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

my husband is receiving his Avelumab every 2nd week ....and will be on it i believe the rest of his life as well .

Hi @lynnemerk1 . You couldn’t just get normal skin cancer like the rest of us? You had to get a rare and special kind? Oh well. Anyway I found several articles on mayoclinic.org website search engine that might interest you. In the meantime perhaps one of the seven Merkel cell patients in the world might come forward with some specific help. Sorry I’m not much help but I did read if you smile, the cancer isn’t as noticeable.

So sorry to hear 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!

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!

Hello Lynn99, it is great to hear how you are doing! Most of my radiation side effects are dissipating and this week I complete my 20th infusion with no side effects. It appears the Merkel is in check but after four years my throat cancer returned. Fortunately, I was able to have surgery at Barnes hospital in St. Louis and it looks like I have been granted a reprieve in that the margins were clear after removing the cancer.
I'm still active playing golf, walking, working out and taking care of the yard. I hope you are enjoying your walks in the woods.
It was good advice you gave to Lynnmerk1. We are all in this together!

Lynn, I do worry about getting this done quickly…I think my job—and my husband’s—will be to research to find experts who will proceed as quickly as possible. Your story is inspirational!

Thanks, Tom! I am in NC and need to investigate Duke and UNC to see if either would meet my needs.

Hi My husband was diangnosed with Stage 3B merkel cell on his nose ....in summer 2021 ....he had it removed and all lymphnodes in R side on neck ...One lymph node did have MCC in it ....so he had 30 rounds of radiation ....fall of 2022 a follow up CT scan showed an enlarged Lymphnode in throacic region - lower chest ....around the Aorta...so non removable ...but they biopsied it and it was positive for MCC ....it increased rapidly within 7 months from2.5 cm to 12.7 cm ....so he received immediate another 30 rounds of radiation ....and followed by Immune therapy in Canada we call it Avelumab ...US I believe call it something with a Benovcia ...something like that ....his tumor after the radiation and 3 months of Avelumab went down to 5.4 cm ....with NO side effects ...doing well ...waiting on the results now for the 6 month CT scan results ....if you have any questions pls feel free to ask ..hugs wishin you all the best