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

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.

Welcome @rogermcintire.

As you prepare for your upcoming appointment, I thought we could help you prepare a list of possible questions. Here's a few I found on Mayo Clinic's website:
What are my treatment options?
How will you check my response to treatment?
How likely is my condition to recur? What treatment options would be available in that case?
What follow-up tests will I need to monitor for recurrence?
I have other health conditions. How can I best manage them together?
Are there any restrictions that I need to follow?
Should I see a specialist? What will that cost, and will my insurance cover it?
Are there any brochures or other printed material that I can take with me? What websites do you recommend?

Roger, Do you already know that you will be getting immunotherapy as a treatment?