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.

@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.

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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.)

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@mrsdit

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

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

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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.

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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!

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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.

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@colleenyoung

@ablanton123, welcome. I'm tagging several members who have had immunotherapy as a treatment for merkel cell carcinoma, like @mkhighpoint @lenny48ca @kate777 @lynn99 @rogermcintire who can share their experiences.

Does your partner have a treatment plan now? What are the next steps?

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I have responded well to the Keytruda treatments. I go every three weeks for the infusion treatment and have not had any noticeable unpleasant side effects. Keytruda has been a game changer for many patients with cancer. When I was diagnosed about a year ago with Merkel Cell Carcinoma i was already stage 4 with an avocado-sized tumor in my armpit, a second smaller tumor on my chest and several small ones in my pancreas. I thought I was not going to make it much longer but thanks to the Keytruda immunotherapy the tumors have all shrunk dramatically and I am feeling optimistic that I will survive for many more years. We’ll see but so far so good. I hope your experience is as good as mine has been. Get better and be well.

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I would like to add that I know immunotherapy affects individuals differently, but for me, I have had very few side effects. Sometimes a bit of nausea and definitely tired after the infusions, but I just have a nap and feel great afterward. I'm so grateful for this option. Discuss it with your oncologist and please keep us posted!

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@ablanton123

I am a caretaker for my partner that has been diagnosed with MCC last month. Currently working on a treatment plan that should start in 2 weeks. She had basal and squamous in situ numerous times in the last 10 years. Never any skin issues that were deemed MCC in pathology. Suddenly had a golf ball size lump in axillary left lymph node. Biopsy revealed MCC. PET showed metastatic to left humerus bone only. Stage 4 diagnosis, and seems that the universal treatment for this is immunotherapy...not sure yet what medication will be recommended. Leaning toward Keytruda (pembrolizumab)....or Bavencio (avelumab). Has anyone taken these meds that would share their experience?

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Hi there! I certainly understand how frightening and daunting this can be for you both. I was diagnosed with MCC in April, 2022. Squamous and MCC on my neck; started as what looked like a mole. Never did go to my lymph nodes, but after surgery and 6 weeks of radiation, I had metas to my liver, right illiac (upper pelvic bone), and vertebrae. I had extensive genetic blood work that suggested immunotherapy would work for me. I highly recommend Keytruda!! My bloodwork has been great, I've progressed to getting infusions every 6 weeks instead of every 3 weeks, my last two PET scans have been negative (NED), and my next one will just be a CT scan since I have had such great results. I wish you and your partner all the best, and hope my experience gives you both encouragement as well!! I'm still here and we are MCC warriors!!

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@ablanton123

I am a caretaker for my partner that has been diagnosed with MCC last month. Currently working on a treatment plan that should start in 2 weeks. She had basal and squamous in situ numerous times in the last 10 years. Never any skin issues that were deemed MCC in pathology. Suddenly had a golf ball size lump in axillary left lymph node. Biopsy revealed MCC. PET showed metastatic to left humerus bone only. Stage 4 diagnosis, and seems that the universal treatment for this is immunotherapy...not sure yet what medication will be recommended. Leaning toward Keytruda (pembrolizumab)....or Bavencio (avelumab). Has anyone taken these meds that would share their experience?

Jump to this post

@ablanton123, welcome. I'm tagging several members who have had immunotherapy as a treatment for merkel cell carcinoma, like @mkhighpoint @lenny48ca @kate777 @lynn99 @rogermcintire who can share their experiences.

Does your partner have a treatment plan now? What are the next steps?

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