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

Hello @maryluph1953

I was thinking about you and wondering how your appointment went today. Did you get information about your plan for chemo? I hope you feel confident about the treatment plan.

Will you post an update when you have an opportunity?

Hello Mary, I'm Roger, 82 year old male, married 63 years and diagnosed with Merkel in August 2023. It showed up as a purple-colored small sore under my left eye. I had surgery to the left side of my face and the area removed with very little scaring. Merkel cells were found in a lymph node in the cheek so that moved it to Stage Three. I underwent 25 radiation treatments ending January 11th, 2024, and 22 immunotherapy infusions using OPDIVO.
The radiation was not pleasant and resulted in damaged salivary glands and tastes buds still not functioning properly but there has been no spread of the Merkel according to PET scans.
After 22 infusions there were complications that caused fluid buildup in both lungs. Immunotherapy was ceased and I am still undergoing steroid and antibiotic treatment that appears to be improving my breathing and oxygen levels.
There are difficulties in dealing with this rare cancer but the good news is I am still grateful to have life and love and beauty. Every day we have is a gift and there are folks who will go through it with you so you will never be alone.
Let me know if you have any questions.
Sending you hugs.

Thank you for sharing your story. Wishing you many more years! God Bless!

Hello. It's wonderful to hear that you've been living with the Merkel Cell for 11 years. Like you, but on his left arm just below his elbow, my brother-in-law noticed a bump in April of 2024. He didn't go get it checked out until August 2024, where it had tripled in size, and was growing very aggressively. They started infusions, where it wasn't reducing it's size at all! In October it was the size of a grapefruit, and very disgusting to see, however; the doctor's still hadn't scheduled surgery. So, he got another opinion, and was scheduled for surgery just before Christmas.
The chunk of flesh that was removed from his arm was shocking. Also, they had to do a couple skin graphs from the top of his thigh which he complained was more painful than the mass itself. The mass got to the point of continually bleeding just before his surgery. I guess I don't understand why they disfigured his arm instead of removing it at the elbow, because it still looks like the mass is still present? He is 70 years old but would like to live the remaining days of his life cancer free. I pray that his recovery is quick and pain free, but the lack of cases for this rare cancer doesn't offer very much hope of it Not returning to other parts of his body. I'm hoping any and all information shared could help in the research. God Bless all those suffering from this cancer.

Hello everyone
My name is Bahar and my father was diagnosed with MCC 5 years ago. It was a little nodule over his knee without lymph node involvement. He had an extensive surgery and nodal dissection and 30 sessions of radiotherapy afterward. Regular follow up was done and everything was fine until 2 weeks ago that for checking up his BPH, an abdominal sonography was done and showed 2 metastatic lesions which the biopsy is in favor of MCC met. I'm so devastated about prognosis as I'm a doctor and can't help my self about disease coarse.
He has "churg estrauss vasculitis" for over 20 years and recieves immunosuppressive medications. I'm wondering if he can use immunotherapy or not
I read all of comments in here and really appreciate this community
Prayers and love

I was diagnosed stage 3 merkle cell found in my lymph nodes . No skin cancer at all . I did Keytruda for a few months . It killed my thyroid. Both knees swelled so bad they had to be drained and got short of breath . Then I got off Keytruda . I then developed pancreatitis which was horrible pain . I was on Steroids for months . Thyroid pill for life . Diabetes meds as well . I did radiation also. Months out now and pet scan is clear . I get pet scan every three months so fingers crossed this mess is all behind me . Keytruda worked but it was rough. I only took 2 double dose and 1 single dose . It sneaked up on me with side effects. Side effects continued for 6 months off Keytruda . Best of luck

@bahar, was metastases confirmed? What treatment was recommended for you father?

My husband is taking Keytruda following chemotherapy for NSCLC. He has developed Diabetes 2. Thus far Jardiance and Metformin had not brought it under control.

Did your diabetes resolve after stopping Keytruda?

My blood sugar was raised by the steroids . I have always been borderline diabetic. So I now take 5 mg Mounjaro and it has got it under control.

My husband was diagnosed with MCC on Jan 22, 2025 by his dermatologist. He had a small raised lump on his forearm that was excised along with a sentinel axillary lymph node on Feb 25th by a surgical oncologist. Lymph node was positive so he’s going for PET scan next week with first medical oncology appt a couple days later. I’m a RN so I’ve been reading a lot and I’m feeling pretty fearful quite honestly. Doesn’t sound like good mortality rate for those with metastatic cancer. How far it has spread will show up on PET scan so that will be a big day. It will have been 2 month from first diagnosis to first medical oncologist appointment to discuss treatment. I’m so frustrated this cancer has had two months to grow and spread before any treatment. My husband is 67 and in good health. I pray that immunotherapy will help him get rid of the cancer. I’m not ready for him to be the 52% that are dead in 5 years. Gosh I hope he’s got better odds than that.