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

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.

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.

Thanks for your story! I had a biopsy done on a small bump on my nose a few days ago. Waiting for results, but my dermatologist, who professionally can’t make a diagnosis yet, casually asked me about my late aunt’s Merkel Cell cancer (it’s in my chart as family medical history) after the biopsy. I think she suspects that’s what this might be. I’m currently 75, have had skin checks yearly since age 50, though am now going every 3 months since I had surgery for stage 1a melanoma on
my leg last October. I also had basal cell 15 years ago on the same side of my nose where this non-bleeding bump was just biopsied. The bump isn’t at all like the basal cell lesion. Anyway, I’m trying to prepare myself for a possible MCC diagnosis. My aunt was diagnosed at age 92 - she was in good health, played golf everyday. Unfortunately, her dermatologist discouraged her from radiation, saying she was too old and she’d lose her teeth (her MCC was on her chin). She eventually insisted on radiation and managed through it, but it was too late in the disease process to help her. So, if I’m diagnosed and I end up having to have radiation, I don’t know how to best prepare. I live alone without family around and I don’t want to ask friends to stay with me. I have slight balance issues (don’t require a cane or walker yet, but am a fall risk obviously). I’m leaning toward temporary respite care at a local assisted living if I need radiation, but it’s pricey (I do have the funds, but prefer not to spend them if not necessary). Can you tell me how you managed with radiation - do you think I would be better off in respite care with help around if I need radiation? Paying for an in-home health aide is rather costly and they don’t do 24 hr shifts. Thanks.