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

Posted by williamfh @williamfh, Dec 29, 2024

It started a year ago, nodular melanoma on my right arm. Had incision to remove. Stated they got it all. Checked two lymph nodes. One negative, 1 small traces of cancer cells. A year later, two pumps come up very near the same spot. Its cancer again. Doctor wants to try Keytruda, Neoadjuvant immunotherapy. Starting the drug before the tumor is taken out. I'm concerned the tumor will grow in 6 weeks and may spread while getting treatment, which could make things worse. She states I'm a good candidate because of my positive TPS 6-10% and my TMB 52.6. After reading up on this drug I'm very nervous about the side effects, many that are permanent and non reversible. Latest stage diagnose is melanoma stage 3C because it recurred. I'm kinda at a loss with direction to go. Any experience using this drug out there?

Interested in more discussions like this? Go to the Melanoma & Skin Cancer Support Group.

williamfh | @williamfh | Nov 28 10:08am

In reply to @williamfh "How are your infusions going? Have you noticed any change in your prognosis?" + (show)

@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:)

ronsale | @ronsale | Nov 28 11:10am

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.

jaxthecat | @jaxthecat | Nov 28 5:22pm

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.

williamfh | @williamfh | Nov 28 8:14pm

In reply to @jaxthecat "My story is very similar to yours. 3c melonoma right arm. It was big and deep...." + (show)

@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.