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.

Hi Jacqueline, just wanted to reach out and see how you are doing? Hope your treatments are going well. Had to delay mine due to my liver counts went crazy, doc thinks it’s a side effect from the Opdivo so on a high dose of Prednisone to bring them back down before I start the Opdualag. Hate missing treatments because makes me feel kind of exposed in a way, like there is nothing in there fighting it. Anyway, just wanted to see how you were feeling and hope all is going well.

Good afternoon and that is crazy that happened to me too my liver levels were too high so they postpone my treatments I am on Opdivo and Kervoy so they have me on pernisone too to help with inflammation. From what the doctor said it means treatment is working it’s just overly working in my body right now and needs my body to rest I guess. I have to go now for weekly blood work and they did an ultrasound and the mass on my liver has increased not sure if it’s due to the inflammation or what is going on with that.

Hi Jacqueline, just wanted to check in and see how you are doing? Hope your treatments are going well. I was able to restart my treatments this past Friday. My liver counts finally came back down with the Prednisone and they are keeping me on a maintenance dose of 20 mg per day to keep my counts in check while taking the Opdualag. My Brain MRI came back good but my next Per Scan will be coming up soon which will give a clearer picture of what’s going on. Anyway, hope all is well with you

Hi Jackie and bill. My name is Beverly. Dx with stage 3 melanoma 10 mo. Ago. New axillary node developed on keytruda. Now going to try opdivo and yervoy combo x3 doses before checking scan and surgery in 6 weeks Interested in side effects you experienced on the combo drug ,,,

Hi Beverly, nice to meet you except wish it wasn’t under these circumstances. I was diagnosed with metastatic melanoma of my right breast, stage 4 about two years ago. Underwent surgery and have been in treatment ever since. I was on Opdivo for a long time but recently they switched me to Opdualag. With the Opdivo I was very fortunate to experience little to no side effects. The only issues I had was early on was rashes and skin irritation which made me extremely itchy all the time. The dermatologist prescribed some cream that helped plus it seemed to stop after a few months. I felt a little tired the first couple days after a treatment but for the most part I was lucky. I wish you the best and hope all goes well . I have found this place to be a huge help, being able to connect with people experiencing what we are has been great. Reach out any time.

Thank you William. Best wishes for continued health

Good evening to you both and Bill I still haven’t had my treatments my liver levels have gone down but they are still high and from what I am told the mass on my liver grew in size but not sure if it is due to the inflammation on my liver or the mass itself so I am still on the steroids and also I take two blood pressure medications and I was told that those two one can effect the liver and the other my potassium levels to be low which I am dealing with that as well, so I am taking potassium pills and eating liver friendly foods and things to help my potassium as well and it’s seems to not be working because of the blood pressure medications. So I go for a brain MRI and PET scan to see if the cancer has shrunk any and depending on that the doctor will decided what the next step will be.

Do they have on Prednisone? They started me on 80 mg a day which was a nightmare, couldn’t sleep, always felt like I just drank a six pack of Red Bulls, I hated it. It did bring my liver counts down but it took a little over a month or so and then they slowly reduced the steroids and now I am on a maintenance dose of 20 mg a day while resume treatment. On Friday I got my first round of the Opdualag, it wasn’t bad, had a little nausea for a day or two but feel ok now. Let us know how your scans go, will be thinking about you and praying all goes well

They have me on 10mg on prednisone which I take three a day and yes I will reach out and let you know and thank you. My doctor is considering chemo if my liver levels can’t or won’t come down and he is pushing me to do clinical trials but that means travel time and I can’t do that right now. It’s a little frustrating but I am placing it in God’s hands and surrendering it all to Him.

Well will keep you in my thoughts and prayers. Have they tried any radiation? I had good results with the spot on my T9 vertebrae and they did a second round with the spot on my rib bone but haven’t gotten a Pet Scan yet to find out if it shrunk at all. This whole experience is frustrating and hard and quite frankly it sucks but it helps to have people who understand what we are going through . Stay positive and always here if need to vent.