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.

lostaglt | @lostaglt | Jul 21 8:16pm

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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1 reply
lostaglt | @lostaglt | Jul 21 8:25pm
In reply to @penlandtr1 "I was diagnosed with MCC 2+ years ago in my R forearm. Tumor removed, all was..." + (show)
@penlandtr1

I was diagnosed with MCC 2+ years ago in my R forearm. Tumor removed, all was good. Petscan was clear. January of this year BANG ! TUMOR via lymphnodes R Axillary. 36 rounds of radiation, again all was right with testing. No signs of the cancer. 2 weeks ago MMCC has advanced to my pancreas and some weird lymphnodes in the core of my body that they say can't be checked as they can't get to them via needle biopsy. My tumor DNA bloodwork has gone crazy high.
Has anyone ever been treated with Keytruda and how did it effect you. I start treatments on Monday, every 3 weeks. A bit nervous but hopeful. Would love to here any other experiences with this treatment. Best wishes for all.

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I had surgery to remove a MCC on my left forearm last month -- it was the size of a golf ball.

How large was your original tumor? How large a margin was removed?

My golf ball size tumor was removed along with a chunk -- 6"x3". Luckily - it was above the muscle so it basically looks like a shark bite taken on forearm / bicep.

Best wishes with Keytruda ... I'll keep up with your story.

- Theresa

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lostaglt | @lostaglt | Jul 21 8:31pm
In reply to @colleenyoung "Hi @redneckchic501, I add my welcome. I hope you saw the helpful post from @dreams. What..." + (show)
@colleenyoung

Hi @redneckchic501, I add my welcome. I hope you saw the helpful post from @dreams.

What treatments are being suggested for your mom?

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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

REPLY
3 replies
lynn99 | @lynn99 | Jul 22 4:58pm
In reply to @rogermcintire "Hello Lynn99, it is great to hear how you are doing! Most of my radiation side..." + (show)
@rogermcintire

Hello Lynn99, it is great to hear how you are doing! Most of my radiation side effects are dissipating and this week I complete my 20th infusion with no side effects. It appears the Merkel is in check but after four years my throat cancer returned. Fortunately, I was able to have surgery at Barnes hospital in St. Louis and it looks like I have been granted a reprieve in that the margins were clear after removing the cancer.
I'm still active playing golf, walking, working out and taking care of the yard. I hope you are enjoying your walks in the woods.
It was good advice you gave to Lynnmerk1. We are all in this together!

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Roger, good to hear your margins are clear and you are golfing! I am enjoying my walks in the woods and am slowly getting my energy back. I added weights a few weeks ago and biking when I can. Stay healthy.

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lynn99 | @lynn99 | Jul 22 5:15pm
In reply to @lynnemerk1 "Lynn, I do worry about getting this done quickly…I think my job—and my husband’s—will be to..." + (show)
@lynnemerk1

Lynn, I do worry about getting this done quickly…I think my job—and my husband’s—will be to research to find experts who will proceed as quickly as possible. Your story is inspirational!

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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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1 reply
lynn99 | @lynn99 | Jul 22 5:21pm
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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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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lynnemerk1 | @lynnemerk1 | Jul 23 5:55am
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.

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mktz49 | @mktz49 | Jul 23 4:20pm
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

Jump to this post

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

REPLY
dreams | @dreams | Jul 23 10:34pm
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

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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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 27 4:04pm
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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