Melanoma: What are your tips about immunotherapy (Keytruda)?

@williamfh I had stage 3 melanoma on my shoulder in 2015. Surgery was successful and lymph nodes were removed. This was a year after my breast cancer and radiation.
A little over 5 years later melanoma metastasized in my lung and is inoperable. I started on keytruda in 2021 and will be on it for life. Within the first several treatments no sign of the tumor so there is no doubt Keytruda is a miracle drug.

My mother is 96 years old. She was diagnosed with melanoma on the back of her leg just above her ankle in 2024 at the age of 94. Identified as stage 3. When the surgeon went to remove the one spot, she actually identified another and both were melanoma: therefore, declaring stage 3. After surgery Mom began immunotherapy Opdivo. She had two infusions 28 days apart. After the second infusion, she began to break out in a rash. The rash was unbelievable as it eventually covered her entire body. The rash spots began as blisters and progressed into sores scabbing over. If you have ever had a fever blister, it was like fever blisters all over her. It took almost 8 months to get the rash under control. Obviously, she had no more infusions. The manufacturer came back and said the reason for the severe reaction was her age. Here we are now 2 years later and the melanoma is back. Based on my research it appears to be Amelanotic Melanoma as the dermatologist did not suspect it to be melanoma, 3 places biopsied and all 3 melanoma. She will see a surgeon this week for removal, but the oncologist is recommending that she try Keytruda after this surgery. Based on previous reaction with Opdivo, and the major side affect listed for Keytruda, does anyone know if we should expect the same reaction with Keytruda? The rash before was way worse than the surgery and grafting. She was a real trooper, but everyone medically seemed very perplexed at the side affect. For those with Keytruda rash, how bad was it?

My mother is 96 years old. She was diagnosed with melanoma on the back of her leg just above her ankle in 2024 at the age of 94. Identified as stage 3. When the surgeon went to remove the one spot, she actually identified another and both were melanoma: therefore, declaring stage 3. After surgery Mom began immunotherapy Opdivo. She had two infusions 28 days apart. After the second infusion, she began to break out in a rash. The rash was unbelievable as it eventually covered her entire body. The rash spots began as blisters and progressed into sores scabbing over. If you have ever had a fever blister, it was like fever blisters all over her. It took almost 8 months to get the rash under control. Obviously, she had no more infusions. The manufacturer came back and said the reason for the severe reaction was her age. Here we are now 2 years later and the melanoma is back. Based on my research it appears to be Amelanotic Melanoma as the dermatologist did not suspect it to be melanoma, 3 places biopsied and all 3 melanoma. She will see a surgeon this week for removal, but the oncologist is recommending that she try Keytruda after this surgery. Based on previous reaction with Opdivo, and the major side affect listed for Keytruda, does anyone know if we should expect the same reaction with Keytruda? The rash before was way worse than the surgery and grafting. She was a real trooper, but everyone medically seemed very perplexed at the side affect. For those with Keytruda rash, how bad was it?

Thank you. The previous tumor that was removed showed positive TPS 6-10% and a TMB that is considered high at 52.6. Supposedly these qualities of the tumor make it a good candidate for the keytruda or immunotherapy. Yes the NEO in front of immuno means they start the drug before they take the tumor out. The believe is if the tumor is there, then the drug has something to work against and if it shrinks they know it is working. If they cut it out first, then they would still do the immunotherapy, but would do the full year, but not really know immediately if it was working or not. I guess my fear is it spreads while waiting after 6 weeks or so to see if it’s working. I have a very fast growing nodular melanoma. It came up between visits to the dermatologist, and by the time they got to it, it already spread to my lymph node. My doctor says there is a 50 percent chance it will grow while doing the treatment but still feels it’s the best thing to do.

@jaxthecat Sounds just like mine indeed. I didn't start the Keytruda after the first incision and tumor removed. I mean, they said I was cancer free. Then the second appeared and I said, OK, give me some of that Keytruda. No real side effects and I have one more infusion next month. So far all scans have been clean.

@jaxthecat Sounds just like mine indeed. I didn't start the Keytruda after the first incision and tumor removed. I mean, they said I was cancer free. Then the second appeared and I said, OK, give me some of that Keytruda. No real side effects and I have one more infusion next month. So far all scans have been clean.

My story is very similar to yours. 3c melonoma right arm. It was big and deep. During surgery they cut it out but also took surrounding tissue. They explained the scar would be bigger, but taking surrounding tissue they thought was best. I too had 2 lymph nodes takes out. 1 negative, and the other had microscopic melonoma cells. I started Keytruda a few weeks after surgery. Thankfully I have not had severe side effects. I was super tired at first, but getting less so after 3 infusions. I have a PET scan next week (3 month check) to check things out and confirm the Keytruda is working. Keep me posted on your next steps.