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

Yes they want to do an immune infusion every 28 days - 3 infusions and then talk about surgery. I have no issues with the immune therapy but am somewhat concerned waiting to discuss surgery. I have nodular melanoma and it spreads fast. If the immune doesn’t work then I’ve waited 3 months to get rid of the 2 tumors with surgery/radiation

@tja: Yes, nodular melanoma does come with its own set of challenges. I wonder if your doctor's plan in providing the immunotherapy first is to shrink the tumors to pave the way to an easier surgical procedure if you will, and lessen the chance of recurrence. Immunotherapy also helps the body to prepare in a way to attack cancer cells even after surgery and actually improve your body's immune system in that manner. At least that's my understanding from these types of approaches and my take-away about such trials.

This is certainly a lot to deal with in a relatively short span of time and it's a lot to digest. Aside from the portal are you able to make either a telephone or in-person appointment to discuss your concerns and/or get a better understanding of your doctors approach?

Yes will be discussing it with them but time is a wasting.

I had the same concern...about waiting, and giving the melanoma a chance to grow while "Waiting" to see if the keytruda did anything. I did the adjuvant keytruda therapy. Basically if you do some research they say there is a better survival rate for melanoma reoccurance for those who took the Immunotherapy therapy for 3 injections and left the tumor in, than those who took out the tumor, then did the Immunotherapy therapy.
I guess this way, they can monitor the tumor to see if it has an effect on it, if it continues to grow or shrinks. After 3 injections I went ahead and took out the second tumor through surgery. At the follow-up, it appears the immunotherapy had a minimal effect on the tumor. About a 4% response rate. Not too promising. But an effect non the less. My last MRI scan after the theropy didn't find anything, but the pet scan did. A very very small trace of what could be considered melanoma in the same arm. Too small to cut out when they cut out the other. They couldn't find it to try to remove it. But my last scan about 3 weeks ago didn't find anything. It was an MRI, not a Pet, which doesn't find the small stuff. In fact, I visually found my other melanoma about 1 inch from the first one on my arm, where the MRI scan didn't even pick it up. You need to be on your game and visually check yourself frequently. Nodular melanoma sneaks up and grows very fast. I know!
I wish you Gods Speed!

Thanks so much for this information. I must have missed the research where they said therapy then cut ends up better than cut then therapy. Did you ever consider TILs?

Yes that is what he is proposing

@tja It's good to be an active participant in your care so discussing options and the rationale for approaches in treatment is very helpful. Sometimes it's hard to know what questions to ask ahead of time and it can be useful to be prepared by writing them down for the discussion, along with the doctor's answers.

The Melanoma Research Alliance provides a list of useful questions for such an approach under a heading for melanoma/adjuvant therapy. Are you familiar with their website?

Hi William,

I hope that you are doing great with the treatment that they are providing you and I'm sorry that I didn't see your post earlier.
In 2023 I had an issue with my left thumb that wasn't bothersome at all. I ignored it. When in got worse I went in and had my Primary Physician look at it. After the usual test came back negative the whole team was stumped. They sent me to a dermatologist who ordered a biopsy. On May 15 2024 they removed the entire thumbnail on my left thumb and took a biopsy. On May 20, 2024 I was told that I had a stage IIb malignant melanoma tumor under my left thumbnail and that may thumb will need a partial amputation down to the first knuckle. Very uncommon and described as aggressive... I still had my doubts and struggled with the removal of my thumb.
On May 29, 2024 they removed half of my left thumb down to the first knuckle and they took out the sentinel lymph node. The Sentinel lymph node was negative. Thank God!
The oncologist put me on Keytruda to reduce the chances of melanoma returning. I was scheduled for the IV infusions of Keytruda every 3 weeks for a year. I had MRI's PET scans, CT scans and Ultrasounds done galore.
Fast forward to May of this year (a year from when the original Melanoma showed up) A Ct scan and ultrasound showed that the melanoma cells metastasized to my lymph nodes. It was a disappointment to everyone including on my care team. 12 treatments of Keytruda didn't work so the oncologist switched me to two treatments of Opdivo and Yervo mixture before surgery to remove the lymph node. They melanoma should not have re-occurred during the Keytruda treatments, but it did, everyone was bummed out for sure. This meant that the next step was surgery.
On June 19, 2025 they removed 32 lymph nodes, 4 of which had melanoma. None of the immunotherapy work on my melanoma. I went through almost a year of immunotherapy side effects for no results.
My side effects from Keytruda were relatively mild considering the terrible possibilities. I was itchy on my head and body but that was manageable with creams and such, so not too bad. I also had fatigue from about the third day for up to a week after the treatment. That was insane because I'm usually really active. The Keytruda wiped out my thyroid gland. The thyroid readings were normal before Keytruda and then went through the roof with Keytruda. This was a possible explanation for some of the fatigue.
The side effect of the two Opdivo/Yervo treatment were minor also. One of them is dry mouth, saliva dried up. I've never experienced anything like this before. Food has little flavor and hard to eat. I'm really hoping that this improves as time goes on.
Now that surgery removed the melanoma, we're in a watch and see mode. Moving forward, the oncologists is transferring my case to the tumor review board at the Mayo clinic in Rochester MN and getting me hooked up with their melanoma treatment center. Should the melanoma return, and since the immunotherapy hasn't been effective, the next step will be do the TIL melanoma treatment at the Mayo. I'm told that I have a 55% possibility that the melanoma will not occur again. Not good odds but I hope and pray that it doesn't return and I don't have to do any further treatments.
My melanoma case is very unique and uncommon, so I'm not a good case study for anyone. In my mind, even though the Keytruda didn't work for me, if there is any hope of the melanoma responding to it, I would still recommend trying it. You can always stop should it if the side effects start to outweigh the advantages. I have no regrets that I tried it and that I followed my care team's advice.
I hope this helps!
Peter V.

@petervillard Welcome to Mayo Clinic Connect! Thank you for sharing your experience. I have no doubt there will be others reading this, and wishing you well, as I do.
Ginger

@petervillard I join with @gingerw in welcoming you and thank you for sharing both your background and encouragement. I hope you continue to inform us more about your experience at Mayo Rochester. I'm going to take the odds as being in your favor as it's better than 50/50 and it my book that's positive!