.

     

    Angie x

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    Hi there!

    I have exactly similar case,

    Being diagnosed almost a month ago with stage 4 melanoma;

    I am being treated at a hospital in London and I feel the team is incredible, feeling very grateful for that.

    Had my first inmunotherapy treatment on the 24th of December and yes your body definitely feels it but everybody reacts different, do not focus on the million side effects, just be faithful and trust.

    I hope it all goes well, any question please ask!

    We are all here to fight for this,

    Claudia

  • Offline in reply to jask

    Hi Jask, I hope the person you have been caring for is doing ok. Just wanted to say in case it's useful to you or others, I had stage 4 melanoma diagnosed in November 2019 and started on immunotherapy (ipilimumab and nivolumab together then nivolumab on its own for a year now). I had some side effects at the beginning but not since being on the single drug. And it has helped my tumours decrease in size slightly or remain stable, and no new tumour growth so far. So I'm really glad to be on it.

    Also I didn't think I would still be here now, so even though I am still devastated to have this at age 57 now I wouldn't really have believed I could have a basically pain and symptom free year ahead of me at that point. It is hard living between 3 monthly scans as I have been told there is no other treatment if this one fails. However I try as others have said to live in the present, have tried to learn many tools etc for coping. All the best. Tess.

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