Stage 4 - can anyone share their positive experiences

Hi Alibobs.

I'm also Stage 4, following an initial melanoma diagnosis in late 2020, followed by excision of the lesion, then WLE, SLNB and a radical neck dissection to remove 50 lymph nodes from my neck.

My cancer had also metastasized to my liver and lungs, however following combined Ipilimumab/Nivolumab therapy followed by Nivolumab on its own, the cancer is not detectable in my liver or lungs.

I've had just the one side-effect so far - my adrenal glands have packed up (seems my immune system has really kicked up a level and attacked them as well as the cancer!) but two small steroid tablets a day keep me going.

I feel great - just over half-way through a seven-month, 1,000 mile challenge to raise funds for Melanoma Focus (their website, as well as Macmillan's, has great information resources) and I'm thoroughly enjoying life at the moment with my family.  

Please try to be as positive as you can be - get out into the fresh air and look at the world around you - particularly now that nature is starting to wake up again after its winter slumbers!  I find nature is so much more impressive since my diagnosis - I really don't know why!

All the best - feel free to ask any questions.

Hi, thank you for taking the time to reply and I'm so happy for you that you're doing so well! Your experience has definitely given me something positive to think about. Can I ask if they still class it as stage 4 now its not in your lungs and liver anymore? Are you still having some treatment?

Most days I'm doing well at being positive, I'd say 5 or 6 days out of 7. Carrying on working and having to be normal so the kids don't worry definitely helps. 

Spring is my favourite time of year so that is already making me feel happier that it's starting to get lighter, it's almost like the winter was the bad time and now things are going to get brighter in every sense of the word. That's the plan anyway! 

Hi yes read my profile as it saves me writing it out again but after being diagnosed with stage 4 in 2017 I am touch wood clear of cancer. I wish you well It is hard with all the treatment and I had a roller coaster of emotions but no2 just try to enjoy everyday an£ as you say Spring helps.

Excuse the mistakes. I didn’t check it before sending.

Hi,

Yes, still Stage 4. My oncologist suggested once Stage 4, always Stage 4, whatever the status of the cancer.

I'm still having treatment - overall 24 months timescale from commencement, so I should be finishing around September this year.

My situation is a bit different as I'm 64 and I decided to retire when I received the diagnosis. Best decision I could have made!

Look after yourself and feel free to come back with any further queries. 

All the best.

Thank you for replying, I've read your profile and what a great positive story, thank you so much for sharing. Hope your good health continues for a long time to come. 

Ah okay, that's interesting to know. Hope your good health and success with the treatment continues. 

Hi. I’m 45 and have two young boys age 8 and 10. I understand what you might be feeling... I was diagnosed with metastatic melanoma in June last year. I’ve had counselling via macmillan which has really helped me adjust to the diagnosis and all the emotion about my children. Immunotherapy made me unwell at first but now I’m on one rather than drugs two it’s fine. My cancer is not detectable via ct scan now which is great. It’s still hard to get my head around this as a life long thing though, although most days I can focus on other things. The hardest are the days leading up to treatment or a scan as my mind starts catastrophising. However in general I appreciate moments so much more and am enjoying life much more than I ever did before this diagnosis so I am in a way grateful. I am not trying to do anything with it positive or negative I’m just trying to live each day as authentically as I can with a focus on my children and family more than work. I miss my old work attitude but I’m sure I will find a way to re experience it differently. I’ve made a few changes which are yet to come to fruition so it’s still a work in progress. Thank you for posting. I came online today to connect with other people adjusting to this and being able to read your (and other responders) experiences thoughts and feelings has been really helpful. 

Hi, thank you so much for your reply. It's great to hear from someone a similar age and with similar family circumstances. As I'm sure is the same with you my children are my only thought in all of this, I keep thinking that they can't lose their Mum when they're still only children and if the worst has to happen it can't be until they're adults, the thought of their childhood being ruined by this happening or by losing me is just too much to cope with some days.

I've just had my second immunotherapy session of the double dose and still feeling fit and well at the moment so hoping that continues. That does help with being able to think positive about it as I feel like there's nothing wrong with me and my kids can see that I'm feeling well so don't need to worry about me which helps. 

I feel like you completely described how I was feeling when you mentioned how worried you get around a treatment or scan. I find a lot of days I can carry on as normal, even though it's always at the back of mind, but then when my blood test and treatment day comes around I start feeling panicky again and thinking all the worst case scenarios. It's nice to know I'm not the only one that does that!

Can I ask you a question about your treatment, you mentioned that the scan now shows that the cancer isn't detectable, which is amazing, but you're still having immunotherapy? Do they just carry on with the treatment regardless of what the scans show? I haven't got that far yet so not sure of what happens!

Thank you again for posting. 

Hi - apologies for jumping onto this message, however my oncologist explained that my treatment would last for two years, irrespective of the evidence of cancer or not (my scans have been clear for over 12 months now, with a further 8 months or so to go).

I understand if you finish treatment early there could be a problem starting treatment again in the future if the cancer reoccurs due to funding rules, etc.

Hope this helps.