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

Hello Penlandtr, Glad to hear you are on the downhill side of your radiation treatments but sorry about the news of the spread to your ribs. Keep on with the positive attitude as much as possible and know thoughts and sincere prayers are headed your way. I too am in Stage Three since the MMCC had progressed to a lymph node at the time of the surgery to the side of my face.
I told Lynn99 that my go-to food when the side effects of radiation were at their worse was oatmeal (1/2 cup with cup of water), teaspoon of honey, raisins and Cinnamon with milk added to improve consistency.
We who are dealing with MMCC and its uncertainty deal with the ups and downs and pray the ups keep the upper hand! Keep in touch.

Thanks for your reply. Sorry to hear it has spread to your ribs. The cancer center in Seattle may have more ideas of treatment etc. In Wi there was only 3 doctors who were recommended for MCC. And only 2 at the Mayo Clinic.
I got a new blender and I’m puring soup and fruit with protein powder and greens. . They are easier on my throat and mouth.
Mine was Stage III right from the start and it was like 24 days from discovering it until the biopsy. And another 20 days until surg. Unfortunately it’s fast. Praying for more good days for you. Hang in there.

Roger, thanks for your reply. I tried your oatmeal yesterday and it was good. Glad you are not having any side effects, hopefully you won’t. I am experimenting with new recipes with my new blender and able to get liquids down so much easier. Adding protein powder and greens to up my nutrition. I do have the magic mouthwash and it is helping. My Dr recommended flat ginger ale for the bad taste in my mouth. Will try that today. Gum helps a bit. I only have a little taste on one side of my mouth. Did you have to go to a narcotic during the day? I started one at night to sleep better. I am still getting my walks in. The woods are actually muddy. So unusual in Wi in Feb! Hang in there.

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!"

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?

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.

@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?

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!!

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!

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.