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.

lenny48ca | @lenny48ca | May 20 9:36am

Keytruda immunotherapy has been a game changer for me and many others with MCC. Make sure she looks into this therapy before considering anything else.

dreams | @dreams | May 21 8:42pm

I am so thrilled and thankful that Keytruda is working to shrink the tumors. Thank you for sharing your experience. May you be blessed with many more days!

rogermcintire | @rogermcintire | May 22 9:44am

Yesterday I finished my 16th infusion of OPDIVO. I have had no adverse side effects and so far my Merkel has not returned! Unfortunately, my esophagus cancer from four years ago has returned. Not sure yet what course of treatment will be available but whatever happens it is going to be ok.
Prayers and positive thoughts for all of us going through this battle.

mrsdit | @mrsdit | May 24 8:46am

Are there any other people here dealing with Merkel cell carcinoma?

Colleen Young, Connect Director | @colleenyoung | May 24 9:44am

In reply to @mrsdit "Are there any other people here dealing with Merkel cell carcinoma?" + (show)

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?

dreams | @dreams | May 25 10:38am

In reply to @sharris "I just found this group and read the comments. Because this is such a rare cancer,..." + (show)

@sharris

I just found this group and read the comments. Because this is such a rare cancer, I thought I'd add my story for what it's worth. I've just had my latest check-up two years out from finding out I had Merkel Cell - a little purple spot on my forehead that my dermatologist did not at first think anything of. I have been going in two or three times a year for dermatologist sessions for about ten years as I've had several instances of melanoma, squamous and basal cell carcinomas - probably from years of sailing. I didn't like the purple bump on my forehead and asked him to remove it more out of vanity than concern, but he was happy to send it in for a biopsy and found out it was serious. He told me he hadn't seen one in twenty years of practice and he sent me immediately to MD Anderson for treatment. Everyone here has experienced or knows about what's next with Merkel Cell - lots of doctors and excision surgery followed by decisions about follow-on therapies. I was terrified after I read up on what Merkel Cell was all about. The MD Anderson folks were really great about calming me down and dealing with what I needed. I was VERY lucky as the excision surgery and sentinel lymph node removal showed that I had gotten treatment early enough to be "stage 0" (in situ) and the very large incision site healed very well and ended up looking like an extra frown line on my face. Even with that, I am still going back to MD Anderson regularly for a CT scan and a chest x-ray and blood work to monitor things. This will continue this for three more years minimum they say. My dermatologist still talks about my case with me when I go back for my regular 4 month check up because it is so rare. Bottom line, I think, is to get regular exams but also be your own advocate. If you see something on your skin that you are worried about, get it removed and get a biopsy. There are worse things than finding out it's nothing after the lab takes a look. I also have become really really vigilant about limiting outdoor exposure (no more sailing) sun screen, sun glasses (it can appear in eyes too), hats and fishing shirts with long sleeves when I go outdoors. I look like a dork in the pool when I'm with my grandkids (and even then I sit under an umbrella mostly), but I'm alive and that's a fair trade in my book. I have real empathy for people going through this and appreciate finding this group. I wish everyone the best.

Jump to this post

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.)

jakefix82 | @jakefix82 | May 25 5:44pm

In reply to @luckyman51 "Hi. I’m a 72 year old male. I was diagnosed with Merkel cell on my right..." + (show)

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.

penlandtr1 | @penlandtr1 | Jun 1 1:21pm

In reply to @ablanton123 "I am a caretaker for my partner that has been diagnosed with MCC last month. Currently..." + (show)

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.

Teresa, Volunteer Mentor | @hopeful33250 | Jun 1 3:30pm

In reply to @penlandtr1 "I was diagnosed with MCC 2+ years ago in my R forearm. Tumor removed, all was..." + (show)

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?