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

@itchyrich: Got it. Waiting to hear about surgery outcomes is hard. Please let me know how she came through this when you hear and get a chance.
And as far as “kids” go, I’m in the same boat. Seems no matter how old they are, we still worry about - and want the best for - them, whether they take our advice or not!

I wasn't really asking anything, just providing some real life examples of how melanoma can affect families. Her surgery has been planned from the beginning. The surgery should be done by now and I'm waiting to hear something. My daughter swears she gets annual skin checks but she lives 400 miles away so I don't know for sure. She's 52 now so I have to assume she's telling the truth. 🙂

@itchyrich I'm sorry to hear about your niece. Was this a planned surgery following neoadjuvant chemotherapy (chemo provided before surgery in the hopes of shrinking or stopping the spread of a tumor) or had it spread after she had started immunotherapy and the unfortunate complication? In any case, wishing her all the best for a successful outcome. She has a very compassionate uncle!

She and her sister were proactive to undergo genetic testing. I take it you mean your brother - their father - had no history of melanoma but you had over 30 years ago, and are concerned about your daughter possibly having a predisposition. I'll speculate, too, that there was a genetic tie to their mother's side and you happened to have a melanoma as well - as it can affect approximately 1 in 40 people.

As genetic testing can reveal various types of mutations associated with melanoma, with some variations associated with a much stronger familial incidence, it may be helpful to find out from your nieces what their testing specifically revealed. Once your daughter has that information - along with the dates, family relations and types of melanomas that had been diagnosed and treated - she may be able to better discuss these findings with her dermatologist to arrive at an informed decision, while continuing to undergo her advised skin exams. Other factors to consider is if the testing would be covered by insurance, which would potentially be based upon medical necessity; if not, the costs can run into the thousands.

I'm not sure if you were asking anything in particular but I thought I'd provide some background. Does this help?

My niece is on her way to San Francisco for surgery tomorrow as I write this. She was diagnosed with a Stage 3 melanoma on her arm in February and has been undergoing immunotherapy since then, with an intervening case of C difficile which caused a short delay in the process. A lymph node in her armpit is where it spread to. Her sister had a non-metastatic melanoma 15 years ago. I had a non-metastatic melanoma in 1992. The two of them had a DNA test which showed they might be predisposed to melanoma. My late brother, their father, had no such problem. I have been bugging my daughter to have the test but it hasn't happened so far.

Thank you Susan!

Thank you so much Suan! I'm trying to stay positive.

Thank you 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!

@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

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.