1. < Neuroendocrine Tumors (NETs)

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 Neuroendocrine Tumors (NETs) Support Group.

wifedoro | @wifedoro | Jun 7 5:57pm

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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1 reply
wifedoro | @wifedoro | Jun 7 6:06pm
In reply to @penlandtr1 "I was diagnosed with MCC 2+ years ago in my R forearm. Tumor removed, all was..." + (show)
@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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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

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penlandtr1 | @penlandtr1 | Jun 7 6:18pm
In reply to @wifedoro "My husband was diagnosed with stage 3B merkel cell on his nose .....they removed it in..." + (show)
@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 .

Jump to this post

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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mktz49 | @mktz49 | Jun 11 1:38pm
In reply to @rogermcintire "Thank you so much for responding. I also had esophageal cancer three years ago and it..." + (show)
@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
wifedoro | @wifedoro | Jun 18 10:46am
In reply to @mktz49 "I have recently visited a specialist in MCC who told me that immunotherapy along with radiation..." + (show)
@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
mktz49 | @mktz49 | Jun 18 2:27pm
In reply to @wifedoro "thank you ....you are correct ....he had the radiation 30 treatments on Head neck for original..." + (show)
@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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lynnemerk1 | @lynnemerk1 | Jul 17 10:16pm

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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4 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 18 8:56am
In reply to @lynnemerk1 "I was just diagnosed with merkel cell carcinoma, and I’m in a bit of a daze...." + (show)
@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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wifedoro | @wifedoro | Jul 18 1:17pm
In reply to @lynnemerk1 "I was just diagnosed with merkel cell carcinoma, and I’m in a bit of a daze...." + (show)
@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!

Jump to this post

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

REPLY
wifedoro | @wifedoro | Jul 18 1:21pm
In reply to @penlandtr1 "I was diagnosed with MCC 2+ years ago in my R forearm. Tumor removed, all was..." + (show)
@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.

Jump to this post

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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