Stage 4 melanoma with multiple brain and lung metastasis.

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Hi everyone,

Wish I was joining a different kind of forum but I'm guessing so do you all.

I am 39 years old and have recently been diagnosed with stage 4 melanoma cancer with multiple brain and lung metastasis. Obviously this was a shock and hearing the words we can "only try to prolong your life" was hard to digest.

I had a 2.9mm nodular malignant melanoma removed from my upper back in 2018. I had wide local excision and sentinel node biopsy which came back negative. Unfortunately 3 years on during a routine head scan for my eye check the brain tumours were found and the rest followed.

I've just finished 5 sessions of full brain radiotherapy this week and I start my immunotherapy on the 8th of June where I will be having Opdivo(Nivolumab) and Yervoy(lpilimumab).

I have always been a positive person and that is not going to change. I have to believe that miracles can happen. I am the proud dad of 7 year old twin boy's. My boy's were born prematurely on 24weeks gestation, they had a horrendous start to life spending many months in intensive care. They're both now non-verbal autistic with severe learning difficulties but they're amazing and my absolute reason to keep going. I can't even think of not being here for them and leaving my wife to bring them up alone.

Everybody's journey is different but I hope you're all having good news with your own personal battles. Don't lose hope because as my boy's have shown me, miracles can and do happen.

All the best,

Steve

FormerMember over 4 years ago

Hi Steve, welcome to the forum, I do hope a miracle happens for you, and your positive attitude wins the day, at least we know some people on immunotherapy get that complete response or stability it’s something to hope for. I loved hearing about your lovely boys, wishing you lots of luck for your June start date.

Steve82 over 4 years ago in reply to FormerMember

Hi KT,

Thanks for your support.

I hope you're doing well and are staying as positive as possible although I know it's hard at times.

Take care,

Steve

Sailor2 over 4 years ago

Hi Steve,

Your attitude will be a great asset to you, as I'm sure it has been your entire life.

I was designated stage IV myself some time ago, and then eventually advised that my next six months would likely be my last. I was given Ippi/Nivo in a 2 hour transfusion immunotherapy at that time. Unfortunately I was only able to have one dose as the side effects were terrible and my doctors withdrew the treatment. Happily they were able to treat me for the side effects and I suffered no permanent damage.

The Ippi/Nivo has still stopped my melanoma in its tracks, having reduced one of my tumours dramatically, one has gone completely and rendered the "bits" in my lung inactive or static. I'm now just over a year past my "sell by date" and on a three monthly scans watch and wait. One dose has already given me 18 months and may give me more. I just had scans this week, so I will get the results in mid June.

Obviously we are all different, so are our immune systems & reactions to these miracle drugs, but I wanted to share this with you. Amazing things really do happen, even with stage IV melanoma.

Take care,

Don't wait for your ship to come in, swim out and find it!

Steve82 over 4 years ago in reply to Sailor2

Hi Sailor2,

Thanks for your response.

It's great that you've battled the odds against you and you've had success.

I hope your scan results come back with some more amazing news.

My hair just dropped out today which was expected after the radiotherapy.

One of the hard things for me to take which might seem irrelevant is the fact I've been told I can't drive any more.

It's something that is important in my life with having disabled twin boy's and also for my job but I guess it's something I'll need to get used to.

You look after yourself and please bring back some good news once you have your results.

Steve

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