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

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.

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

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 🙏

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 🙏

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?

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.

Thank you so much for sharing! I have Merkel that was found just under my left eye. Pet Scan showed no spread but when the site was removed along with two lymph nodes Merkel was in one of the nodes.
I have had one infusion using Nivolumab and radiation will begin within a few days.
I too have had Basil cell cancer removed from my nose and like you love the outdoors. Although I am an 81 year old male I'm not ready to cash it in just yet!
What to expect is a cause of concern and would appreciate any insight you would be willing to pass on.

I can't offer much on therapies after surgery to remove the cancer as my treatment has been limited to monitoring (a series of CT scans, x-rays and blood work every three months for the first two years just ended and now every four months for the next three years). We discussed radiation after the excision surgery but my cancer board decided after I was fitted with the mask for radiation that it was not needed because the second round of pathology on the tissue taken in the excision was completely clear, as was my lymph node, and the diameter of the original mass was just under the threshold for radiation for a stage 0. Somehow (fortunately) my dermatologist got the entire mass on the first try when he removed what he sent to the lab for the first biopsy and it hadn't had time to grow much. For what it's worth, I'm a 67 year old white male (the biggest patient group is older white males as I gather) but when I asked about chances of recurrence given my extensive history of melanoma and other assorted skin cancers, my doctors said that unlike the odds for recurrence of melanoma for me since I've already had two, there aren't enough data for Merkel Cell cases to draw any strong correlations or give odds on recurrence - hence the long schedule of follow-up scans, etc. I think the most frustrating part of this for me and I'm sure others is the uncertainty of typical outcomes, because of the limited research when compared to the literature on other skin cancer types. Good luck with your treatment!

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.