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

Posted by redneckchic501 @redneckchic501, Feb 9, 2023

I am new here, and just last month my mom was diagnosed with Merkel Cell. She had a large tumor on her face. I am looking for the Merkel Cell group to get more information and hear others stories. I know Merkel Cell Carcinoma is a very rare form of skin cancer, so I know there may not be many in the group. Any help would be greatly appreciated!

Interested in more discussions like this? Go to the Melanoma & Skin Cancer Support Group.

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Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Jul 18, 2024
In reply to @lynnemerk1 "I was just diagnosed with merkel cell carcinoma, and I’m in a bit of a daze...." + (show)
Profile picture for lynnemerk1 @lynnemerk1

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!

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Hi @lynnemerk1 . You couldn’t just get normal skin cancer like the rest of us? You had to get a rare and special kind? Oh well. Anyway I found several articles on mayoclinic.org website search engine that might interest you. In the meantime perhaps one of the seven Merkel cell patients in the world might come forward with some specific help. Sorry I’m not much help but I did read if you smile, the cancer isn’t as noticeable.

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wifedoro | @wifedoro | Jul 18, 2024
In reply to @penlandtr1 "Treatment is once every 3 weeks according to the doctors. He said that I will probably..." + (show)
Profile picture for penlandtr1 @penlandtr1

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.

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my husband is receiving his Avelumab every 2nd week ....and will be on it i believe the rest of his life as well .

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wifedoro | @wifedoro | Jul 18, 2024
In reply to @penlandtr1 "I was diagnosed with MCC 2+ years ago in my R forearm. Tumor removed, all was..." + (show)
Profile picture for penlandtr1 @penlandtr1

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.

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Keytruda is an immune therapy ....My husband is MMCC and on Avelumab (Bovencia) or some spelling like that .....he is doing well ....he too had it in the thoracic region wrapped around the ascending aorta ...and was 12.7 cm ....and after 3 months of avelumab ....it shrunk to 5.4 cm ....huge difference ....all the best

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wifedoro | @wifedoro | Jul 18, 2024
In reply to @lynnemerk1 "I was just diagnosed with merkel cell carcinoma, and I’m in a bit of a daze...." + (show)
Profile picture for lynnemerk1 @lynnemerk1

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!

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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

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 18, 2024
In reply to @lynnemerk1 "I was just diagnosed with merkel cell carcinoma, and I’m in a bit of a daze...." + (show)
Profile picture for lynnemerk1 @lynnemerk1

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!

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@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?

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lynnemerk1 | @lynnemerk1 | Jul 17, 2024

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!

REPLY
4 replies
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mktz49 | @mktz49 | Jun 18, 2024
In reply to @wifedoro "thank you ....you are correct ....he had the radiation 30 treatments on Head neck for original..." + (show)
Profile picture for wifedoro @wifedoro

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

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Sooo happy to hear this

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wifedoro | @wifedoro | Jun 18, 2024
In reply to @mktz49 "I have recently visited a specialist in MCC who told me that immunotherapy along with radiation..." + (show)
Profile picture for mktz49 @mktz49

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.

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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

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1 reply
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mktz49 | @mktz49 | Jun 11, 2024
In reply to @rogermcintire "Thank you so much for responding. I also had esophageal cancer three years ago and it..." + (show)
Profile picture for rogermcintire @rogermcintire

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.

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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.

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1 reply
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penlandtr1 | @penlandtr1 | Jun 7, 2024
In reply to @wifedoro "My husband was diagnosed with stage 3B merkel cell on his nose .....they removed it in..." + (show)
Profile picture for wifedoro @wifedoro

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 .

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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.

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