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Merkel Cell Carcinoma: I'd like to hear from others
I am new here, and just last month my mom was diagnosed with Merkel Cell. She had a large tumor on her face. I am looking for the Merkel Cell group to get more information and hear others stories. I know Merkel Cell Carcinoma is a very rare form of skin cancer, so I know there may not be many in the group. Any help would be greatly appreciated!
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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.
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5 ReactionsHello @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?
It depends on where you live .
Thinking of getting a second opinion since merkel is so rare. Doing some research on the best place to go.
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1 ReactionThank you!
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1 ReactionI look forward to hearing from you, @maryluph1953, as you continue this journey with Merkel Cell. I would encourage you to read the other posts in this discussion thread. If you want to ask any questions or make any comments, just "Reply" to the post and type your question or comment.
Will you post again and let me know how you are doing?
Yes I will find out my chemo plan on Thursday. Feeling good and off steroids. Just really wanting to connect with others. All my merkel has appeared as knots u er my skin.
Have a great Saturday!
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1 ReactionHello @maryluph1953
I see that you are in the process of treatment for Merkel Cell Carcinoma and that immunotherapy was causing elevated liver enzymes. Has your oncologist determined if another chemotherapy treatment will be tried after the steroid treatment? How are you feeling?
No I had a lumpectomy in Feb. and now it has shown up blow my right shoulder and have had surgery and a port for chemo. Immunotherapy was making my liver enzymes go up so I had to stop and get on steroids.
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1 ReactionWelcome @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?
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