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

Hi. I’m a 72 year old male. I was diagnosed with Merkel cell on my right forearm 11 years ago. It just appeared as a bump under my skin. Luckily I already had a dermatologist appointment scheduled a week later. The biopsy revealed Merkel. Even more rare at that time, there was no specific treatment. I had a PET scan that showed a few affected lymph nodes under my arm. We did surgery almost immediately, followed by 30 radiation treatments. Other than some fluid buildup under my arm I had no other complications. The incision on my arm took almost a year to heal because of the radiation treatment I get scans every 3 months due to this and another cancer. No signs of any reoccurrence. I wish everyone diagnosed, the same good outcome I had. And RIP JB 🏝️

Hello Lucky Man! I was very happy to read your post regarding Merkel. I am an 81-year-old who was diagnosed with Merkel in early August. I had esophageal cancer caught early and removed four years ago and two years ago had prostate cancer removed robotically. I have to admit that Merkel has me concerned because of its aggressive nature.
I am currently undergoing immunotherapy every two weeks and had surgery to remove the cancer site (just under left eye) and two lymph nodes from my jaw area; twenty-eight radiation treatments are to begin next week. Merkel cells were found in one of the lymph nodes that was removed.
I believe the cancer was detected early so I am very positive but concerned.
Your post helps with the concern and I am very grateful you shared your situation.

Hello Elizabeth, just checking in to see how you are doing.

I was diagnosed with stage 4 Merkel cell carcinoma in Jan 2022 when I developed a lump in my neck. Biopsy confirmed the type of cancer and further test indicated it spread to my liver as well. I started immunotherapy in March on Keytruda and have been getting this every three weeks since. The liver is clear today and the lump in my neck has reduced in size to where it cannot be felt but scans still show it is present. We have no idea where this cancer started never noticed anything on the skin. I previously had esophageal cancer and had my esophagus removed and stomach pull up along with chemo and radiation. That was seven years ago and there has been no recurrence. The Keytruda affected my thyroid but it is now under control and I have had no other side affects. So the plan is to continue on the Keytruda as long as I continue to tolerate it. Keep positive thoughts as treatment options are always improving outcomes as research continues.

Amen to the "positive thoughts"! Thank you for sharing!

Hello @hunter59 and welcome to Mayo Connect. I appreciate you sharing your journey with Merkel Cell carcinoma. It sounds like your treatment was quite effective and that your medical team was able to assist with the side effects. You mentioned that the Keytruda affected your thyroid. Has the thyroid problem been treated with medication?

How are you feeling now?

I was hypothyroid before I started treatment and was taking 100mcg daily and my numbers were good but after six months of treatment my tsh jumped from about 3 to over 20 so they increase the dosage now I’m taking 200 mcg but my tsh has returned to normal. I am feeling well and have been traveling quite a bit over the last year but must be sure to get back for treatment every three weeks.

I'm finding it hard to find more current information about merkel cell carcinoma. It's traveling from my forearm and up into the lymphatic system under my right arm.

Try searching this Mayo connect site . The search function at the top showed me a previous group and comments.
I hope you find done helpful information soon. Praying for your next steps

Welcome to a club we had rather not belong to. I was diagnosed with Merkel under my left eye last July. I have had surgery to remove the cancer and two lymph nodes (one of which tested positive for Merkel). Currently I have five immunotherapy treatments completed and thirteen radiation sessions. I'm hopeful since the cancer was caught very early everything will be ok. If you would like to share information or to ask any questions, please feel free to do so.
I am an 81 year old male married sixty two years and overall in fairly good physical condition.