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

Hello @charlene9 .
My husband was on Keytruda for bladder cancer. In the 5 months he was on it, he really lost his appetite because foods just didn't taste right. He was quite tired for a few days after the infusions. He ended up hypothyroid and now takes thyroid supplement daily. His highly aggressive urothelial cell carcinoma wasn't fazed by Keytruda and with his side effects it was stopped. I was on a similar drug Libtayo for 2 years for my metastatic squamous cell carcinoma form head and neck origin. It is also a pd-1 blocker. I had the same food taste issues and fatigue but it was quite tolerable. The drug shrunk my latest met to the kidney and lymph nodes and it has not come back yet and I have been off it for a year. I hope you get an equally successful response from Keytruda.
Keep a positive attitude by looking ahead to something positive. When you are battling cancer it helps to make short term goals to meet, a graduation or wedding of a family member, a grandchild's birth, just activities you enjoy in the change of seasons, whatever you can think of. Crossing these goals off as you meet them helps you to see how far you have come. Even without a cure, there are new medications and treatments available all the time to help us live with our cancer. Just keep kicking the can down the road, one kick at a time. Be strong.

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.

I too am receiving Keytruda for kidney cancer. So far I have had about 5 infusions and have had no side effects. My last CT scan showed my lymph nodes had shrunk to half size since starting Keytruda. So far...so good.

Thank you for that I hope you continue to improve

Char

@charlene9, how are you doing? Have you started Keytruda now?

I am recovering well from surgery and start keytruda on Monday the 31st

I’ve had two doses. Third coming up in a week. I haven’t had any side effects so it’s no big deal for me. I did the adjuvant treatment, after they took out one tumor on my arm. Another came up a year later, that’s when I decided on the keytruda. After the two doses I went ahead and took the other one out near the same spot. I did get my biopsy back and it appears it had a slight response…but only 10-15% shrinkage, although it grew and grew while I waited for the two doses. I have no idea how it shrunk when it doubled in visual size during those 2 months. I have nodular melanoma it seems.
They suggest keep taking for the whole year. Maybe it is taking longer to work. I dunno. But then I hear it’s a good thing when there are side effects, because it means it’s working. Since I have had no side effects that remark isn’t encouraging. Just leaving my life and getting scanned here and there. Physically I feel fine so I still have a hard time believing I have cancer.

Yes I had the biopsy. It appears it had a 10-15% response. Not earth shattering by any means. I go for my 3rd infusion tomorrow. I’m a little concerned about that spot on my arm the pet scan found. Just got back from a wilderness backcountry trip where I hiked 105 miles in a week so I’m still feeling great.