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DiscussionMerkel Cell Carcinoma: I'd like to hear from others
Neuroendocrine Tumors (NETs) | Last Active: Oct 20 7:30pm | Replies (133)Comment receiving replies
Replies to "Would appreciate anything on Merkel Cell Carcinoma?"
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.
Welcome @maryluph1953, I moved your post about Merkel Cell Carcinoma to this related discussion:
- Merkel Cell Carcinoma: I'd like to hear from others
https://connect.mayoclinic.org/discussion/merkel-cell-carcinoma-1/
I did this so you can click the link and read previous posts where you'll meet others like @redneckchic501 @dreams @rogermcintire @elizabethc0394 talking about merkel cell carcinoma.
Mary, is this a new diagnosis for you?