Advanced Melanoma

Hi Spain and a very warm welcome to the Community but I am sorry to hear about your diagnosis.

Navigating a cancer journey can be such a stressful and challenging time but getting support from people who have walked the ‘exact same' cancer journey can help you a lot. (I have a completely different cancer).

This New to Community area is like our reception desk where we look to try and direct you to the best part of the Community for you to get support.

The Community is actually divided into dedicated Support Groups (Discussion Rooms)…… but I do see that you have already joined our dedicated Melanoma support group.

This is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

The best way to connect in with the group click on the link below…….

         Melanoma

……. and when the group page opens you can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post]or [+] in the top right of the group page.

You can copy and paste the text from this post into your new post.

The Macmillan Support Line is open for anyone would like to get in touch from outside of the UK they can contact us 7 days a week 8am-8pm (UK time) on:

+44 207 0912230  email or live webchat

This service provides cancer information, practical information, emotional support or just a listening ear.

Do get back to me if you need further help navigating the community.

Hi Dave

Sorry to hear you need to be here, but everyone on here is so supportive and caring and are always prepared to listen.  They have been a marvellous support to me since I was diagnosed with Squamous Cell Carcinoma (cancer in my tonsil and neck lymph gland.) I go in for my operation on my throat tomorrow.

I too had two Malignant Melanomas (albeit 30 years ago) and had to have them removed, along with mass muscle tissue, but thankfully, I am still here and treatments have moved on tremendously in the last 30 years since mine, the survival rates now I believe are extremely high.  Hold on to that thought and I will be thinking of you.  Just keep talking on here and you will find great comfort from just talking to people who know exactly what you are going through.

Hugs

Hazel x

Thank you for taking the time to respond, best of luck tomorrow

Thank you

Hi Dave Spain, welcome

my husband has just been diagnosed with the same in his lungs. This is a great place to reach out. I have had a lot of support already and used the helpline. The support is amazing and sadly very much needed. It's good to talk to people who understand what you're going through.

I am in the Melanoma forum too. There's also a space called The Room should you need a rant.

Do you know what treament you are being offered yet? My husband will be starting immunotherapy in a couple of weeks time.

Squeak

Hello, I hope you and your husband are positive, I think it's important, if difficult.

I started my immunotherapy of pembrozlizumab, I have my 3rd treatment tomorow, which I have every 3 weeks, what is your husband on?

I've felt genuinely OK, a bit tired now and again, my muscles have stiffened up a lot so can not exercise as I was, hopefully I will get this addressed tomorow.

I am in Spain and the support mechanism is not what it is in the UK, I think there is more support there, use it if you need to.

Yes I think the support here is quite good once you get to the oncology team. 

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. But they say there will be other bits of cancer floating around that can't be picked up yet.

We have done a LOT of research into the effectiveness and side effects of each and found that (from the papers we have seen and what the oncologist said) 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.

There's a great podcast series on the melanoma.org.uk website about dealing with side effects and when to flag things us. really worth a listen.

I hope you get sorted soon.

2 weeks until my husband starts his.

Hope your both good, my melanoma spread to my liver, bones and pelvic, I became very still and immobile gradually getting worse over the last week, they havecstopped my pembrolizumab and I've got a rheumoligist appointment today, I did have a PMR diagnosis 2 years ago, the treatment could have triggered this off again, however, I think I will be offered another treatment similar to what your husbands will be. I think I will be given steroids before my treatment is re started. This is what happens at times and you have to adjust if you have any side effects.