Merkel cell-radiation effective on chest-new 2 cm spot on liver

Well I got my news early and the 2 cm spot on my liver is indeed Merkel cell. I have an appointment Monday to discuss immunotherapy and/or chemo. Any suggestions or advice on how to proceed since I do not have any Merkel cell specialists in my state of Indiana? Thank you in advance.

Thank you for your help

@kate777, I'm sorry to hear that your worry was confirmed at Merkel cell carcinoma. Immunotherapy is often used to treat Merkel cell carcinoma that has spread to other areas of the body.

Might getting a second opinion at Mayo Clinic be an option for you? You could develop a treatment plan with Mayo experts, who can work with your local oncologist to receive treatment closer to home.

@collenyoung, Thank you for your empathy and helpful advice. My insurance will not let me go out of state for appointments or treatment, so unless there were grants or other options that Mayo offers that is unfortunately not an option for me.

An MRI confirmed that I also have "salt and pepper" sized Merkel cell on my T-11 vertebra and right pelvis. I am relieved to hear you say that immunotherapy is often used for situations like mine, and I have my first infusion this Wednesday. I am doing my best to remain positive and hopeful. Thank you for your reply and I will keep you updated. I have to believe that this will work and that I have many years left in me!!!

It's been awhile, but I wanted to update each of you kind souls on my Merkel Cell diagnosis and treatment to give others hope and to NEVER stop fighting!! After the spot on my liver was found, an MRI indicated "salt and pepper" granule sized spots on my iliac (top of the pelvic bone) and on my T-11 vertebra. After 4 treatments of immunotherapy (Keytruda) every 3 weeks, my PET scan on 4/10 was NEGATIVE!! No sign of cancer!!! I am continuing my treatments and have now had 5 of 12. I just wanted to share and let others know that remission IS possible! @colleenyoung feel free to tag me in any future Merkel Cell posts, as I am happy to share my experience and be of help to any other Merkel Cell warriors. Thank you and KEEP ON FIGHTING!

Kate, I'm throwing confetti your way. No sign of cancer or no evidence of disease (NED) is always grand news. Remission is possible.

@kate777, you can be sure I will tag you when a new member joins worried about a new diagnosis of Merkel cell. Love the photo you added to your profile too. 🙂

Thank you so very much @colleenyoung !!!!!!

I was diagnosed with merkel cell when a spot came up on my knee. It looked like a blood clot and was real warm. So in July I went to my physician and he referred me to another doctor. Then that other doctor referred me to a tumor doctor. So by that time it had mestatic to my lymph nodes. So within 4 months I had 2 biopsies one on my knee and one on my lymph nodes. I went to surgery in November to have the tumor and lymph nodes extracted. The tumor on my knee had grew to 5 cm and 1 of the 3 lymph nodes was about ready to bust. I have been on opdivo and yervoy since January 2023. They made me real tired and yervoy made my bones ack. So after radiation on my knee and groin I was able to come off yervoy. I have a positive attitude and put everything in the lords hands. I go this month for my mri and cat scan.

Hello @lilbitnwv and welcome to the Merkel Cell support group on Mayo Connect. I'm glad that you found this forum. It helps to have encouragement and support whenever you are dealing with a rare form of cancer.

I appreciate that you have been proactive in following through with the recommended surgery and treatments. I'm sorry to hear that the chemo treatments resulted in so much fatigue.

Are you still experiencing a lot of fatigue?