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

@mikenjoy76 I’m sorry to hear of the adverse effects you’ve had from Keytruda. I’ve been on Keytruda for a year now and while it has shown evidence of success in treating my underlying malignancy, I’ve also experienced issues with side effects of varying degrees, In my case, I’d been aware of these at the outset of immunotherapy as patients these days are generally informed of all potential consequences of treatment.

I see you’ve had a history of several melanomas, and that now - if I’m following correctly- there appears to be concern of potential malignancy in the lungs and brain. There are unfortunately cases in which Keytruda - or any particular immunotherapy- may not work effectively in resolving malignancy, however, they have not been known to actually cause spread of an underlying cancer.

It is important to be aware of possible side effects and adverse reactions - as well as early identification so that proper medical intervention can be initiated- when undertaking any medical procedure or treatment so one can weigh the risk vs benefit. Conversation with your medical provider about such issues are highly recommended in order for sound decisions to be made. Thank you for bringing this up for discussion.

I had melanoma on my back 3 times. Each time my Lymph nodes were negative. On the third time my surgeon told me to see an Oncologist just to establish a relationship for future issues. The Oncologist that was referred immediately said for precautions we should put you on Keytruda. A CT scan showed nothing, all body functions and components clean and functioning as they should. Well the Keytruda kicked my Assad made me constipated still am after a year off. Lost all my energy, pain in my hands are horrible and now showing signs of degenerative neuropathy and after 1 year since My last infusion now my left lung is full of small nodulesand 1 large at 2.286 CM which they are concerned about and now I am being tested for that along with a brain MRI to see if it moved there. My question after findings were did Keytruda do this and the answer was YES. I was told that zKeytruda can affect other body components during infusions. I am pissed that a so called precaution has now turned into a possible life threatening issue for me and my family. PLEASE BE AWARE OF THE ISSUES THIS DRUG CAUSES BEFORE YOU AGREE TO INFUSIONS, Especially for Precautionary measures!!!!

I want to add an update to this post. While I've only been on Sinemet for two weeks, it continues to keep my fatigue in check. A few days ago, I upped my dose from 1X daily of 100mg Levodopa/25mg Carbidopa to 2X daily a few days ago. Since then, I haven't been feeling well and I've developed a Parkinson's-like tremor in my hands. With my doctor's approval, I will probably go back to the 1X daily dose, which was working effectively without any side effects. I'm very concerned about the tremors, of course, but I'm not sure yet how to proceed safely. I wil continue to update this post as I discover more. God bless...

@ronsale: Aside from the skin rashes and sores that sounded like they must have been very uncomfortable, your favorable response is encouraging! I've heard of the Natera lab testing but you're the first I've known of who has actually undergone it, very reassuring I'm sure.

You're certainly entitled to have some low energy but with end of infusions in sight, hopefully that will be improving shortly. Can you check back in by years end and let me know how you're doing?

@terrierlover: Fatigue can be so multifactoral. I myself am hopefully getting over a bout of it, combined with some other symptoms, that landed me in the hospital for a few days. When I told my son I'd spent most of Saturday sleeping, he replied, "Sounds like my ideal day!". Well, it is until it isn't - if you know what I mean, and I sense you do.

As far as the Doapamine agonist, perhaps this will be a new off-label use for the drug. Now that you're left with only some mild fatigue, what activities do you enjoy?

Thank you so much for this....very helpful and interesting. Though I have no Parkinson's symptoms at all...yet, this Dopamine agonist resolved my fatigue almost completely. I've been ill for so long that I don't really know what's normal aging (I'm 71, very fit and otherwise healthy) so I don't know if the mild fatigue I have left is a function of my age, or lingering asthenia from the Keytruda. Anyway, thank you for your reply and for the link.

I have been taking Keytruda for 18 months since I opted out of surgery for my kidney cancer that was diagnosed in April 2023. I have had 16 infusions with two more scheduled. My last CT scan in July showed that the malignant lesion on the one kidney is no longer visible and there is no spread of cancer. Also, Natera blood test which detects lesion DNA circulating in plasma done last month was negative with no lesion DNA in blood detected . My next infusion is scheduled forend of this month. I take no other medication other than Keytruda. I have had severe skin rash and sores from the Keytruda and my energy level is low. I plan on stopping Keytruda after 18th infusion. I am an 83 year old male.

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?