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

@grammato3 After getting a second opinion with a medical oncologist and talking with the surgical oncologist a second time, Mom made the decision to start with the T-Vec. As of now, after bloodwork and the PET scan, the melanoma appears to be isolated to her leg. She had 3 injections on March 12 in the area where the biopsies were done and so far so good. She had a new spot appear prior to the treatment and it was removed on March 3. It was melanoma, but the margins were clear. We are praying the T-Vec works. Will keep you apprised.

@grammato3 thank you so much for the input.

@colleenyoung
Thank you for the follow up. The hepatitis had improved but returned after stopping prednisone so they have me back on it along with another immune suppressant. I am learning to manage the sleep challenge.
I had some very positive appointments this week. My oncology team includes a NP whom I normally see and meet with the MD only at significant times. I find the NP is not the best communicator. I did see the Oncologist this time. She was very positive about the complete pathological response of the lymph node tumor after the neoadjuvant flipped dose ipilimumab plus nivolumab. They are not recommending restarting the therapy. Resume scans and monitor.
She is confident the hepatitis will be resolved. I feel better that her plan matched the research I had done along with my personal thoughts and feelings about the future.
I also met with the surgery team and they were pleased with the progress on healing. No need for wound vac etc so great news there too.
It definitely is a windy bumpy road.
Thank you for the input and support and open to support others as needed.

@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.

@songinmyheart54 I'm glad you located the response. I wonder if for inquires in which symptoms may be mentioned Melissa may only have the capacity to respond to the more significant ones that are expressed or perhaps does not want to go against the protocol specifically stated by your provider as opposed to a general inquiry about duration. In any event, as long as you are comfortable witht the ongoing coordination of your Keytruda and symptom management, that is what matters for your individual case.

@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.

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.

@williamfh thankfully I dont have insurance issues with the cost. I received keytruda every 3 weeks.

@songinmyheart54: Sorry to hear that. It may be worth another try as Melissa is generally very good at getting back to inquiries, although I'd advise the shorter they are the easier it is for her to respond. Perhaps something along the line as to is there benefit to lifelong Keytruda infusions/ should melanoma return what would options be kind of question.
If you're comfortable or interested, you may consider that approach and let me know if you get an answer.