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

Hey there, I was diagnosed with Stg IV Melanoma five+ years ago which led to surgery(removed original site on shoulder and lymph nodes in armpit) and immunotherapy. The drugs I took were Ipilimumab(Yervoy) and Nivolumab(Opdivo) concurrently for three times(three weeks apart), I was unable to take the last recommended dose. After that there was a brief pause due to side effects and Covid hysteria( it was March/April of 2020 ) and I continued with Opdivo for almost three years. At the time Yervoy/Opdivo combo was pretty much the only good option for StgIV but maybe that’s changed since then, I know they were looking at targeted therapy(forgot the name since I never ended up doing it but it worked on a gene mutation with the BRAF gene) as an option. Anyway, the side effects were quite a bit more severe for me with YervoyOpdivo together vs just Opdivo. You didn’t say which names so it could be a different scenario. There used to be a melanoma specific forum that had several people with immunotherapy histories that was pretty informative but i haven’t been doing any of that for years now. I feel like I wouldn’t be alive now without that course of treatment but you’re Stg III so may have a different regimen.

I was diagnosed with nodular melanoma on the top of my left ear a little over 2 years ago. It was removed with surgery and the margins were all negative. In my visit to my dermatologist we found a swollen lymph node just below the left ear which is malignant. MRI says that lymph plus salivary gland has cancer. Drs said at least 3b Talked to the oncologist today and have decided to go on 2 immune drugs for 4 (or 6?) weeks and then do surgery to remove the cancer. Then go on immune therapy for 1 year. Will have pet exam next week to see if it has spread. Has anyone used 2 drugs vs 1 drug? Please any positives or negatives to this approach?

Hello @ronsale. My oncologist mentioned using steroids (cortisone) to help control side effects of an immunotherapy and I wondered if that has been suggested to you? I was on a different PD-L1 inhibitor for 2 years but managed through without needing any treatment for side effects. A holiday from infusions was also discussed but I don't know how long a break would be needed to clear the rash. It sounds like your tumor is responding to this treatment plus palliative radiation and I hope that continues for a long time.

I have been on Keytruda for 13 months with 14 infusions done. My 15th of a total of 18 planed is scheduled for next Tuesday. However, the rash I have had from Keytruda which soon started after treatment began has spread to almost all parts of my body and has become quite severe. So, I am planning to either stop the treatment or to take a break for a couple of months after consult with PA next week. My malignant kidney tumor was diagnosed two years ago this month, and I opted out of total nephrectomy because of my age. High dose radiation therapy was done last June to stop bleeding from the lesion; it was successful. Last MRI in March showed lesion has reduced in size slightly and there is no spread. It's been a long fight but I remain hopeful.

@beebe, how is the rash?

Wondering if you still have the Keytruda skin rash. A rash started around my neck 5 days after the first infusion. I've contacted my oncologist and am waiting for a call back. In the meantime I am using 1% OTC hydrocortisone and Allegra. Were you prescribed a special cortisone for your rash and did it ever go away?

Hi Charlene. I hope you're recovering well from your surgery; I see it wasn't all that long ago you'd gone through your biopsy so I imagine you've been grappling with a lot these past few months.

I, too, was diagnosed with metastatic melanoma in my lung back in November when I started on Keytruda. I've had 6 infusions so far and have been doing fairly well. My lung nodule responded very favorably after three cycles but of course I need to remain on the immunotherapy which is not without potential side effects and everyone responds differently.

The best bit of advice I could give you would be to familiarize yourself with the potential adverse effects in the event you should become aware of developing one you can notify your team early on. For example, I had a slight skin rash after my third infusion I immediately notified my oncology team about so I was seen and started on a corticosteriod cream which helped keep it in check. Last week I realized the neck symptoms I was experiencing were related to thyroid issues that can occur as a result of pembrolizumab so again I was seen for evaluation and treatment. My husband had initially warned me I was reading "too much" as he feared I was getting alarmed about possibilities that may never occur - which is true; some might not. But at least I felt prepared and ready to act on those that did without panicking or waiting too long until they may have become more uncomforfortable or difficult to treat.

Be sure to inform anyone who is treating you for any issues - other providers, even aestheticians if you're getting massages or facials - that you're receiving immunotherapy - as you may be more sensitized to fragrances, alcohols, preservatives or dyes as your skin may be more sensitive.

I do give into how I'm feeling on certain days and try not to push myself or feel guilty if I'm feeling fatigued - it's okay to go along with simply "being". A saying I remind myself of on such days is: We're human beings, not human do-ings! Go at your own pace. We'll always be here for you.

@williamfh, have you had the biopsy? Any update? How are you doing?