Merkel Cell Carcinoma: I'd like to hear from others

My best suggestion is make sure you are scheduled for a Pet scan, this will produce staging info.
Get every first appointment possible.
Teaching hospitals are where you want to be, for me it was UVA. Fantastic experience there.
Also, start searching for your Dermatologist to be on your team.

Best of luck !

BuilderTom

I was dx the end of Dec 1023 and had surg in Jan 2024 and 30 radiation treatments in Feb and March. It is a scary thing and I had never heard of Merkel Cell. So far my scans are clean ( thank God) and my face is healed and I’m getting stronger and better every week. Get your surgery scheduled as soon as you can and get your treatment started as soon as you can. I was able to move up both my surgery and original biopsy by cancellations and lots of people praying. Find a treatment center that is familiar with this disease and treatment. Stay positive and active, you can do this. Praying that you beat this!

I was dx the end of Dec 1023 and had surg in Jan 2024 and 30 radiation treatments in Feb and March. It is a scary thing and I had never heard of Merkel Cell. So far my scans are clean ( thank God) and my face is healed and I’m getting stronger and better every week. Get your surgery scheduled as soon as you can and get your treatment started as soon as you can. I was able to move up both my surgery and original biopsy by cancellations and lots of people praying. Find a treatment center that is familiar with this disease and treatment. Stay positive and active, you can do this. Praying that you beat this!

I’m a newbie, female,71 years young, and I just talked to my ENT doctor about my Merkel diagnosis. He’s getting the ball rolling for a ct scan and surgery on my nose. He’s going to take a big chunk out (my wording, not his) and then I’ll have a skin flap and all the radical stuff. There goes my modeling career! Any suggestions or Support is appreciated!

I was just diagnosed with merkel cell carcinoma, and I’m in a bit of a daze. I haven’t been staged, and I am just in the “panic” stage. Does anyone have good resources or suggestions to proceed? Thanks!

Hi - sorry to hear that. I, too am Stage 3 Merkle cell carcinoma, diagnosed in April.

I am 57 year old woman - survived breast cancer in 2015. I am otherwise healthy and very active. I wasn't sick one day with the chemo I received. This immunotherapy has made me very sick. I started a two drug (IPI & Nevo) regimen immediately after diagnosis. I didn't get sick until after the third treatment, pancreatitis and colitis. This forced me to stop the cancer treatment until the steroids (really high dose prednisone could get it under control)
After more than 3 months, I finally received another immunotherapy treatment since my pancreas numbers were close enough to normal. Yikes, right back to pancreatitis. Back on prednisone 🙁

This is my first post as well.

I was just diagnosed with merkel cell carcinoma, and I’m in a bit of a daze. I haven’t been staged, and I am just in the “panic” stage. Does anyone have good resources or suggestions to proceed? Thanks!

Treatment is once every 3 weeks according to the doctors. He said that I will probably have this Treatment for the rest of my life.

I was diagnosed with MCC 2+ years ago in my R forearm. Tumor removed, all was good. Petscan was clear. January of this year BANG ! TUMOR via lymphnodes R Axillary. 36 rounds of radiation, again all was right with testing. No signs of the cancer. 2 weeks ago MMCC has advanced to my pancreas and some weird lymphnodes in the core of my body that they say can't be checked as they can't get to them via needle biopsy. My tumor DNA bloodwork has gone crazy high.
Has anyone ever been treated with Keytruda and how did it effect you. I start treatments on Monday, every 3 weeks. A bit nervous but hopeful. Would love to here any other experiences with this treatment. Best wishes for all.