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Merkel Cell Carcinoma: I'd like to hear from others
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!
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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.
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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3 ReactionsMy 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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1 ReactionMy 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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3 ReactionsTreatment 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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1 ReactionHello @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.
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1 ReactionThanks 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.
Thank you for sharing your story. Dorky or not, you’re being very cautious about preventing skin cancer from returning and also modeling to others how to be careful. I had a Merkle Cell tumor removed from my eyelid, followed by radiation in 2020. The surgery combined with radiation has made my eyelid quite tight so it rubs on my eyeball, which is painful. I found wearing a Band-Aid contact lens helps protect my eyeball from the lid rubbing on it. I’ve also gradually discovered a combination of four different eyedrop medications that help with pain and swelling. when I’m outside, which is my favorite place to be, do, I wear a large sun hat, combined with ski goggles, even in the summer. I have had a few people ask me, “what’s with the goggles?” This question, indirectly, allows me to explain my health and skin cancer prevention. Currently, I am being monitored twice a year for skin cancer. I go to Mayo Clinic in Rochester. I see a dermatologist twice a year, and will be having my second three dimensional imaging done since Merkel Cell was removed. I had one melanoma surgery which was caught early and was completely removed from my left arm. Oncology has now graduated me to one time here for a CAT scan, chest neck and head. I am so thankful that I have gone far in life without Merkel returning, however, it is always in the back of my mind my mind. I’m very thankful for this forum and look forward to everyone’s support. (Here is a picture of me last week while hiking in one of the state parks. Kind of goofy, but I thought the limestone was so interesting.)
Welcome, @mrsdit. Indeed. To help you meet other members living with merkel cell carcinoma, I moved your message to this existing discussion in the Neuroendocrine Tumors (NETs) support group:
- Merkel Cell Carcinoma: I'd like to hear from others
https://connect.mayoclinic.org/discussion/merkel-cell-carcinoma-1/
Click the link to connect with Merkel cell carcinoma members like
@redneckchic501 @dreams @rogermcintire @mkhighpoint @sharris @elizabethc0394 @angieklima @luckyman51 @hunter59 @penlandtr1 @lynn99 @gouy @ablanton123 @kate777 @lenny48ca and others.
@mrsdit, is this a new diagnosis for you? How are you doing?
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