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

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.

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!

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.

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.

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 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.

I recently completed 25 radiation treatments for Merkel that first appeared on my left cheek under the left eye. Surgery removed the cancer area and one lymph node with Merkel cells. I'm receiving OPDIVO immunotherapy infusions every two weeks and after eight treatments I have had no adverse side effects.
I will have a CT scan in March.
It is good news to hear of your clear PET scan and gives me positive thoughts as to my prognosis! Thanks for sharing!

I wish you a clear scan in March.
Stay positive, I know it can be difficult at times.

Hi All,
It's always great to hear about positive feedback from MCC. It can be very difficult sometimes to stay positive with this type of cancer. It is a (sneaky bas#^rd) Sorry!!
Sometimes it gets the better of me. I find that I go through good Days and bad. Yesterday was a bad one. Depression is something I've never had to deal with until now. My first round of radiation went well, no major side effects as it was focused on my right forearm. This time it's more focused on my upper body core and the side effects are a lot harder. (Nauseous, fatigue, headaches,.
I'm done ranting now. This is my only outlet with understanding. Hope everyone has a great weekend. 👍

I so understand, never have I had anxiety, since I was diagnosed, I started getting anxiety attacks after the first year. I called it going down the rabbit hole.
This cancer is very rare, mine was even more rare because it was not in the upper torso, it was in my left butt cheek and never made it to surface (which is a good thing) I guess.
Every time I have my PET scan and patiently wait for the response. I’m happy it has been negative all this time, I know I’m not out of the woods yet.
I try very hard to stay positive, (do have my breakdowns) just don’t want to stay there too long.
Keep positive.