How Do You Cope with Melanoma Treatment?

I have a new diagnosis also. I have had radiation on my head for seven spots have others had this also? How have the results been for this?

I'm stage four. I have had radiation on my brain for seven spots. I also have it in my body too. I had my third infusion and will have a mri and pet scan next month. I'm worried!

How did your initial MRI compare with the MRI right before radiation. This usually occurs so that the stereotactic radiation is precise. I’m assuming you had some immunotherapy by infusion before the MRI right before radiation. Read the notes. If the tumors showed shrinkage and not growth, then that should give you optimism for immunotherapy. It’s effective in 66% of patients. But does have side effects. Best wishes. RJD

When I had my second mri they found two more. I had radiation on all seven then went back four times for one that was near my optic nerve. I had one immune therapy before the radiation.

Sounds like the immunotherapy had not kicked in enough before radiation. You’ll get those four combo infusions and then you’ll know if radiation and infusions are slowing things down. I’m optimistic for you and although you are anxious about this, I hope you remain optimistic too. We can then celebrate in a few months when we see that immunotherapy works and radiation cleans up the rest. We can be satisfied that going through this gives us more time. (PS: I have stage 4 with frontal lobe lesion and small tumors on lung and lymph nodes nearby. MRI show significant shrinkage of frontal lobe lesion after three combo infusions. Thankful Immunotherapy is here for us. Keep the faith!)

I'm trying to stay positive I have many people praying for me. It's so hard when you have to tell people. My grandkids don't know yet I'm afraid to tell them. I am hoping and praying treatments are all working. I happy for you that treatments are helping you.

Initially, I decided to let only close friends and family members know. Then, little by little, opportunities came about to let others know. I also try to exude optimism, confidence and gratitude, especially around family. Trying to ease their anxieties and sadness. And I have found it to be satisfying to take steps to “get affairs in order,” especially planning to take care of my wife. There is some sadness, but I find it essential to converse with those close to me as I undergo this experience. It keeps us all close and “real”. As a caveat, it helps that I am 75, have lived a long, satisfying life, am generally content and humble, have chosen to hold onto hope without being unrealistic….And, take the oxycodone when the infusion side effects or cancer symptoms become way too painful. I don’t want to suffer needlessly and I dont want to make visitors uncomfortable or afraid to visit. This is just a new reality, living with metastatic melanoma. Your family cares deeply about you, keep enjoying their company and keep living happily. It’s summertime! Live for today and look forward to another spring and summer next year. You’re going to make it!

I'm very anxious and nervous for surgery tomorrow. I'm waking up all through the night worried about the what ifs, I'm sure everyone experiences.

I am trying to stay positive and the anxiety has gotten a little better. I do have my papers like POA, health directives etc. In order. I went last week to the funeral home that was the hardest. I'm alone my husband passed two years ago from lung cancer from AO. I have three girls three wonderful son in laws and five grandchildren. They have been so wonderful to me. I felt like I was just getting my feet under me again since my husband passing. I have many people praying for me. I have a great church family also. They anointed me with oil and prayed over me this morning. It brings comfort during extreme times. Staying positive for my family is hard but I know the Lord will take care of me and I have left things in his hands. I will pray for you also.

Marnie: with later stage Melanoma, I would think immunotherapy is a sure thing in your future. If so, embrace it because from everything I have learned it is our best bet. Everything else seems to be helpful and supportive. Whatever you will be undergoing, always be kind and gentle with yourself. You’re entering a new normal and finding ways to make yourself relaxed and comfortable is essential.

My last mri showed the spots on my brain were decreasing and NO new spots. I'm very happy with this news. The fatigue is hard it's stopping me from doing things that I love to do. Still doing the infusions every two weeks. Hoping it's working also.

My immunotherapy is going well. Some side effects. I've had two so far. Blood work is showing its doing it's thing. I have fatigue but I try to push myself. I have to take time when doing chores n I can't do extreme sports like kayaking it took me out and gave me really bad back pain. Doctor said just walk to juice up those joints. That's the worse part and by second one I've had to drink even more water and liquid IV which helped. No sugar which tastes like crap

Living with stage 4 melanoma, with the emphasis on “living”. Immunotherapy is one of our best friends for most of us, despite the side effects.

I agree I have talked to two people that are out ten years. Simply amazing. I get fatigued after infusions but rest when I can. Short of breath at times too. Hoping it doesn't turn into pneumonia again. The steroids are so hard on my stomach. They prescribed Prednisone for a month. I was so happy when it was over.

I was diagnosed with stage 4 metastatic melanoma on my back Feb 2023. Dr said it was too deep to surgically remove. At first, immunotherapy didn't work for me, so I had 5 rounds of radiation along with it. That did nothing. I started on chemo pills. The first set made the floor appear wavy and affected my vision. The second set of chemo pills gave me a "mild" case of Steven- Johnson syndrome. It was like I had the worst case of poison ivy and sunburn combined, from head to toe. Was in the hospital for 3 days. Months later, I started back on immunotherapy and the cancer started to shrink, finally! I am now in the maintenance phase: still receiving immunotherapy ( have a few more doses to go) and feeling so much better. I was prescribed numerous versions of opiods for the pain as they didn't work after a while or were no longer available. I felt like a drug addict. it took a while to wean myself from them, but I finally did. I still receive periodic PET scans, brain MRIs, and CT scans. Right now, my biggest issue is my immune system being in overdrive, causing my bones to ache, itchy skin and sensitivity to chlorine from the pool at the Y, where I love to swim and participate in aquatic exercise classes. I am grateful to all my family and friends who prayed for me during those awful times. I truly believe it was God's hand that saved me when nothing else was working. My best to all of you just starting on your journey. Don't give up! Drink as much water as you can, daily; and try to find something to occupy your mind, such as reading or a hobby or craft, and do it faithfully each day. I made over 50 hats at Christmas time last year and gave them all away. It took my mind off the pain and antsy feeling while I was weaning myself from opiods. 😊🙏🏻❤️

Thank you for sharing your experience with the community. It's completely natural to have a mix of emotions during this time - feeling scared initially, then finding some calm, and knowing that worry may come and go throughout the process. Many people in this community find that connecting with others who understand the journey helps them process these feelings and discover practical coping strategies. Whether it's finding ways to manage anxiety before appointments, staying organized with medical information, or simply having people to talk to who truly get it, there are many approaches that have helped others navigate treatment decisions and the emotions that come with them.