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

I just found this group and read the comments. Because this is such a rare cancer, I thought I'd add my story for what it's worth. I've just had my latest check-up two years out from finding out I had Merkel Cell - a little purple spot on my forehead that my dermatologist did not at first think anything of. I have been going in two or three times a year for dermatologist sessions for about ten years as I've had several instances of melanoma, squamous and basal cell carcinomas - probably from years of sailing. I didn't like the purple bump on my forehead and asked him to remove it more out of vanity than concern, but he was happy to send it in for a biopsy and found out it was serious. He told me he hadn't seen one in twenty years of practice and he sent me immediately to MD Anderson for treatment. Everyone here has experienced or knows about what's next with Merkel Cell - lots of doctors and excision surgery followed by decisions about follow-on therapies. I was terrified after I read up on what Merkel Cell was all about. The MD Anderson folks were really great about calming me down and dealing with what I needed. I was VERY lucky as the excision surgery and sentinel lymph node removal showed that I had gotten treatment early enough to be "stage 0" (in situ) and the very large incision site healed very well and ended up looking like an extra frown line on my face. Even with that, I am still going back to MD Anderson regularly for a CT scan and a chest x-ray and blood work to monitor things. This will continue this for three more years minimum they say. My dermatologist still talks about my case with me when I go back for my regular 4 month check up because it is so rare. Bottom line, I think, is to get regular exams but also be your own advocate. If you see something on your skin that you are worried about, get it removed and get a biopsy. There are worse things than finding out it's nothing after the lab takes a look. I also have become really really vigilant about limiting outdoor exposure (no more sailing) sun screen, sun glasses (it can appear in eyes too), hats and fishing shirts with long sleeves when I go outdoors. I look like a dork in the pool when I'm with my grandkids (and even then I sit under an umbrella mostly), but I'm alive and that's a fair trade in my book. I have real empathy for people going through this and appreciate finding this group. I wish everyone the best.

The first infusion went well with no side effects as of yet.
I’ve been fitted for radiation treatments but had to have a molar removed that must heal before starting radiation.
Thanks for getting back to me!!

Hi Roger, you're in the right place to connect with other members living with Merkel cell carcinoma like @redneckchic501 @dreams @elizabethc0394 and others.

How did the first infusion of Nivolumab go? And the radiation prep? Have you started daily radiation now?

Thank you

I’m having some difficulty figuring out how all this works but I would like to interact with some folks who are stage three Merkel. I start the radiation preparation on the 23 of October in the morning and in the afternoon my first infusion Nivolumab. Thanks 🙏

@elizabethc0394, will you be having more immunotherapy treatments or has a different treatment plan been suggested?

Thank you so much for responding. I also had esophageal cancer three years ago and it was caught early. Then two years ago I had prostrate cancer surgery.
Some how this Merkel has me much more concerned. So thanks again for sharing with me.

Hi - sorry to hear that. I, too am Stage 3 Merkle cell carcinoma, diagnosed in April.

I am 57 year old woman - survived breast cancer in 2015. I am otherwise healthy and very active. I wasn't sick one day with the chemo I received. This immunotherapy has made me very sick. I started a two drug (IPI & Nevo) regimen immediately after diagnosis. I didn't get sick until after the third treatment, pancreatitis and colitis. This forced me to stop the cancer treatment until the steroids (really high dose prednisone could get it under control)
After more than 3 months, I finally received another immunotherapy treatment since my pancreas numbers were close enough to normal. Yikes, right back to pancreatitis. Back on prednisone 🙁

This is my first post as well.

Hello to all.
Colleen,
Those are excellent questions!
Having a diagnosis of cancer is shocking, having support from thus grouo and and these questions surely helps, as we don’t know what to ask or expect.
Thank you.
Dreams

I was scheduled for direct beam radiation to cancer site but that was before surgery where a lymph node showed Merkel cell invasion. I meet with the oncologist in two days. She indicated earlier that immunotherapy would be utilized.