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

I was diagnosed with Merkel Cell Carcinoma August of 2020
All I heard was very rare or never heard of it.
I had two surgeries, one to remove the MCC and the other to remove the lymph nodes in my upper thigh. Had 5 weeks of radiation.
Just had my 4 PET scan, came back clear.

When I responded to you last I had forgotten it was your Mom who had Merkel. I'm sorry for the error. How is your Mom doing?

I have Merkel cell carcinoma and today had my 8th immunotherapy infusion using OPDIVO. The treatments are every two weeks and no adverse reactions thus far.
Wishing you the best and pray your PET scan will be clear.

Has any member of the group been treated with immunotherapy for squamous cell carcinoma ?
Been recently diagnosed and will have a PET scan in a few weeks to check for possible spread. Thanks, in advance, for any replies.

Hey Lynn, great news regarding your PET scan, I know that is a big relief!
I will have you in my prayers during the 25 radiation treatments. The sessions are not pleasant but tolerable and yes, they do go by quickly. I promise you will meet some great folks as you go through the process.
My side effects such as sore throat and tongue didn't really start until just after the 9th treatment. Your medical caregivers will tell you how to deal with the effects. One medication they prescribed for me was Gabapentin 300mg just before bedtime. This helped with any pain and I think helps me sleep. I also used Magic Mouthwash (prescription required) which really helped with the mouth soreness.
I was somewhat fatigued during the treatment period but not really too bad, I walked my dog but didn't do the hard workouts maybe I was just slacking off. lol
The loss of taste has resulted in me losing weight because I can't taste anything. Eating is a challenge. So today and tomorrow eat up my friend and especially your favorite foods! By the way I am drinking the energy drinks with high protein.
Lynn you definitely have my support and prayers as you go through these procedures. Keep in touch and may God bless you and give you peace!

Thanks Roger and Traci. My PET scan was good which was a big relief. My nose is healing and neck incisions. I start radiation treatments on Wednesday, 25 treatments. 5 weeks will go fast, right?? lol. Roger, good to hear you are working out again. I’m trying to walk outside everyday. It helps with my mood too. Love when I can walk in the woods. Were you able to do any exercise during your treatments? My energy isn’t what it was before all of this. What helped with the mouth side effects for you? Thanks for your support.

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.

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!

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

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! 🙂