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.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 12, 2024
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 11, 2024
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?

Jump to this post

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
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 11, 2024
In reply to @maryluph1953 "Would appreciate anything on Merkel Cell Carcinoma?" + (show)
@maryluph1953

Would appreciate anything on Merkel Cell Carcinoma?

Jump to this post

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?

REPLY
1 reply
maryluph1953 | @maryluph1953 | Oct 11, 2024

Would appreciate anything on Merkel Cell Carcinoma?

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 27, 2024
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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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 27, 2024
In reply to @buildertom "My best suggestion is make sure you are scheduled for a Pet scan, this will produce..." + (show)
@buildertom

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

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Helpful suggestions, @buildertom. When were you diagnosed with merkel cell carcinoma? How are you doing now?

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dreams | @dreams | Jul 23, 2024
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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Hello Theresa, so sorry to hear you are going through this cancer!!
I am wondering if your medical team drew blood to see if you had developed any antibodies for for Merkle Cell? My Merkel cell tumor was on my eyelid, it was 3 mm. It was surgically removed in 2020. I then had 25 radiation treatments. At that time they did a blood draw to see if I had been making any antibodies which I had not. I have blood drawn every six months to check to see if my body is making any antibodies. The first three years I had pet CT scans every three months. Then I graduated to one PET Scan CAT scan each year. Now I have a CAT scan once a year, and have a dermatology appointment. Every 6 months. Keep doing your research ask lots of questions and like someone else said you really do need to be your own advocate. Hang in there, praying for you!!!!

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mktz49 | @mktz49 | Jul 23, 2024
In reply to @lostaglt "I had a meatball sized MCC on my left forearm removed in June 2024 at Mayo..." + (show)
@lostaglt

I had a meatball sized MCC on my left forearm removed in June 2024 at Mayo Clinic.

I am trying to get a sense of how many people had radiation after tumor removal.

Thank you.

- Theresa

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Yes , a course of radiation and immunotherapy seem to be recommended for most , I would get a second opinion, of course .

REPLY
lynnemerk1 | @lynnemerk1 | Jul 23, 2024
In reply to @lynn99 "My tumor on my nose, tripled in size in about three weeks and changed color. When..." + (show)
@lynn99

My tumor on my nose, tripled in size in about three weeks and changed color. When I had my surgery, they took out some lymph nodes on both sides of my neck. They did find some individual Merkel cell carcinoma cells in the area. I hope you can do your research and find a treatment center that you like. And get in quickly.

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Thanks Lynn! I am seeing the dermatologist today and am having a cat scan, so I feel better that things are moving quickly.

REPLY
lynn99 | @lynn99 | Jul 22, 2024
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

Jump to this post

Theresa, have you contacted your oncologist and gotten in to see him? Hopefully it is not MCC but it would be good to get it checked out. We have to be our own advocates. Maybe get another opinion about the radiation. Hang in there you’ve got this. Lynn

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