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

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!"

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.

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.

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.

Hello Lynn, sorry the side effects have caught up with you. Has the Magic Mouthwash been prescribed for you yet? Rather than rinsing my entire mouth I found that using a cue tip and applying the medicine directly to the painful area worked best for me.
The only protein drink I could tolerate was Fairlife Chocolate and have to admit I wasn't too fond of this either.
Oatmeal (one half cup with cup of water) with honey (spoonful), raisins, Cinnamon and then milk to improve consistency became my go-to food when side effects were at their worst.
My OPDIVO immunotherapy infusions every two weeks haven't produced any side effects as of yet, fingers crossed.
Hang in there and keep your positive attitude, spring is coming and the walks in the woods are something to look forward to!

Hi.
Wish I had a better idea about food. The only thing that doesn't make me sick are icecream sandwiches 😤. I finished my 20th radiation treatment last Friday. Only 10 more to go. I got a referral to Fred Hutchinson cancer center in Seattle. Hope they have some better ideas, as I was told last week that the MMCC has spread to my ribs. Stage III. I try to stay positive with all of this. Good days and bad.

I’m almost halfway, I’ve had 13 treatments. The side effects hit me hard last week. Going on liquids today as I think it might be easier and less painful. Also looking for ideas to get rid of the metallic taste in my mouth. I can’t chew gum. lol. What are your fav protein drinks. I want something not full of sugar. Also not crazy about sucrose. Thanks

Hey Lynn, sounds like you are handling the treatments very well and you are correct when you say the anxiety lessens as the process goes on. Your faith is an obvious strength that will get you through this and your sharing benefits those of us going through it with you!
Central Illinois had a break in the winter weather yesterday and we played 18 holes of golf. It was great therapy as it took my mind off of this Merkel stuff and reminded me of how much my golf game is in need of improvement!
I'm hoping your weekend away from treatment will strengthen you for the remaining sessions. Hang in there!