Melignant melanoma stage 4 advanced

Hi I am sorry to hear about your diagnosis. It is a real shock to begin with but in my experience it does get easier to deal with. If you want read my profile. I know the double treatment doesn’t work for some but in my experience it helped me. I had joint pain,vitiligo on my arms and foot ( which hasn’t gone ) and a slight rash I then went onto Nivolumab and since October have finished treatment. I have regular scans and am waiting for the results at the moment. I do get anxious before the results and often ring the specialist nurses for my results before my appointment with the consultant. Then I know what to ask him.

I don’t think about the prognosis and have never asked in recent years. I try to enjoy each day and as retired I go away with my husband often on holiday. It has made me appreciate life and friends more.  I do have times when it gets to me and when first diagnosed I used to take my duvet downstairs at times and lie on the settee in the night.  I find talking to the specialist nurses with any concerns helps.  When I went for my first treatment I was so nervous I was sick and they had to wait a few hours beforeI could have the drugs. It does get easier and once treatment starts you get into a routine. .Listen to your body if you feel tired try to rest I was tired on the day of treatment then 2 days afterwards  

At the hospital take some water and something to read as you may have to wait especially on appointments you see the consultant first  Write down any questions before hand as if I didn’t I tended to forget something  Ask for written reports of appointments  Also the help line is invaluable and no question is too small to ask.

When I first started treatment I looked ill and my friends etc knew I wasn’t well but as time went on I looked much better and put on weight which I had lost and people then think you are fine  You may  look fine but mentally it can be hard  I tried talking to a councillor but it wasn’t for me  Luckily I have a very supportive husband and some best friends I can talk about my true feelings with .

Please feel free to ask any questions. I found this site invaluable and still read it    Take care .

night.

Hi Tipps,

Welcome to the team.

Can I ask where your melanoma has spread to? Did you know about the melanoma before or is this a new diagnoses? Do you know your BRAF status?

My partner (he’s 38) is also stage IV with 4 x brain mets from a primary detected in 2017. He has just finished the first 12 week phase of ipi/nivo. He had almost no side effects (just general fatigue) until 1 week before the 4th cycle (week 9) when he got bad diahorrea and assessed as Grade II colitis. Despite some steroids it persisted so they decided going ahead with the 4th wasn’t a great idea. Fortunately evidence shows that stopping treatment early due to adverse affects doesn’t negatively affect outcomes. Our oncologist said she had only had 1 patient who made it through all 4 cycles successfully & that colitis is often associated with better response. 

He’s feeling much much better now having a break in treatment. A brain MRI last week showed all of his brain lesions have reduced by at least 50% (he also had SRS so we hope it’s a combination of immuno/SRS which has helped)

Our oncologist won’t discuss prognosis (& we don’t ask) as melanoma is such a fast-progressing area with a huge amount of variables. There are new drugs (Opdualag) and therapies (TIL) in the works.
I work in a big cancer hospital and have come across Stage IV melanoma who were diagnosed >10 yrs ago, even before immunotherapy was widely available. 

Thinking about hypotheticals and worst-case scenarios is really exhausting and not overly helpful for anyone. 
It’s good news that you’re starting your treatment soon, it will go really fast! A Mediterranean diet is good idea & lots & lots of water. 

Sending good vibes 

Hi Tipps,

I just came across your post.

I was diagnosed with advanced stage 4 metastatic melanoma in December 2021. I had about 30 tumours spread throughout my body; lymph nodes, many organs and bone. The initial PET scan lit up like a Christmas tree which was strange because I had no real sense of it - no pain, no sickness, nothing but a small sensation in the chest.

I started double treatment of Ipi/Nivo almost immediately. The bad news was, I had almost no time to consider my options, the good news was I had almost no time to consider my options. 

I was told there were significant, permanent side effects to about 50% of the people. That sounded woeful but het, hey, I was starting immediately. I decided to focus on the 50% of people that didn't get the serious, permanent side effects. I asked the doctor what we know about that group. She told me "not much" but she did mention there was research showing a correlation between a healthy and robust microbiome and being on the right side of the side effects. Brilliant! Now I have something to work with.I had already been researching diet and the microbiome, but now I doubled down on everything. 

I made it through my four double doses of treatment. It wasn't too bad. I focused on doing what I could for the microbiome and doing whatever mindfulness practice to help me before, during and after each treatment. 

I went to emergency a few times but not for anything serious. It was just precautionary as that was part of my instructions - eg if your temp gets above a certain 38 degrees or you have 3 consecutive  loose bowel movements - nothing that I would otherwise have presented to a doctor, let alone emergency with. 

I continued with single dose of Nivolumab every 4 weeks. Not bad at all. Side effects were occasionally flu like pains in the legs and a covering of vitiligo over a fair bit of my body. That's it. Pretty workable.

The last scan showed that my 30 tumours had all but gone. I have a 3mm tumour remaining in my lung. That's it!

After consultation with my doctor, I have chosen to take a break from treatment. The break will last some time between 3 months and forever. It is all scan dependant. I continue to get scanned every 3 months (alternating between CT and PET). My next PET scan is in July so that will be the first real test. 

I understand this is likely all daunting at this point. My suggestion is to stay focused on what you can control (which is more than you think) and stay positive.

I hope this helps. Here for you.

Hi Tipps,

Thanks very much for sharing your situation. I hope you're doing well.

I feel an affinity. I was diagnosed with stage 4 metastatic melanoma a few weeks ago. I started my first double treatment of immunotherapy 2 weeks ago at Guys. I had no immediate bad reaction to the drugs. That was good! I also got a free strawberry yoghurt while having the IV drip. I wish I hadn't been so nervous about it. Everyone was really nice. I was very tired that night and the next day - mostly from the ginormous life drama of it all. Since then, I haven't had any puking, pooping or fever. I've had fatigue and a sore throat/chest. I feel uncertain about what Dose Number 2 will bring.

I found the 'incurable but treatable' label very, very challenging. I still find it difficult. It helped me to read the short text on the Macmillan webpage for 'Treatable but not Curable': https://www.macmillan.org.uk/treatable-but-not-curable-cancer. I am trying on the identity of 'living with cancer', or 'being a lifer'. 

Warm wishes,

Dots

Hi Dots and I'm sorry to hear of your very recent diagnosis of stage 4 melanoma.  It's a bit like a steam train hurtling along with the diagnosis, scans, blood tests, more scans then treatment - so well done you.  It certainly sounds like you've got the ground running as they say. 

Just a thought for you to chat with like minded people - there is a forum on here called 'Living with incurable cancer'  xx

Hi Tipps and welcome to the melanoma forum. I'm sorry to hear about your stage 4 recent diagnosis.  You may well feel bewildered by all the things going on right now. I think you are correct to assume that sadly once the disease has been found in an internal organ (IE; metastases) it becomes treatable but not curable. 

You may like to try another forum on here too called  'living with incurable cancer' to chat with people in a similar position to yourself.  

Take care x