Newly Diagnosed Stage 4 Metastatic Melanoma

Hi Kano and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

That must have come as a horrible surprise to find that your melanoma has now spread to your lungs and liver and I can completely understand your wish to do everything you can.

I don't have any personal experience to draw on with the treatment of stage 4 melanoma, but there are quite a few people in the group who are at the same stage as you and also lots of people who are on the combination of ipi/nivo, which is short for ipilimumab and nivolumab.

While you're waiting for replies from other stage 4 melanoma patients or people having ipi/nivo, you could use the search bar or icon, depending on what type of device you're using, to look for others at a similar stage or on a similar treatment plan.

If you feel that talking to someone to explore your options would be helpful, then the Macmillan Support Line is available every day from 8am to 8pm. There are specialised nurses available along with advisors who could guide you as to whether to use your terminal illness cover. It's free to call them on 0808 808 0000.

x

Hi just wanted to say I do know how you feel as my melanoma spread from my groin yo my lung,spine and near my kidney. If you want read my profile. After targeted treatment for 7 months then 4 doses of ipi and nivo then a few years of Just Nivolumab I am at present cancer free. It was difficult at times but I felt I had more side effects with the targeted drugs.I do wish you well and you will get through this by taking each treatment at a time. Resting when your body feels like it. I managed to continue my walking throughout it but tended to be tired on the day of treatment and 2 days later. I think I had mild symptoms compared with some others. I ate a lot of veg and fruit and stayed away from probiotics as my consultant said you need a wide variety of gut bacteria . Take each step at a time and enjoy doing things you like doing. I wish you well 

Hi Kano, sorry to hear about your diagnosis.  It is best to keep a positive thought process on this, cancer can be beaten and is every day but staying positive give the body a fighting chance so keep the good thoughts. I to was diagnosed with stage 4 melanoma in Jan this year from a 1A mole removed 4 years ago. I tried the immunotherapy but it didn't agree with me so have been on Dab & Tram for the last 6 week. I've just had a scan and found that my cancer has nearly all gone and the drugs should clear the rest up. So don't get to down your family will support you and you can be stronger together. It will make you stronger. All the best Greg

Hello Greg and sorry to piggyback on this post (sorry to you too, Kano) but I wanted to message you about your post. At the end of March I was diagnosed totally out of the blue with stage 4 melanoma, it having spread to various organs including lungs and liver. I was put on dam and tram a fortnight or so later, so I guess I've been on them for about six weeks now. 

Anyway at the time I was diagnosed I was told it was "incurable". I also asked how long I had and whilst the doctors couldn't tell me, I asked them if people in this situation can live for five years (not sure why I went for five) and I was told "a very small number do" so obviously I was reeling and felt entirely despondent.

Then a couple of weeks later I saw the hospital's (cancer?) dermatologist, who was looking for the source. Anyway she mentioned that she has had a client with stage 4 melanoma who has been with us for over 10 years, and he's in his seventies (and is now on dam and trab).

Anyway I guess the point of my message was that your cancer is nearly all gone and you've only been on drugs for I imagine five months? This has given me immense hope. The natural pessimist in me keeps hearing one of the first oncologist's words "incurable" and "very small number". Anyway thank you for the hope.

https://forum.melanoma.org/forums/topic/who-is-ned-for-5-or-more-years/

Plenty of folks on here doing just fine for well over 5 years!!

Keep in mind that immunotherapy has only really been around for 10 years max & so much has improved in the last 5 years with treatment timing and optimisation.

I wouldn’t dwell too much on what your doctor has said about prognosis. Everyone’s journey is different, there’s no point trying to guess what yours will be.

(My partner is also stage IV with brain mets so I have read every bit of information out there & I just choose to focus on the success stories because I know he is going to be one of those).

Stay strong

xxx

Thank you everyone, still get my head around all this. I'm grateful for your help. Roll on Tuesday, fights on