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.

rogermcintire | @rogermcintire | Dec 27, 2023
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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Just checking in to see how you are doing. I'm hoping well!!
I have completed five immunotherapy treatments using OPDIVO and as of yet no side effects. After fourteen radiation treatments to the left side of my face there are unpleasant but tolerable side effects.
The words, "This too shall pass" have taken on a special meaning to me!
Here's hoping your holiday season is filled with love and peace.

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rogermcintire | @rogermcintire | Dec 27, 2023
In reply to @penlandtr1 "Thank you for your message 🙏. I'm still waiting for everything to set in. I had..." + (show)
@penlandtr1

Thank you for your message 🙏. I'm still waiting for everything to set in. I had a tumor removed 2 years ago from my R forearm. It was confirmed as MCC. Then, about a month ago a lump the size of a tennis ball seemed to pop up over night. The biopsy was done and 4 of the 6 effected lymph nodes 4-5 cm and confirmed as MCC.

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I will be praying for you to have strength and peace as you go through this.
Please feel free to text me anytime, we are in this together.

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penlandtr1 | @penlandtr1 | Dec 26, 2023
In reply to @penlandtr1 "I'm finding it hard to find more current information about merkel cell carcinoma. It's traveling from..." + (show)
@penlandtr1

I'm finding it hard to find more current information about merkel cell carcinoma. It's traveling from my forearm and up into the lymphatic system under my right arm.

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I liv s in a small city in the Pacific NW. about 50 miles from Seattle. So far all that has been done is the ultrasound biopsy of the lymphnodes that have formed a little mass under my right arm. I'm not scheduled to see another doctor from Franciscan cancer center until the 8th of January. It doesn't feel right to wait that long but I'm not sure what more I can do at this point.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 26, 2023
In reply to @penlandtr1 "I'm finding it hard to find more current information about merkel cell carcinoma. It's traveling from..." + (show)
@penlandtr1

I'm finding it hard to find more current information about merkel cell carcinoma. It's traveling from my forearm and up into the lymphatic system under my right arm.

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Hello @penlandtr1 and welcome to Mayo Connect. I see that you are interested in connecting with others who have Merkel Cell Carcinoma and that @lbrockme and @rogermcintire have responded to you already. On Connect we have other discussion groups on the topic of Merkel Cell. If you would like to meet others on this journey, I'd encourage to read posts in the following discussion group:
https://connect.mayoclinic.org/discussion/merkel-cell-carcinoma-1/
On Mayo's/merkel-cell-carcinoma-1/ website, I found this information:
–Merkel Cell Carcinoma
https://www.mayoclinic.org/diseases-conditions/merkel-cell-carcinoma/symptoms-causes/syc-20351030
I would like to invite @dreams and @redneckchic501 to also share their experiences with you.

What type of treatment is being planning at this point?

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penlandtr1 | @penlandtr1 | Dec 26, 2023
In reply to @rogermcintire "Welcome to a club we had rather not belong to. I was diagnosed with Merkel under..." + (show)
@rogermcintire

Welcome to a club we had rather not belong to. I was diagnosed with Merkel under my left eye last July. I have had surgery to remove the cancer and two lymph nodes (one of which tested positive for Merkel). Currently I have five immunotherapy treatments completed and thirteen radiation sessions. I'm hopeful since the cancer was caught very early everything will be ok. If you would like to share information or to ask any questions, please feel free to do so.
I am an 81 year old male married sixty two years and overall in fairly good physical condition.

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Thank you for your message 🙏. I'm still waiting for everything to set in. I had a tumor removed 2 years ago from my R forearm. It was confirmed as MCC. Then, about a month ago a lump the size of a tennis ball seemed to pop up over night. The biopsy was done and 4 of the 6 effected lymph nodes 4-5 cm and confirmed as MCC.

REPLY
1 reply
rogermcintire | @rogermcintire | Dec 26, 2023
In reply to @penlandtr1 "I'm finding it hard to find more current information about merkel cell carcinoma. It's traveling from..." + (show)
@penlandtr1

I'm finding it hard to find more current information about merkel cell carcinoma. It's traveling from my forearm and up into the lymphatic system under my right arm.

Jump to this post

Welcome to a club we had rather not belong to. I was diagnosed with Merkel under my left eye last July. I have had surgery to remove the cancer and two lymph nodes (one of which tested positive for Merkel). Currently I have five immunotherapy treatments completed and thirteen radiation sessions. I'm hopeful since the cancer was caught very early everything will be ok. If you would like to share information or to ask any questions, please feel free to do so.
I am an 81 year old male married sixty two years and overall in fairly good physical condition.

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1 reply
Lynne Marie | @lbrockme | Dec 26, 2023
In reply to @penlandtr1 "I'm finding it hard to find more current information about merkel cell carcinoma. It's traveling from..." + (show)
@penlandtr1

I'm finding it hard to find more current information about merkel cell carcinoma. It's traveling from my forearm and up into the lymphatic system under my right arm.

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Try searching this Mayo connect site . The search function at the top showed me a previous group and comments.
I hope you find done helpful information soon. Praying for your next steps

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penlandtr1 | @penlandtr1 | Dec 25, 2023

I'm finding it hard to find more current information about merkel cell carcinoma. It's traveling from my forearm and up into the lymphatic system under my right arm.

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4 replies
hunter59 | @hunter59 | Nov 17, 2023
In reply to @hopeful33250 "Hello @hunter59 and welcome to Mayo Connect. I appreciate you sharing your journey with Merkel Cell..." + (show)
@hopeful33250

Hello @hunter59 and welcome to Mayo Connect. I appreciate you sharing your journey with Merkel Cell carcinoma. It sounds like your treatment was quite effective and that your medical team was able to assist with the side effects. You mentioned that the Keytruda affected your thyroid. Has the thyroid problem been treated with medication?

How are you feeling now?

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I was hypothyroid before I started treatment and was taking 100mcg daily and my numbers were good but after six months of treatment my tsh jumped from about 3 to over 20 so they increase the dosage now I’m taking 200 mcg but my tsh has returned to normal. I am feeling well and have been traveling quite a bit over the last year but must be sure to get back for treatment every three weeks.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 17, 2023
In reply to @hunter59 "I was diagnosed with stage 4 Merkel cell carcinoma in Jan 2022 when I developed a..." + (show)
@hunter59

I was diagnosed with stage 4 Merkel cell carcinoma in Jan 2022 when I developed a lump in my neck. Biopsy confirmed the type of cancer and further test indicated it spread to my liver as well. I started immunotherapy in March on Keytruda and have been getting this every three weeks since. The liver is clear today and the lump in my neck has reduced in size to where it cannot be felt but scans still show it is present. We have no idea where this cancer started never noticed anything on the skin. I previously had esophageal cancer and had my esophagus removed and stomach pull up along with chemo and radiation. That was seven years ago and there has been no recurrence. The Keytruda affected my thyroid but it is now under control and I have had no other side affects. So the plan is to continue on the Keytruda as long as I continue to tolerate it. Keep positive thoughts as treatment options are always improving outcomes as research continues.

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Hello @hunter59 and welcome to Mayo Connect. I appreciate you sharing your journey with Merkel Cell carcinoma. It sounds like your treatment was quite effective and that your medical team was able to assist with the side effects. You mentioned that the Keytruda affected your thyroid. Has the thyroid problem been treated with medication?

How are you feeling now?

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