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

Hello @maryluph1953

I was thinking about you and wondering how your appointment went today. Did you get information about your plan for chemo? I hope you feel confident about the treatment plan.

Will you post an update when you have an opportunity?

Hello Mary, I'm Roger, 82 year old male, married 63 years and diagnosed with Merkel in August 2023. It showed up as a purple-colored small sore under my left eye. I had surgery to the left side of my face and the area removed with very little scaring. Merkel cells were found in a lymph node in the cheek so that moved it to Stage Three. I underwent 25 radiation treatments ending January 11th, 2024, and 22 immunotherapy infusions using OPDIVO.
The radiation was not pleasant and resulted in damaged salivary glands and tastes buds still not functioning properly but there has been no spread of the Merkel according to PET scans.
After 22 infusions there were complications that caused fluid buildup in both lungs. Immunotherapy was ceased and I am still undergoing steroid and antibiotic treatment that appears to be improving my breathing and oxygen levels.
There are difficulties in dealing with this rare cancer but the good news is I am still grateful to have life and love and beauty. Every day we have is a gift and there are folks who will go through it with you so you will never be alone.
Let me know if you have any questions.
Sending you hugs.

Thank you for sharing your story. Wishing you many more years! God Bless!

Hello. It's wonderful to hear that you've been living with the Merkel Cell for 11 years. Like you, but on his left arm just below his elbow, my brother-in-law noticed a bump in April of 2024. He didn't go get it checked out until August 2024, where it had tripled in size, and was growing very aggressively. They started infusions, where it wasn't reducing it's size at all! In October it was the size of a grapefruit, and very disgusting to see, however; the doctor's still hadn't scheduled surgery. So, he got another opinion, and was scheduled for surgery just before Christmas.
The chunk of flesh that was removed from his arm was shocking. Also, they had to do a couple skin graphs from the top of his thigh which he complained was more painful than the mass itself. The mass got to the point of continually bleeding just before his surgery. I guess I don't understand why they disfigured his arm instead of removing it at the elbow, because it still looks like the mass is still present? He is 70 years old but would like to live the remaining days of his life cancer free. I pray that his recovery is quick and pain free, but the lack of cases for this rare cancer doesn't offer very much hope of it Not returning to other parts of his body. I'm hoping any and all information shared could help in the research. God Bless all those suffering from this cancer.