Merkel Cell Carcinoma: I'd like to hear from others

Howdy Y'all!
Sam Knapp here. I am a nearly 63 year old Merkel Cell Carcinoma Survivor and plan to be so all the rest of the days of my life!
I had originally gone to my Primary Care Doc for what I thought was a lipoma on my right forearm back in October of 2024. He poked and prodded, and then referred me for an ultra sound. The ultrasound indicated it was vascularized, so likely not a lipoma, which led to an MRI. While I was shuffling thru these exams, the bump was getting bigger and harder, and turning an angry red. MRI indicated a mass, and Radiologist recommended an excision for biopsy. As I was going thru these steps, I kept mentioning that I thought it was a lipoma, as I had previously had a large one (softball size) removed from my shoulder blade area some years prior.
In any case, I had the excision in January 2025, and then a late afternoon missed call from the surgeon. He left a "I will call you later so we can go voice to voice" message, prompting me to jump on the patient portal and read "positive for merkel cell carcinoma".
I did what most likely everyone on this chat did.... I said; say it with me, "What the h3!! is Merkel Cell Carcinoma?", followed by "oh S4it!" after a quick web search.
Fast forward: numerous office calls with surgeons, radiology, oncology/hematology, etc. I had baseline PET-CT, (diagnosed as stage 3, confirmed with needle biopsy/FNA) two Opdivo treatments (part of clinical trial) with no ill effects, a negative colonoscopy due to wall thickening, and another PET-CT which showed that Opdivo was being effective, so we continued treatments. 35 radiation treatments, and more Opdivo. I move from North Carolina to Florida, and more treatments back in Duke/Durham VA Facility.
I have new PET-CT and dose on 30 Dec 2025, and my oncology fellow calls me while I am in traffic in Jacksonville, coming home from the Sam's Club, saying congratulations, exam was all clear; no signs of disease.
What a heck of a gift to start the New Year, 2026 in the year of our Lord!
So today is 30 Jan. I had my January dose here in Jacksonville, and am scheduled monthly thru April, marking one year on the stuff, and then another PET-CT. All of this treatment has been through our Veteran's Health Administration, part of the VA. Great care, by the way....
I have an appointment with the Mayo Dermatology Team next week for the routine following/skin exams, and whatever else they may have up their sleeves.
Side Effects
Radiation: burns/hair loss in my right armpit (Axilla nodes positive), and collar bone area (supraclavicular nodes positive), but nearly resolved after 4 months.
Opdivo: none of the classic side's, but I have some hearing loss that we are monitoring. Immunotherapy drugs sometimes (very rarely) are oto-toxic. We'll see what that side journey holds.
A whirlwind, for sure!!
I share my story with you, and very deeply thank you all for sharing your stories. Common threads I see in all of our stories are of Faith in our Higher HQ (old military... I mean our God), a bit of fear of the unknown, hope, overcoming challenge, and fellowship.
I look forward to hearing and sharing in future.
Take care, and stay warm this weekend!
SJK

@Teresa: That is my story and I am sticking to it.

Howdy Y'all!
Sam Knapp here. I am a nearly 63 year old Merkel Cell Carcinoma Survivor and plan to be so all the rest of the days of my life!
I had originally gone to my Primary Care Doc for what I thought was a lipoma on my right forearm back in October of 2024. He poked and prodded, and then referred me for an ultra sound. The ultrasound indicated it was vascularized, so likely not a lipoma, which led to an MRI. While I was shuffling thru these exams, the bump was getting bigger and harder, and turning an angry red. MRI indicated a mass, and Radiologist recommended an excision for biopsy. As I was going thru these steps, I kept mentioning that I thought it was a lipoma, as I had previously had a large one (softball size) removed from my shoulder blade area some years prior.
In any case, I had the excision in January 2025, and then a late afternoon missed call from the surgeon. He left a "I will call you later so we can go voice to voice" message, prompting me to jump on the patient portal and read "positive for merkel cell carcinoma".
I did what most likely everyone on this chat did.... I said; say it with me, "What the h3!! is Merkel Cell Carcinoma?", followed by "oh S4it!" after a quick web search.
Fast forward: numerous office calls with surgeons, radiology, oncology/hematology, etc. I had baseline PET-CT, (diagnosed as stage 3, confirmed with needle biopsy/FNA) two Opdivo treatments (part of clinical trial) with no ill effects, a negative colonoscopy due to wall thickening, and another PET-CT which showed that Opdivo was being effective, so we continued treatments. 35 radiation treatments, and more Opdivo. I move from North Carolina to Florida, and more treatments back in Duke/Durham VA Facility.
I have new PET-CT and dose on 30 Dec 2025, and my oncology fellow calls me while I am in traffic in Jacksonville, coming home from the Sam's Club, saying congratulations, exam was all clear; no signs of disease.
What a heck of a gift to start the New Year, 2026 in the year of our Lord!
So today is 30 Jan. I had my January dose here in Jacksonville, and am scheduled monthly thru April, marking one year on the stuff, and then another PET-CT. All of this treatment has been through our Veteran's Health Administration, part of the VA. Great care, by the way....
I have an appointment with the Mayo Dermatology Team next week for the routine following/skin exams, and whatever else they may have up their sleeves.
Side Effects
Radiation: burns/hair loss in my right armpit (Axilla nodes positive), and collar bone area (supraclavicular nodes positive), but nearly resolved after 4 months.
Opdivo: none of the classic side's, but I have some hearing loss that we are monitoring. Immunotherapy drugs sometimes (very rarely) are oto-toxic. We'll see what that side journey holds.
A whirlwind, for sure!!
I share my story with you, and very deeply thank you all for sharing your stories. Common threads I see in all of our stories are of Faith in our Higher HQ (old military... I mean our God), a bit of fear of the unknown, hope, overcoming challenge, and fellowship.
I look forward to hearing and sharing in future.
Take care, and stay warm this weekend!
SJK

@Teresa: That is my story and I am sticking to it.

@rogermcintire

I'm so glad for your update! Great news, I'm sure you must be happy. How many treatments were you given? Were there many side effects that you dealt with?

Well, i am still here! The Chemo I received did the job. Don't give up!

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.

Hello @dfwgal and welcome to Mayo Connect. I appreciate you sharing about your sister's experience with Merkel Cell.

How is she feeling since her surgery earlier this month? Does she have much discomfort?

Hello
How are things going with your husband? Sounds like my 67 year old sister is having a similar experience. She had a sore on her upper left arm (where you get shots). Surgery removed it but she also had a positive lymph node. She met with the Radiation Oncologist 8/21/25 . Will have her planning session next week and then 28 radiation sessions. A pet scan and then see the oncologist after all that, probably in November and she will go from there. It feels like thing are progressing too slowly for such an aggressive cancer.
Where is your husband in his treatment. Praying we all get good news.