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

Yes. I was referencing this study: https://journals.lww.com/aomd/fulltext/2024/07030/subacute_parkinsonism_induced_by_immune_checkpoint.11.aspx.

Let me know if this helps or was similar to your situation.

Thank you for your kind reply to my comment. I wonder if you remember any more details on that comment that you've noted. I went to the website and searched but found nothing that really matched up specifically. Thanks again.

@terrierlover: Welcome to Mayo Clinic Connect and thank you for sharing your experience with us. Trying as it was, you’ve certainly landed in a good place with encouraging news for others who may be struggling with similar AE’s (adverse effects) that can accompany checkpoint inhibitors such as Keytruda (pembrolizumab). There was actually a report on this unusual effect published last year in the Annals of Movement Disorders treated in a patient with a similar Parkinson’s medication.

Immunotherapy is still relatively new so I believe the medical community continues to learn more about treating potential AE’s as this treatment has yielded such positive effects overall in the management of metastatic melanoma. I’m so sorry you suffered for so long but I’m encouraged to hear there has been a root cause determined and, most importantly, a solution found! How wonderful you’ve been restored to good health.

I appreciate you sharing this with us. Are you participating in any ongoing trials or surveillance at this point?

I was an early Keytruda patient and had to stop after 11 infusions due to AE's but it turns out that I had responded almost immediately to the Keytruda, like with the first two infusions. They continued with it until I had to stop and soon after I stopped, all the AE's and endocrinopathies started to pile on, one after another. The docs were sort of clueless, since I was one of the first patients and they hadn't observed all the AE's yet. That was ten years ago and I'm still alive but I've suffered unimaginably from acute chronic fatigue and malaise that would land me in bed for months at a time. After ten years of that, and at wit's end, I decided to start with my own research and discovered that, along with all my other irAE's that I had a Dopamine deficiency. I started on the old Parkinson's drug, Sinemet, about three weeks ago and it's changed my life....NO MORE FATIGUE at all. The acclimation was a little rough for about 10 days, but after getting through that, the reward is that I have my life back after suffering through ten years of it with absolutely zero clue from any doctors, including those at Stanford and UCSF who specialize in immunotherapy related irAE's. They probably still don't believe it but my life is a testament to it.

@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.