1. < Melanoma & Skin Cancer

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 Melanoma & Skin Cancer Support Group.

rogermcintire | @rogermcintire | Mar 25 12:41pm

My concern for Merkel was justified since it became recurrent in December of 24. It spread rapidly on the left side of my face and neck and I was almost ready to give up on it thinking it had spread to a major organ. My oncologist suggested a PET scan and I agreed. The scan showed no spread to any major organ so I began chemotherapy on March 12. I have four hours on Wednesday, two hours on Thursday and Friday. It is beyond amazing how much the facial and neck tumors have shrunk. I take the second round next week so we shall see. I share this because there is always hope for tomorrow if you don't give up!

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tooltyme2 | @tooltyme2 | Mar 25 11:50am
In reply to @colleenyoung "@mytimetofly2, how did the appointment with the medical oncologist go? Does your husband have a treatment..." + (show)
@colleenyoung

@mytimetofly2, how did the appointment with the medical oncologist go? Does your husband have a treatment plan? How are you doing?

Jump to this post

Not much happened. He basically just did an update on the surgery date in which we have no idea yet.

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mytimetofly2 | @mytimetofly2 | Mar 24 8:15pm

Yes I will. Our appt is Friday at 9am.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 24 3:06pm
In reply to @mytimetofly2 "Thank you for asking:) We got incredible news!! My husband’s PET scan was negative for any..." + (show)
@mytimetofly2

Thank you for asking:) We got incredible news!! My husband’s PET scan was negative for any metastatic cancer! Surgically removing the lump on his forearm and the sentinel lymph node got rid of the Merkel cell. We were disappointed to hear that he’s not able to have immunotherapy to stop a reoccurrence. He will be having radiation but we don’t know what treatment will look like until we see radiation oncologist next week. We are feeling very blessed and grateful!

Jump to this post

What good news, @mytimetofly2! I look forward to hearing updates after you see the radiation oncologist next week. Will you post again and let me know what the treatment plans will be?

REPLY
mytimetofly2 | @mytimetofly2 | Mar 23 12:30pm
In reply to @colleenyoung "@mytimetofly2, how did the appointment with the medical oncologist go? Does your husband have a treatment..." + (show)
@colleenyoung

@mytimetofly2, how did the appointment with the medical oncologist go? Does your husband have a treatment plan? How are you doing?

Jump to this post

Thank you for asking:) We got incredible news!! My husband’s PET scan was negative for any metastatic cancer! Surgically removing the lump on his forearm and the sentinel lymph node got rid of the Merkel cell. We were disappointed to hear that he’s not able to have immunotherapy to stop a reoccurrence. He will be having radiation but we don’t know what treatment will look like until we see radiation oncologist next week. We are feeling very blessed and grateful!

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 22 9:47pm
In reply to @mytimetofly2 "I agree! It’s so hard waiting on things. We see the medical oncologist finally this Friday..." + (show)
@mytimetofly2

I agree! It’s so hard waiting on things. We see the medical oncologist finally this Friday and it will have been 2 months since my husbands diagnosis from the dermatologist. It does seem it would be handled a bit more expedited.

Jump to this post

@mytimetofly2, how did the appointment with the medical oncologist go? Does your husband have a treatment plan? How are you doing?

REPLY
2 replies
mktz49 | @mktz49 | Mar 18 9:38pm
In reply to @tooltyme2 "Hi, my name is Sharm. I had a cancer 21 yrs ago it was CLL. I..." + (show)
@tooltyme2

Hi, my name is Sharm. I had a cancer 21 yrs ago it was CLL. I had 7 months of chemo and then went into remission. Thinking I was in the clear, I was just diagnosed with Merkel cell carcinoma. I had a spot on my arm about the size of a pencil eraser. I showed it to my dr and he said keep an eye on it. 3 weeks later it was the size of a nickle. My Dr removed it not expecting it not to be cancer. So now I am in the slow process of a plastic surgeon and another Doctor trying to decide a time to make for my cancer. When you read that its a RARE AND AGRESSIVE cancer you would like to think that they would be a little more concerned. Now its a hurry up and wait.

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I'm certain that you will need radiation treatment and possibly more.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 17 6:08pm
In reply to @tooltyme2 "Hi, my name is Sharm. I had a cancer 21 yrs ago it was CLL. I..." + (show)
@tooltyme2

Hi, my name is Sharm. I had a cancer 21 yrs ago it was CLL. I had 7 months of chemo and then went into remission. Thinking I was in the clear, I was just diagnosed with Merkel cell carcinoma. I had a spot on my arm about the size of a pencil eraser. I showed it to my dr and he said keep an eye on it. 3 weeks later it was the size of a nickle. My Dr removed it not expecting it not to be cancer. So now I am in the slow process of a plastic surgeon and another Doctor trying to decide a time to make for my cancer. When you read that its a RARE AND AGRESSIVE cancer you would like to think that they would be a little more concerned. Now its a hurry up and wait.

Jump to this post

@tooltyme2
Hello Sharm and welcome to Mayo Connect,

I can certainly understand your frustration with waiting. That is the difficult part of a cancer diagnosis. Will surgery be the only treatment for you?

REPLY
mytimetofly2 | @mytimetofly2 | Mar 17 9:35am
In reply to @tooltyme2 "Hi, my name is Sharm. I had a cancer 21 yrs ago it was CLL. I..." + (show)
@tooltyme2

Hi, my name is Sharm. I had a cancer 21 yrs ago it was CLL. I had 7 months of chemo and then went into remission. Thinking I was in the clear, I was just diagnosed with Merkel cell carcinoma. I had a spot on my arm about the size of a pencil eraser. I showed it to my dr and he said keep an eye on it. 3 weeks later it was the size of a nickle. My Dr removed it not expecting it not to be cancer. So now I am in the slow process of a plastic surgeon and another Doctor trying to decide a time to make for my cancer. When you read that its a RARE AND AGRESSIVE cancer you would like to think that they would be a little more concerned. Now its a hurry up and wait.

Jump to this post

I agree! It’s so hard waiting on things. We see the medical oncologist finally this Friday and it will have been 2 months since my husbands diagnosis from the dermatologist. It does seem it would be handled a bit more expedited.

REPLY
1 reply
tooltyme2 | @tooltyme2 | Mar 16 12:04pm

Hi, my name is Sharm. I had a cancer 21 yrs ago it was CLL. I had 7 months of chemo and then went into remission. Thinking I was in the clear, I was just diagnosed with Merkel cell carcinoma. I had a spot on my arm about the size of a pencil eraser. I showed it to my dr and he said keep an eye on it. 3 weeks later it was the size of a nickle. My Dr removed it not expecting it not to be cancer. So now I am in the slow process of a plastic surgeon and another Doctor trying to decide a time to make for my cancer. When you read that its a RARE AND AGRESSIVE cancer you would like to think that they would be a little more concerned. Now its a hurry up and wait.

REPLY
3 replies
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