1. < Neuroendocrine Tumors (NETs)

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

Posted by redneckchic501 @redneckchic501, Feb 9, 2023

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!

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 27 4:07pm
In reply to @lostaglt "Hi Colleen -- I'd like some more questions to ask my doctor this week. I had..." + (show)
@lostaglt

Hi Colleen -- I'd like some more questions to ask my doctor this week. I had no idea that MCC had stages. Sentinel lymph node removal was negative ... negative margins around tumor removal.

I had a golf ball size MCC on my forearm removed June 21, 2024 and no radiation treatment has been suggested / planned - this is not making me feel comfortable.

In addition, week 3 now -- the skin graft appears to have a pea size MCC - looks similar to many MCC tumor images I see (different from my original MCC which was under the skin).

I could use some support.

Thank you.
- Theresa

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@lostaglt, did you have an appointment with your doctor this week? What did you learn?

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maryluph1953 | @maryluph1953 | Oct 11 4:30pm

Would appreciate anything on Merkel Cell Carcinoma?

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 11 6:16pm
In reply to @maryluph1953 "Would appreciate anything on Merkel Cell Carcinoma?" + (show)
@maryluph1953

Would appreciate anything on Merkel Cell Carcinoma?

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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?

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1 reply
maryluph1953 | @maryluph1953 | Oct 11 10:18pm
In reply to @colleenyoung "Welcome @maryluph1953, I moved your post about Merkel Cell Carcinoma to this related discussion: - Merkel..." + (show)
@colleenyoung

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?

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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 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 12 11:09am
In reply to @maryluph1953 "No I had a lumpectomy in Feb. and now it has shown up blow my right..." + (show)
@maryluph1953

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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Hello @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?

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1 reply
maryluph1953 | @maryluph1953 | Oct 12 11:18am
In reply to @hopeful33250 "Hello @maryluph1953 I see that you are in the process of treatment for Merkel Cell Carcinoma..." + (show)
@hopeful33250

Hello @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?

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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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2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 12 11:41am
In reply to @maryluph1953 "Yes I will find out my chemo plan on Thursday. Feeling good and off steroids. Just..." + (show)
@maryluph1953

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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I 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?

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maryluph1953 | @maryluph1953 | Oct 16 9:21am

Thinking of getting a second opinion since merkel is so rare. Doing some research on the best place to go.

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mktz49 | @mktz49 | Oct 17 10:34am

It depends on where you live .

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