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

@williamfh Update: I have 1 more infusion to go at the end of December. I haven't had any side effects physically or mentally while on the Keytruda. My infusions have been spaced apart 45 days for 1 year. I have been getting scanned every three months with MRI, and every other time they do a CT and MRI scan. Nothing has been found on the scans. Its really hard to see if the Keytruda is actually doing anything though. I mean, I had both tumors cut out, and before I had the second one cut out I did have a few infusions of the Keytruda, but it actually got a little larger over those few months. Of course the doctors say it could actually be working:
"Yes, a tumor can get larger while on Keytruda in the neoadjuvant setting and still be considered working, as immunotherapy can sometimes cause temporary growth before shrinkage. This can happen because the drug works by activating immune cells, which can cause inflammation around the tumor site, making it appear larger on scans. It is also possible for cancer to progress during treatment, and a doctor will monitor for signs of this."
My cancer was nodular melanoma. Very fast growing. Bottom line is I feel fine, can still hike 17 miles a day, eat normal, exercise, and live a very active lifestyle. I'll continue getting scanned every three months for the next year, then taper off to every 6 months for 5 years it seems, then I guess after that I wont be going back for radiation for no reason:)

My infusion of Keytruda is for malignant lesion on one kidney that was diagnosed March of 2023. Total nephrectomy was treatment that urologist recommended, but because of my age - - now 83 - - I refused. Instead I have been on Keytruda alone for 20 months and have had 19 treatments. Last scan showed lesion shrunk and no cancer spread. As to side effects, I continue to have severe skin rash. I share your concerns of serious side effects, and I am at the point of stopping infusions. Next infusion is scheduled for beginning of January, but I probably stop after discussion with oncologist.

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.

@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.

That is great to hear!

@williamfh

That's great news!

@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?

I gather yu declined the immunotherapy after the first cancer, right? That is my situation right now. First melanoma has been surgically removed but was stage III and doctor recommends Keytruda. I am afraid of the side effects b/c of many other medical conditions and am looking for others who have made a choice either way.

@rfannin rash and itcing can be brutal. It is one of the reasons I have declined Keytruda for myself. I do not know if Keytruda would have exactly the same rash effect as Opdivo, but it is one of the more common side effects. It is medically considered "not a serious side effect," b/c it is not usually life threatening, but it sure is life-interrupting. I will be glad to read answers to your Keytruda rash question myself.