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

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!!

@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?

A dear friend of mine was diagnosed with Merkel. He had it on his leg, a little ways above the knee. It was stage 2a he said. As fate would have it, he had relocated from Florida to Napa valley in California, close to Stanford. Come to find out they were a leading facility with doctors who specialized in Merkel and its research. He had several rounds of radiation and is now on watch getting a PET scan every 3 months and is fine. He mentioned he might move back to the East Coast and his doctor said find a Moffitt as they also specialize in treating Merkel. I hope this helps.

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?

Hey Lynn, good to hear from you. O, I forgot to mention I put in a heaping teaspoon of sugar in the oatmeal and a little salt. (This is why my wife won't let me in the kitchen!)
The blender sounds like a good idea and hopefully it will be useful in preparing foods for you.
I was fortunate to not need any stronger pain meds than Motrin during the day and Lorzapam (1 mg) at night for sleeping. The radiologist recommended I use what was necessary for pain and in addition I was prescribed Gabapentin (300 mg). I am weaning myself from the Gabapentin because I no longer have any problem with pain.
My taste is slowly returning but has a long way to go. My sinuses are finally improving because I had some bleeding for over a month after treatments ended. Toothpaste no longer burns my mouth and gums while brushing my teeth. Thank Goodness most things are returning back to normal!
We were able to play golf yesterday and I'm back to working out so keep on with your walks in the woods and regarding your treatments, "This too shall pass!"