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

Thanks Roger, for sharing your story. Glad that you had no adverse side effects from the immunotherapy. How do they determine if it is working, do you know? I go in for my radiology set up apt tomorrow. And I have a bolster on my face that will get removed (yay). It’s over the skin graft placed on my nose and face during surgery. It’s pretty uncomfortable. Hopefully your side effects from radiation will fade away now that you are finished. Thanks for your prayers. God is helping me deal with all of this.

I’m slowly getting my strength back. Sleeping good with meds!

Hello Lynn99, I am Roger McIntire, also a Merkel Cell Carcinoma fighter. I'm 81 and in fairly good shape. My cancer was discovered on July 2nd of this year just under my left eye on the upper cheek. A total body PET scan on August 21st showed no spread to any area of the body.
I had surgery September 21 and learned there were Merkel cells in one of two lymph nodes on my left cheek that were removed.
I started immunotherapy on October 23 using Opdivo every two weeks. As of yet I have had no adverse side effects after seven treatments.
I also started 25 radiation therapy treatments December 5 and just finished on January 11th. The radiation is not pleasant but tolerable. I am still dealing with some of the radiation side effects such as sore tongue, throat, blistering on the left side of face and neck. The loss of taste is a real bother for someone who likes to eat like me, but I'm told it should return.
I have a very positive attitude and would be willing to share my experience thus far with you.
At this point I pray you have strength and peace to deal with whatever comes!

Hello @lynn99 and welcome to Mayo Connect. When you say, "It's pretty scary" most of us understand what you mean. Merkel Cell is a rare form of cancer and those of us who have experienced rare cancers understand the frightening aspect of this type of diagnosis.

As you can see, your post has been moved to this discussion group where you will meet others with the same diagnosis. Here you will meet @rogermcintire @penlandtr1 @dreams and @redneckchic501. I would encourage you to read the posts in this discussion group.

One of the first considerations, with any rare cancer diagnosis, is to consult with a specialist. If you do not live near a well-known specialist, often a virtual appointment can be made available. I mention this because not all general oncologists are trained or experienced in treating rare cancers. Mayo Clinic has three locations, where a virtual or in-person appointment might be a possibility for you. Here is a link to appointment information, http://mayocl.in/1mtmR63. If you have a cancer center of excellence nearby you can also contact them for an oncologist in the area who is experienced with Merkel Cell.

Here is some general information from Mayo Clinic's website about Merkel Cell Carcinoma which you might find helpful, https://www.mayoclinic.org/diseases-conditions/merkel-cell-carcinoma/symptoms-causes/syc-20351030

How are you feeling since your surgery, @lynn99?

I am 71 and newly diagnosed with Merkel Cell Carcinoma. I had a fairly large tumor removed from my nose last week. I discovered it at Thanksgiving, had a biopsy Dec21 and surg last week. Awaiting path reports. I’m looking at radiation treatments but not sure when and how many. I guess I’m looking for support and information. Any treatments work for people? It’s pretty scary. Thank you

Traci, my wife and I are hoping the very best for you. After recently completing 25 radiation treatments to the left side of my face I most certainly empathize with you having to endure another session of radiation.
I don't know what your lab results reveal but assume they are what is causing your anxiety. In my almost 82 years of life, I have found words provide little comfort and that only leaves a sincere hug, this is what my wife and I send to you.

Hi, I was first diagnosed with MCC 2 years ago with a tumor in my right forearm. All the test indicated that they got all of the cells that were affected by the cancer. Went 2 years and 1 week when a mass the size of a golf ball appears 🤔 in my R arm axillary lymph nodes. Approximately 6 lymphnodes are 3 cm or larger. Biopsy confirmed metastatic merkel cell carcinoma. I did 25 radiation therapy the first time. Starting 30 treatments on the 18th of this month. It's been a lot harder this time as it was made really clear what I was dealing with the first go round I'm finding it a lot harder to understand what is happening and where I am going from here. I got lab results today that have Ki67 MIB1 SQ Positive 80-90 %
Feeling a lot of anxiety and scared. MCC is so rare it's hard to find information and , I've found even harder to understand. That's why I'm on this group. It helps me to know other people's experiences and strengths. I was you all the best in your journey. Traci

There was a small purple pimple like place just under my left eye on the cheek and a biopsy was taken July 19, 2023. The biopsy results were obtained on August 2nd and tested positive for Merkel cell carcinoma. I met with the oncologist on August 9 and a full body PET scan was scheduled for August 21. The results showed no spread anywhere in the body.
I met with a plastic surgeon on September 5th and surgery was scheduled for September 21st and on September 18 met with a radiologist who recommended 25 radiation treatments to the left face area.
on August 21st surgery was conducted and lab results indicated Merkel cells were in one lymph node in my left cheek.
My first immunotherapy began October 23 using Nivolumab. After six sessions I have had no adverse side effects.
My first radiation was on December 5th and number 25 was completed on January 11th, 2024.
The radiation was not pleasant but tolerable. Blistering of left side of face and neck, sore throat, tongue and inner mouth along with loss of taste was experienced. A return to near normal is fully expected.
I have a positive attitude that the cancer was caught in the early stages and the treatments given and being continued will give me the best chance for an extended life until the good Lord calls me home!
I would be interested in learning from others who are dealing with this Merkel and sharing whatever of my experience that may be helpful.

Latest PET scan technology.....

I have bladder cancer, and scheduled for Chemo round #6 on January 17.

So far, I've had PET, PET/MRI, and PET/CT scans.

On January 5 I'm scheduled for the latest in technology, a PET/??? scan.

Depending upon risk factors as the results of that scan, they will determine whether to start radiation treatments, or go with bladder/prostate removal surgery.

I have a rare form of bladder cancer. Nationwide, an average of only 300 new cases are detected each year.

The VA hospital in Madison, WI averages only 1 case each year.

@penlandtr1, I can understand that you are concerned that you have to wait until January 8. Whenever there is a cancer diagnosis, waiting is the hardest part! As you live in a small city, I'm wondering how far it is to the nearest Cancer Center of Excellence. At least one consultation, either in-person or a virtual, might benefit you greatly as you seek the best treatment options.

Have you considered getting a second opinion (either virtual or in-person) at well-known cancer center?