How do you cope with unexpected stage 4 melanoma diagnosis and side effects?

Receiving an unexpected stage 4 diagnosis is incredibly shocking, especially when there were no warning signs beforehand. Many community members have shared similar experiences with difficult side effects from immunotherapy, and connecting with others who understand this journey can provide valuable support and coping strategies during this challenging time.

Hi Marko, I'm so sorry you're going through this - what an absolute shock to get that kind of news from a routine shoulder X-ray. I'm dealing with similar challenges from immunotherapy side effects and wondering the same thing about how to cope with all of this when it hits so unexpectedly.

I really didn’t have any side effects to the immunotherapy but it has cause some inflammation on my liver so I am dealing with that so they postponed my treatment for the moment

HI MARKO our story is similar I had a growth on my head they removed it and found that it was Melanoma stage 4 it’s in my brain and moved throughout my body

I did the immenotheraphy but had to stop because of the side effects now I’m with out treatment any suggestions waiting is killing me lol

Have you gone to a major cancer center? Maybe you need a clinical trial or stem Cells or something new they have.

Specify your side effects and the treatment drugs you are being infused with. Nivolumab’s side effects are fairly tolerable, but Ipilimumab is more toxic and is offered for only a bit of a patient’s treatment. Opdualag is Nivo and another monoclonal antibody (two different meds). Can be effective but it too has has side effects. Itching and joint pain are not uncommon and you should be able to tolerate those, so long as immunotherapy is effectively halting tumor growth, with some prescribed skin creams and a few other meds for the poly arthritis. Inflammations of inner organs is more serious and that requires good discussion with your oncologist. Stay with it if it is effective and not truly damaging your inner organs. Can prolong your quality of life and instill optimism. Best to you.

Ken D. Not sure where you live but if relatively close you might call Hutchinson Cancer Care Clinic (part of UW University). Fred Hutch can deliver treatment options that even front line medical centers in big cities are unable to deliver. I suppose Anderson in Texas, Mayo, and Kettering offer the same. Keep at it. It’s worth being active to halt the progression. Every day without progression is a good day!