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

Hello to you! I am sorry to hear about your mom’s diagnosis. I will tell you my experience. I’m am now 64. When I was 60, I noticed tiny lump on the margin of my eyelid. I had sought medical help, 3 different medical providers didn’t think it was anything to sort about. A few months later it started to change and grow, so I had it biopsied and it was merkel cell cancer. This was December of 2019. In my research, I found out that it was quite rare and aggressive. My treatment was all done through Mayo Clinic in Rochester. They started by doing a blood test to see if I had made antibodies to the cancer. They also did a full body PeT CT to look for any cancer, which was negative. They tested my eye and face to see if cancer was present in my lymph nodes, which was negative. So the plan was: I had it surgically removed, which also removed about 9 mm of my eyelid, the cyst was only 3 mm wide, followed by 25 treatments of radiation to the eye lid and surrounding area, using proton beam. During 2021 and 2022 I had full checkups every three months. PeT CT, blood work and exams. I have been Merkel cell free since the radiation, but my dermatologist found melanoma on my arm in 2022 and had then I had it surgically removed. It had not spread so no more treatment necessary. I check my skin often now for changes and do not get direct sun exposure. I use sunscreen and hats! We love the outdoors, hiking and exploring so I still get outside but keep covered! All my providers at Mayo have been excellent!

Hi @redneckchic501, I add my welcome. I hope you saw the helpful post from @dreams.

What treatments are being suggested for your mom?

They just did surgery to remove it the lymph nodes on the right side of her neck and the next step is pinpoint radiation. I am so new to all of this the process of being a cancer patient/caregiver.

Oh wow! She noticed a small lump in her cheek and just thought it was a pimple. A year later it started growing fast and changing color. I saw it on her face and demanded her have it seen by a doctor. He had no idea what it was so he went to take it out and once he saw it he stopped sent off what he had taken out and a week later we found out it was MKC and we were scheduled with a specialist at UAMS in Arkansas. Closest one to us. He scheduled surgery after Ct and Pet scans and MRI’s she is 4 days post op. Once she heals completely from surgery they will start pinpoint radiation.

<p>I’m Stage 3 Merkel carcinoma and will meet with oncologist in two days</p><p>I’m just wondering what the side affects of immunotherapy are. I’m a healthy 81 year old male.<br />Also this is my first post.</p>

Welcome @rogermcintire, I moved your message to this existing discussion in the Neuroendocrine Tumors support group:
- Merkel Cell Carcinoma https://connect.mayoclinic.org/discussion/merkel-cell-carcinoma-1/

I did this so you can easily connect with members like @dreams @redneckchic501 @mkhighpoint @angieklima and others who can share their experiences with merkel cell carcinoma and immunotherapy.

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?

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.

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

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.

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.