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

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.

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?

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

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.

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!

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.

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.

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!

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!!