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.

buildertom | @buildertom | Jul 20, 2024
In reply to @lynnemerk1 "I was just diagnosed with merkel cell carcinoma, and I’m in a bit of a daze...." + (show)
@lynnemerk1

I was just diagnosed with merkel cell carcinoma, and I’m in a bit of a daze. I haven’t been staged, and I am just in the “panic” stage. Does anyone have good resources or suggestions to proceed? Thanks!

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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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2 replies
lynnemerk1 | @lynnemerk1 | Jul 20, 2024

I’m a newbie, female,71 years young, and I just talked to my ENT doctor about my Merkel diagnosis. He’s getting the ball rolling for a ct scan and surgery on my nose. He’s going to take a big chunk out (my wording, not his) and then I’ll have a skin flap and all the radical stuff. There goes my modeling career! Any suggestions or Support is appreciated!

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2 replies
mktz49 | @mktz49 | Jul 19, 2024
In reply to @elizabethc0394 "Hi - sorry to hear that. I, too am Stage 3 Merkle cell carcinoma, diagnosed in..." + (show)
@elizabethc0394

Hi - sorry to hear that. I, too am Stage 3 Merkle cell carcinoma, diagnosed in April.

I am 57 year old woman - survived breast cancer in 2015. I am otherwise healthy and very active. I wasn't sick one day with the chemo I received. This immunotherapy has made me very sick. I started a two drug (IPI & Nevo) regimen immediately after diagnosis. I didn't get sick until after the third treatment, pancreatitis and colitis. This forced me to stop the cancer treatment until the steroids (really high dose prednisone could get it under control)
After more than 3 months, I finally received another immunotherapy treatment since my pancreas numbers were close enough to normal. Yikes, right back to pancreatitis. Back on prednisone 🙁

This is my first post as well.

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So sorry to hear this .

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Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Jul 18, 2024
In reply to @lynnemerk1 "I was just diagnosed with merkel cell carcinoma, and I’m in a bit of a daze...." + (show)
@lynnemerk1

I was just diagnosed with merkel cell carcinoma, and I’m in a bit of a daze. I haven’t been staged, and I am just in the “panic” stage. Does anyone have good resources or suggestions to proceed? Thanks!

Jump to this post

Hi @lynnemerk1 . You couldn’t just get normal skin cancer like the rest of us? You had to get a rare and special kind? Oh well. Anyway I found several articles on mayoclinic.org website search engine that might interest you. In the meantime perhaps one of the seven Merkel cell patients in the world might come forward with some specific help. Sorry I’m not much help but I did read if you smile, the cancer isn’t as noticeable.

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wifedoro | @wifedoro | Jul 18, 2024
In reply to @penlandtr1 "Treatment is once every 3 weeks according to the doctors. He said that I will probably..." + (show)
@penlandtr1

Treatment is once every 3 weeks according to the doctors. He said that I will probably have this Treatment for the rest of my life.

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my husband is receiving his Avelumab every 2nd week ....and will be on it i believe the rest of his life as well .

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wifedoro | @wifedoro | Jul 18, 2024
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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Keytruda is an immune therapy ....My husband is MMCC and on Avelumab (Bovencia) or some spelling like that .....he is doing well ....he too had it in the thoracic region wrapped around the ascending aorta ...and was 12.7 cm ....and after 3 months of avelumab ....it shrunk to 5.4 cm ....huge difference ....all the best

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wifedoro | @wifedoro | Jul 18, 2024
In reply to @lynnemerk1 "I was just diagnosed with merkel cell carcinoma, and I’m in a bit of a daze...." + (show)
@lynnemerk1

I was just diagnosed with merkel cell carcinoma, and I’m in a bit of a daze. I haven’t been staged, and I am just in the “panic” stage. Does anyone have good resources or suggestions to proceed? Thanks!

Jump to this post

My husband has stage 4 MCC and is doing well..... he was diagnosed in july 2021 diagnosed at stage 3B and he started with 30 rounds of of radiation ....and then jan 24 it had metastasized to the thoracic region .....and was then put on Avelumab every other week. It is scary in the beginning ....but the immune therapy has really good results ....I wish you all the best

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 18, 2024
In reply to @lynnemerk1 "I was just diagnosed with merkel cell carcinoma, and I’m in a bit of a daze...." + (show)
@lynnemerk1

I was just diagnosed with merkel cell carcinoma, and I’m in a bit of a daze. I haven’t been staged, and I am just in the “panic” stage. Does anyone have good resources or suggestions to proceed? Thanks!

Jump to this post

@lynnemerk1, welcome. I moved your post about being newly diagnosed with merkel cell carcinoma to this existing 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 to read previous comments and connect easily with members like @redneckchick501 @dreams @rogermcintire @sharris @wifedoro @penlandtr1 @mktz49 @jakefix82 and others who have experience with MCC and who understand that "panic" stage of a new diagnosis.

Lynne, what further testing has been scheduled to stage the cancer? How are you doing?

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lynnemerk1 | @lynnemerk1 | Jul 17, 2024

I was just diagnosed with merkel cell carcinoma, and I’m in a bit of a daze. I haven’t been staged, and I am just in the “panic” stage. Does anyone have good resources or suggestions to proceed? Thanks!

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4 replies
mktz49 | @mktz49 | Jun 18, 2024
In reply to @wifedoro "thank you ....you are correct ....he had the radiation 30 treatments on Head neck for original..." + (show)
@wifedoro

thank you ....you are correct ....he had the radiation 30 treatments on Head neck for original diagnoses ....then when it spread to the thoracic lymph nodes he had another 30 rounds of radiation and then he started Avelumab ....immune therapy ....and his tumor was 12.7 cm ...now is 5.4 after the completion of radiation and 8 rounds of Avelumab....so we are hoping

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Sooo happy to hear this

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