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Melanoma: What are your tips about immunotherapy (Keytruda)?
It started a year ago, nodular melanoma on my right arm. Had incision to remove. Stated they got it all. Checked two lymph nodes. One negative, 1 small traces of cancer cells. A year later, two pumps come up very near the same spot. Its cancer again. Doctor wants to try Keytruda, Neoadjuvant immunotherapy. Starting the drug before the tumor is taken out. I'm concerned the tumor will grow in 6 weeks and may spread while getting treatment, which could make things worse. She states I'm a good candidate because of my positive TPS 6-10% and my TMB 52.6. After reading up on this drug I'm very nervous about the side effects, many that are permanent and non reversible. Latest stage diagnose is melanoma stage 3C because it recurred. I'm kinda at a loss with direction to go. Any experience using this drug out there?
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@songinmyheart54: Have you gotten a response from Melissa at AIM at Melanoma? Just an FYI in my particular case as I had to suspend Keytruda for my metastatic melanoma - for which there is currently no evidence of disease - due to toxcity and in consideration of some other conditions I have - but both my oncologist and a seminar led by oncologists from Sloan Kettering I've attended have indicated that chemotherapeutic agents, such Dacarbazine or a group known as taxanes could be considered should my melanoma recur. It may be worth exploring as opposed to remaining on immunotherapy indefinitely, which is certainly your choice.
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Thank you for the update. No I never did hear from anyone.
@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.
@williamfh thankfully I dont have insurance issues with the cost. I received keytruda every 3 weeks.
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.
@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.