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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Yes they want to do an immune infusion every 28 days - 3 infusions and then talk about surgery. I have no issues with the immune therapy but am somewhat concerned waiting to discuss surgery. I have nodular melanoma and it spreads fast. If the immune doesn’t work then I’ve waited 3 months to get rid of the 2 tumors with surgery/radiation
@tja: Yes, nodular melanoma does come with its own set of challenges. I wonder if your doctor's plan in providing the immunotherapy first is to shrink the tumors to pave the way to an easier surgical procedure if you will, and lessen the chance of recurrence. Immunotherapy also helps the body to prepare in a way to attack cancer cells even after surgery and actually improve your body's immune system in that manner. At least that's my understanding from these types of approaches and my take-away about such trials.
This is certainly a lot to deal with in a relatively short span of time and it's a lot to digest. Aside from the portal are you able to make either a telephone or in-person appointment to discuss your concerns and/or get a better understanding of your doctors approach?
Yes will be discussing it with them but time is a wasting.
I had the same concern...about waiting, and giving the melanoma a chance to grow while "Waiting" to see if the keytruda did anything. I did the adjuvant keytruda therapy. Basically if you do some research they say there is a better survival rate for melanoma reoccurance for those who took the Immunotherapy therapy for 3 injections and left the tumor in, than those who took out the tumor, then did the Immunotherapy therapy.
I guess this way, they can monitor the tumor to see if it has an effect on it, if it continues to grow or shrinks. After 3 injections I went ahead and took out the second tumor through surgery. At the follow-up, it appears the immunotherapy had a minimal effect on the tumor. About a 4% response rate. Not too promising. But an effect non the less. My last MRI scan after the theropy didn't find anything, but the pet scan did. A very very small trace of what could be considered melanoma in the same arm. Too small to cut out when they cut out the other. They couldn't find it to try to remove it. But my last scan about 3 weeks ago didn't find anything. It was an MRI, not a Pet, which doesn't find the small stuff. In fact, I visually found my other melanoma about 1 inch from the first one on my arm, where the MRI scan didn't even pick it up. You need to be on your game and visually check yourself frequently. Nodular melanoma sneaks up and grows very fast. I know!
I wish you Gods Speed!
Thanks so much for this information. I must have missed the research where they said therapy then cut ends up better than cut then therapy. Did you ever consider TILs?
Yes that is what he is proposing
@tja It's good to be an active participant in your care so discussing options and the rationale for approaches in treatment is very helpful. Sometimes it's hard to know what questions to ask ahead of time and it can be useful to be prepared by writing them down for the discussion, along with the doctor's answers.
The Melanoma Research Alliance provides a list of useful questions for such an approach under a heading for melanoma/adjuvant therapy. Are you familiar with their website?