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

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

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?

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!

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

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.

Hello Lynn99. I'm hoping you are doing well after your radiology appointment and feeling relief after having the bolster (I had to look up what that was) removed.
I will have immunotherapy for up to a year and I'm not sure what steps will be taken to determine if the treatments are working.
It has been nine days since my final radiation session and I'm seeing some improvements everyday - less soreness in mouth and tongue but I still cannot taste anything. I'm hoping the taste will return soon since I am someone who really likes their grub!
Take care of yourself and hang in there!

So I have a PET scan today, hoping it is negative. I start radiation next week on Wednesday.5 weeks. My nose is slowing healing. Have to keep it covered in public as it looks bad but it is healing. Hard to read as I have to hold my glasses above it. My energy isn’t as it shld be but I’m listening to my body and sleeping when I need it.
Roger glad you are seeing improvements after stopping radiation. Has your taste returned? Do you have any side effects from the immontherapy? I’m going to be referred to an oncologist who does immunotherapy here also.
Hanging in there! 🙂

Hi ,
Keeping my fingers crossed that you get the negative results. This is my 2nd round of radiation in the last 2 years. It's no fun but it does work well for MCC. Fatigue is a major factor with radiation. Keep listening to your body. It will tell you when you need to rest. All the best. Traci

Good morning Lynn! Great to hear from you and thanks for the updates on how you are doing.
I am hoping the PET scan is negative and will say an extra prayer that this will be so.
Keep on listening to your body and take good care of yourself. Have an extra helping of what you like and enjoy the special foods. I still cannot taste anything which makes eating a chore. This is difficult for me since I have always really enjoyed the 62 years of my wife's good cooking!
Most of the radiation side effects have improved and I have started back working out and I am feeling better every day.
I have had 7 immunotherapy infusions with no side effects. Thank Goodness for this and hopefully you will have no problems either. I'm receiving OPDIVO (nivolumab) every two weeks and it takes about 40 minutes to administer including the flush.
Keep on hanging in there, we both are in this for the long haul!

Hello Traci, glad to hear you are dealing with your second round of radiation with courage and determination. Amen to the treatments not being fun!
I am sure Lynn appreciates your sharing, I do.