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

Doing well! So far all scans are clean and I feel great. I’m getting scanned every 4 months still for the rest of this year then I’ve decided every 6 months for maybe 2 years. Thanks for asking. Just hiked to the top of the middle Teton, 6.5 miles 7000 feet elevation in 3.5 hours. Hiking is my passion so I’m grateful I can still do that. Just turned 58. Peace.

I'm doing pretty good on the keytruda. I've only had one dose so far, but am going for my second in 2 weeks. I only had stomach ache for 1 day. The tumor has definitely gotton bigger though on my arm...actually appears larger than the first one that was cut out. This second is only an ich away from the incision of the other taken out 1 year ago. The surgery team did a pep smear to see if they could see more than this one and a small satellite one only a centimeter from the larger one. I guess they wanted to schedule the surgery, but wanted to make sure it hadn't spread so I would be a candidate, The more I read about cancer and treatment, the more I realize no one knows what works and what doesn't. Every case is so different where some do all the stuff, chemo, radiation, target therapy, adjuvaunt, neoadjuvant, etc. I hope I made the right decision on keeping this tumor in while the keytruda has something to fight against, but in the back of my mind im thinking, "Cut this bastard out before it spreads"!

@rfannin: I think that's a very wise consideration. While there are general guidelines for the administation of Keytruda, it's definitely worth discussing the possibility of tailoring the infusions as you suggested due to your mother's past medical and safety concerns.

Once you've had the opportunity to discuss this with her oncology team, could you let me know their approach?

@jake072: @colleenyoung is correct. I had been sailing along fairly well with Keytruda for my Stage 4 melanoma with only a few speed bumps early on in my treatment…up until nearly the one year mark. The good thing at that time was my one metastatic nodule had resolved, but the bad is for the past six months I’ve been struggling with the effects of immune checkpoint inhibitor colitis including such related reactions as enteropathic arthritis. My activities of daily living have been fundamentally altered. But…I’m here. Years ago this diagnosis would have been a certain death sentence. As you’ve seen, this dreaded disease can rear its ugly head at any time, but how fortunate I feel to benefit from the interventions medicine has to offer. Sure, it’s not fun to take one (or more) medications to offset another but I realize if it wasn’t for Keytruda I’d be a lot worse off now.

While my oncologist has suspended further infusions, the hope is that once I get this current issue under control I can resume what I considered my “safety net”. Like any net, I realize i could lose my footing and fall through at any time. But what gratitude I have learned to express every day, for every moment - even the small joys found within them. I feel fortified with knowledge so that I am make informed decisions for whatever may come next, and hope to be at peace with those decisions.

Do what is best for you, and take some comfort that you are not alone.

@jake072, you have been through the wringer. I believe @grammato3 has related reactions to immunotherapy. I can understand your hesitancy to restart treatment with Yervoy after the experience with Keytruda.

How is your recovery from surgery going? Your liver? I sure hope you're able to get some sleep again.

I was diagnosed with 3C in May of 2023. It was on my calf and I had that removed along with 2 lymph nodes. I’m in Salt Lake City.
They started me on Keytruda once a month for a year. I had no side effects and felt fine for 11 months. In month 12 I suddenly felt very fatigued. I also became sick with a cold at the same time so difficult to tell what was going on. My oncology team sent me in for blood work and called and said I needed to start taking hydrocortisone as my immune system had attacked my pituitary and that was shutting down my adrenal gland. I was also told it is none reversible but at least I can take a pill for it. I have managed ok on this but don’t quite feel my normal self.
I also saw a comment about the infusion nurses saying Keytruda is pretty safe. I was told the same thing and agreed as I was doing fine. However I stopped and did not take the last dose. I’m sure the nurses don’t hear about that.
Anyway I was getting scans & ultrasound every 3 months and all clear for 2 years. Suddenly one day I noticed a lump in my groin. Turned out it was melanoma in a lymph node (same area as before). They started me on 3 treatments of combination immunotherapy before surgery.
I did notice the lymph node shrunk after 2 months of treatment and when biopsied after surgery it was dead. I had full lymph node removal in the groin which I’m still recovering from (7 weeks a challenging surgery) In meantime I’ve had a toxic reaction, hepatitis (liver). They put me on a prednisone which has controlled the hepatitis but really messed up my sleep.
I’m going in in a few weeks to meet oncology. They have hinted at starting Yervoy again. I’m very hesitant after two very significant toxic reactions one life long.
Any thoughts on that topic would be appreciated.
So not sure what Keytruda did for me other than make me adrenal insufficient, have to wear a medical bracelet, and carry an emergency syringe if I go into adrenal shock.
It’s a tough call if it was worth it.

@grammato3 I finally did hear from Melissa. Even though I had checked my junk mail a few days later that's where it was.
She didn't respond to lifetime keytruda so I wrote her again.
She suggested a medication for my breathlessness but after reading about it I feel it would be very dangerous for me.