How do I cope with stage 4 melanoma and find support who understands?

Welcome to this supportive community where many members truly understand the unique challenges that come with advanced melanoma, including the physical side effects of treatment and the complex emotions that arise throughout this journey. Finding others who can relate to both the medical aspects and the feeling of being seen as "strong" while still needing support can make a meaningful difference in navigating this experience.

I truly get what you’re going through. Exactly 4 years ago today I was diagnosed with stage four melanoma. It was in my lymph nodes and my bones, in my brain and of course it all seemed very overwhelming at the time. I ended up going through immunotherapy, radiation, and removal of my spleen, and I have now been complete remission, or NED, for almost 2 years. Stay as positive as you can and try not to let negative people influence your thoughts. And give yourself some grace for those dark days. Perfectly normal. It’s a crazy crazy mind trip and your body will go through changes, hopefully not too severe. I was really lucky in that I didn’t lose any hair and I didn’t get sick. I hope for you the same .It’s a tough place to be, but you can get past it.

Thank you, yea it’s been appointments here and there and haven’t had time to process anything really and now that I am done with radiation and I only have to do my treatments every three weeks, now it’s hitting me and I have told people that if they can’t stand in agreement with me and stay positive then I don’t want them around me. I can not fall into that trap of negativity and giving in to this cancer and let it beat me. I stand on Jeremiah 30:17 that God will restore my health and heal all my wounds. Now my oncologist is no longer at the cancer center and idk who is taking over my case and they haven’t made any appointments for my third treatment and have been calling them but it’s always the same thing, “we will have the scheduler contact you” when they would just make appointments for me without consulting me.

Hi Jacqueline, my name is Bill and I was diagnosed with metastatic melanoma of the right breast a couple years ago. I had surgery to remove the mass and 23 lymph nodes. 22 were clean one was not, then it spread to my T9 vertebrae and latest scan a spot on my 5th rib. I did one round of radiation with success and just started a second round. I have been on immunotherapy for almost two years now, they just switched me from Opdivo to Opdualag. I have been fortunate not to suffer too many side effects and I try to keep going but I do understand what you mean when your support system sees your strength and think all is normal forgetting what we are dealing with. I have a tremendous support system as well but it’s hard for those not living with this fear, stress and the unknown. This place has been great to be able to reach out to people experiencing all that we do. I hope your treatments are going well and will be thinking and praying for you

Thank you Bill I appreciate the response and I will have scans done again in June to see where the progress is at. I will say the mass in my left eye was putting pressure on it that it was causing so much redness to occur and now the blood shot redness is going away and the puffiness under my eye has gone down as well, so I know something is working and the pain I was having in my spine, I haven’t had it any more so I am keeping positive about that too. And yes I know what you mean about people who haven’t walked this walk wouldn’t understand. I just experience a lot of loss of appetite and being tired a lot but I push through it. I was told to make sure I get a lot of protein in so I drink Ensure when I don’t feel like eating to get my nutrients in and also eating foods to help me fight this cancer. Someone told me to go all natural but instead I rather use the wisdom God gave me and allow the doctors to help me and I have done research on what foods help fight cancer and eat those as well.

Did you have it on your spine as well? Mine was on my T9 vertebrae, the treatment has helped ease the pain and the first round of radiation helped shrink it. Just started another round of radiation for the spot on my rib so hoping that eases some of the pain as well. My appetite suffered as well, I lost about 25-30 pounds since this started but some of that is from me completely changing my diet. I do not eat sugar or high glycemic carbohydrates, stick with mostly proteins and veggies. Started taking supplements that are suppose to help fight cancer but who knows if it actually works but I figured it cannot hurt. I, like you, try to fight the fatigue and keep moving, some days are harder than others. We just have to keep the faith and keep fighting and it is nice to have a place like this where we can talk to people who understand the journey we are on. Wishing you well with your treatments , keep me posted on how you are doing.