Stage IV metastatic melanoma

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

Although I don't have the experience you're looking for there are quite a few people in the group who are stage 4. Having done a quick search in the group, I thought you might be interested in this thread.

While you're waiting for replies, it would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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Hi

I’m also Stage 4, with cancer being detected in my lungs and liver about 20 months ago.

Since then, I’ve had the combined Ipilimumab/Nivolumab treatment, followed by Nivolumab, and I have about four months left of the two-year course of treatment.

My body has tolerated the treatment well, generally with minor side effects, although one has been significant - the failure of my adrenal glands. This requires life-long hydrocortisone tablets, but a these are a very small price to pay for the fact that the cancer is no longer evident in either my liver or lungs.

Over the last few months I’ve been raising money for the Melanoma Focus charity by covering 1,000 miles on foot/cycle between Oct last year and April this year. I’m now trying to cover a further 1,000 miles between May and Sep this year. If successful, that’ll be 2,000 miles in a year. Hopefully not too shabby for a Stage 4 cancer patient!

All the best for the future and please feel free to ask any further questions.

Thanks for posting, Emo_Bham.

You seem to be doing well on the immunotherapy -- my biggest problem is a lack of energy and breathing problems whenever I exert myself. You are obviously a lot younger than I am -- and carry on with the physical activities!

I too am on hydrocortisone tablets for the rest of my life due to the failure of my adrenal glands.

I know it's difficult but have you been given any prognosis? My Oncologist won't, obviously, give any commitment but his Registrar has told me that after two years, depending on the condition of the liver, treatment of Nivolumab may be continued for a while -- dependant on other physical conditions of the other organs!

Good luck!

Hi,

I'm 64 - 65 in six week's time.

I've not had any prognosis and I suspect I won't. My oncologist gave me a grim prognosis if I didn't have the immunotherapy, however I'm not expecting any update due to the nature of this disease. 

I'll let you know if I do hear anything.

My oncologist has also suggested that the treatment may extend beyond two years, however I'm not sure if I'd want to extend the treatment due to the potential side effects. I'll have to make my mind up later this year.

All the best.

I don't know if I'll be offered treatment over the 2-year 'norm' but, at the moment, I'm of the mind I'll not take it if offered and let nature take it's course!

I'm in my second year of the side-effects and I think that'll do me.

Keep on going!