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

I have recently visited a specialist in MCC who told me that immunotherapy along with radiation was the most effective therapy .
I encourage you to ask your oncologist about it.

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.

My husband was diagnosed with stage 3B merkel cell on his nose .....they removed it in July 2021 with complications due to heart issues landing him on Life support ...but after 1 month in the hospital he was doing well. He then had 30 lymph nodes on Right side of his neck removed.... 1 showing merkel cell as well.
followed by 30 rounds of radiation .....then in Sept 2023 the seen on CT scan showed an enlarged lymph node in thoracic region (Left / centre towards back of Stomach) encasing the descending Aorta.....they watched that too long ....it went from 2.4 cm to 12.7 cm in 5 months ...had a biopsy that confirmed Pathological Merkel Cell ....which again was 30 rounds of radiation ....followed by at present ....Avelumab ....Immune therapy ....4 months following completion of radiation with 3 months of Avelumab the tumor has shrunk to 5.4 cm ...but now that the merkel cell has spread to a distant location ...I believe it is now Stage 4 ...and I am really worried...since Merkel cell is aggressive.....my sister in law is stage 4 Melanoma and My brother in law is stage 3 lung cancer ....all siblings ..to my husband who also survived prostate cancer 12 yrs ago ....sorry for the rambling and so much to take in .

I was diagnosed with MCC 2+ years ago in my R forearm. Tumor removed, all was good. Petscan was clear. January of this year BANG ! TUMOR via lymphnodes R Axillary. 36 rounds of radiation, again all was right with testing. No signs of the cancer. 2 weeks ago MMCC has advanced to my pancreas and some weird lymphnodes in the core of my body that they say can't be checked as they can't get to them via needle biopsy. My tumor DNA bloodwork has gone crazy high.
Has anyone ever been treated with Keytruda and how did it effect you. I start treatments on Monday, every 3 weeks. A bit nervous but hopeful. Would love to here any other experiences with this treatment. Best wishes for all.

Hello @penlandr1,

I see that you are interested to hear from others who have been treated with Keytruda. In a post above, @lenny48ca, mentions Keytruda. Here is a link to his post on May 20, discussing this: https://connect.mayoclinic.org/comment/1071523/.

Feel free to read his post and then ask him questions about his treatment.

You said that you were going to start Keytruda on Monday for three weeks. Will you be having the treatments every day?

I was diagnosed with MCC 2+ years ago in my R forearm. Tumor removed, all was good. Petscan was clear. January of this year BANG ! TUMOR via lymphnodes R Axillary. 36 rounds of radiation, again all was right with testing. No signs of the cancer. 2 weeks ago MMCC has advanced to my pancreas and some weird lymphnodes in the core of my body that they say can't be checked as they can't get to them via needle biopsy. My tumor DNA bloodwork has gone crazy high.
Has anyone ever been treated with Keytruda and how did it effect you. I start treatments on Monday, every 3 weeks. A bit nervous but hopeful. Would love to here any other experiences with this treatment. Best wishes for all.

I am a caretaker for my partner that has been diagnosed with MCC last month. Currently working on a treatment plan that should start in 2 weeks. She had basal and squamous in situ numerous times in the last 10 years. Never any skin issues that were deemed MCC in pathology. Suddenly had a golf ball size lump in axillary left lymph node. Biopsy revealed MCC. PET showed metastatic to left humerus bone only. Stage 4 diagnosis, and seems that the universal treatment for this is immunotherapy...not sure yet what medication will be recommended. Leaning toward Keytruda (pembrolizumab)....or Bavencio (avelumab). Has anyone taken these meds that would share their experience?

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 🏝️

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.