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

My husband has stage 4 MCC and is doing well..... he was diagnosed in july 2021 diagnosed at stage 3B and he started with 30 rounds of of radiation ....and then jan 24 it had metastasized to the thoracic region .....and was then put on Avelumab every other week. It is scary in the beginning ....but the immune therapy has really good results ....I wish you all the best

@lynnemerk1, welcome. I moved your post about being newly diagnosed with merkel cell carcinoma to this existing discussion:
- Merkel Cell Carcinoma: I'd like to hear from others https://connect.mayoclinic.org/discussion/merkel-cell-carcinoma-1/

I did this so you can click the link to read previous comments and connect easily with members like @redneckchick501 @dreams @rogermcintire @sharris @wifedoro @penlandtr1 @mktz49 @jakefix82 and others who have experience with MCC and who understand that "panic" stage of a new diagnosis.

Lynne, what further testing has been scheduled to stage the cancer? How are you doing?

I was just diagnosed with merkel cell carcinoma, and I’m in a bit of a daze. I haven’t been staged, and I am just in the “panic” stage. Does anyone have good resources or suggestions to proceed? Thanks!

Sooo happy to hear this

thank you ....you are correct ....he had the radiation 30 treatments on Head neck for original diagnoses ....then when it spread to the thoracic lymph nodes he had another 30 rounds of radiation and then he started Avelumab ....immune therapy ....and his tumor was 12.7 cm ...now is 5.4 after the completion of radiation and 8 rounds of Avelumab....so we are hoping

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.

No worries, ramble on. Sometimes I find that it helps just to be able to ramble to people who understand MMCC. It's a lot to absorb and it helps to say it to people that understand.

My husband is on Avelumab immune therapy ...what it is called in Canada ...I believe it is the same as Keytruda. My husband receives treatment every 2nd week. He is doing really well on it ....he gets fatigue, and some stomach nerve issues where he 12.7 tumor in thoracic region around the aorta ....I hope you are ok on the keytruda ....it seems to be working well for him so far

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 .

Treatment is once every 3 weeks according to the doctors. He said that I will probably have this Treatment for the rest of my life.