New to the group and inspired by the togetherness of the group. Lovely to see there's support.

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Hi everyone,

I have been muddled up with this site on my phone and have messaged in wrong groups so I apologise if you've read this before.

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 had 5 sessions of full brain radiotherapy and have currently had one round of immunotherapy Opdivo(Nivolumab) and Yervoy(lpilimumab), my next round is on the 28th of June.

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.

Has any body had some positive news lately with immunotherapy?

All the best,

Steve

The strongest people are not those who show strength in front of us, but those who win battles we know nothing about.

KTatHome over 3 years ago in reply to anndanv

Hi annette, oncologist has started the ball rolling on enquiries for the TILs trial as it takes a while, and he’s been given a provisional yes but not a green light. I might be eligible but there’s questions about wether my fluctuations in my nodes might make it not necessarily the best solution as if they decrease again they wouldn’t be able to harvest enough white cells. I’m still on Pembro and will have another scan in August before a change is considered, which might not be the trial, as I could be rechallenged with something more conventional, but he wanted to get as many options as possible for me. So He rattled my cage a bit early I think, but it’s a bit disconcerting that each Scan there’s some reduction but more increases than decreases, it’s a fine line between carry on or make a change I suppose, but I’m happy he’s not pulling the plug on Pembro yet and getting some options in place.

Take care KT

anndanv over 3 years ago in reply to KTatHome

Hi KT, At least it sounds as if your consultant is exploring all avenues, which is what you want his to do before a decision is made. We are just back from a 2 week holiday (see Three Good Things) and this week I have CT, MRI, Ultrasound of Liver and Bloods to have. Talk about thrown into things! I've hardly had time to take a breath and it's back on the scanxiety rollercoaster! Not that I worry but my husband gets stressed out a bit! Appointment for results 26 August!

Hi Steve, How are you doing now things have settled a bit? I hope all is good with you!

Love Annette x

Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!

Steve82 over 3 years ago in reply to KTatHome

Hi KT,

I've been a bit allover the place the last 2 weeks, spent a couple days in hospital and lost over a stone in weight.

Constantly burning up and had nasty breakout of rashes. I'm picking up now after being given some steroids but I've had to have my treatment cancelled for a week or so until I recover.

Hopefully back on it soon.

I'm a bit delayed with my replies so apologies if I ever miss anybody out.

Take care,

Steve

Elliekate over 3 years ago in reply to Steve82

A message has just popped up to say I reported something but I didn't so if anyone on this thread gets a message that they have been reported it was something I caught in error as I don't actually know how to report anything

Rainieday over 3 years ago in reply to Steve82

Hi Steve,

Hope that things have settled down a bit for you now and you're feeling better. All good wishes, RD

Ulls over 3 years ago in reply to Elliekate

Hi Ellie Kate as the reply button is next to the flag to moderator could be you pressed by accident oooops

KTatHome over 3 years ago in reply to Steve82

Hi Steve, I’m glad you’re picking up now, I’m sorry you’ve had a terrible 2 weeks. Fingers crossed for you getting on track soon.

Take care KT

Tony73 over 3 years ago in reply to Steve82

Sending you good thoughts Steve. its comforting to know that we are here together and can talk about our situation.

anndanv over 3 years ago in reply to Steve82

Hi Steve, I hope you are feeling a lot better and things have calmed down for you! I wonder has your treatment started back yet?

Love Annette x

Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!

Steve82 over 3 years ago in reply to KTatHome

Hi KT,

I've been in an out of hospital again after my 3rd round of immunotherapy, I've been in a week now it's not doing me good. Constant diarrhoea and sickness and they're going to do test on my bowels. Unfortunately they're going to stop my treatment going forward before it attacks my organs.

Gutted but I'm sure they're be something else that they're going to try.

Hope you're having some luck.

Steve