1. < Neuroendocrine Tumors (NETs)

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.

rogermcintire | @rogermcintire | Feb 3 9:20am
In reply to @penlandtr1 "Hi All, It's always great to hear about positive feedback from MCC. It can be very..." + (show)
@penlandtr1

Hi All,
It's always great to hear about positive feedback from MCC. It can be very difficult sometimes to stay positive with this type of cancer. It is a (sneaky bas#^rd) Sorry!!
Sometimes it gets the better of me. I find that I go through good Days and bad. Yesterday was a bad one. Depression is something I've never had to deal with until now. My first round of radiation went well, no major side effects as it was focused on my right forearm. This time it's more focused on my upper body core and the side effects are a lot harder. (Nauseous, fatigue, headaches,.
I'm done ranting now. This is my only outlet with understanding. Hope everyone has a great weekend. 👍

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Rant on my friend and yes there is understanding and support!

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lynn99 | @lynn99 | Feb 4 10:12am

Thanks for your responses. My PET scan was good, thankfully. I have had 3 radiation treatments, was glad to have the weekend off. Mostly just had headaches but Tylenol helped. Some fatigue but pacing myself. Trying to walk 30 min everyday. My dog and I both need it. lol. Roger, has your taste returned? We are trying to eat clean, lots of veges and fruit and protein. No alcohol, sugar, and trying not to eat much processed foods. My daughter sent me lists of cancer fighting foods. Also planning a few fun things to look forward to. Trusting God to get me through it. Traci, is your 2nd round of radiation in a different area? Different side effects? Hang in there, it will go fast.

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2 replies
penlandtr1 | @penlandtr1 | Feb 4 12:29pm
In reply to @lynn99 "Thanks for your responses. My PET scan was good, thankfully. I have had 3 radiation treatments,..." + (show)
@lynn99

Thanks for your responses. My PET scan was good, thankfully. I have had 3 radiation treatments, was glad to have the weekend off. Mostly just had headaches but Tylenol helped. Some fatigue but pacing myself. Trying to walk 30 min everyday. My dog and I both need it. lol. Roger, has your taste returned? We are trying to eat clean, lots of veges and fruit and protein. No alcohol, sugar, and trying not to eat much processed foods. My daughter sent me lists of cancer fighting foods. Also planning a few fun things to look forward to. Trusting God to get me through it. Traci, is your 2nd round of radiation in a different area? Different side effects? Hang in there, it will go fast.

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Hi Lynn, This round is in R -Axilla (lymphnodes) MMCC has metastasized from my right forearm. The radiation is having more side effects than the last time. More of my core is being affected this time. Starting my 3rd week on Monday. Only 4 weeks to go. I too am finding that the headaches and fatigue are the worst this time. One day at a time, good days and bad. Try to stay positive.

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rogermcintire | @rogermcintire | Feb 6 8:33am
In reply to @lynn99 "Thanks for your responses. My PET scan was good, thankfully. I have had 3 radiation treatments,..." + (show)
@lynn99

Thanks for your responses. My PET scan was good, thankfully. I have had 3 radiation treatments, was glad to have the weekend off. Mostly just had headaches but Tylenol helped. Some fatigue but pacing myself. Trying to walk 30 min everyday. My dog and I both need it. lol. Roger, has your taste returned? We are trying to eat clean, lots of veges and fruit and protein. No alcohol, sugar, and trying not to eat much processed foods. My daughter sent me lists of cancer fighting foods. Also planning a few fun things to look forward to. Trusting God to get me through it. Traci, is your 2nd round of radiation in a different area? Different side effects? Hang in there, it will go fast.

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Hello Lynn, my taste is slowly returning. I can taste chocolate but not much else. It has been 24 days since the last radiation treatment and most of the side effects are waning. I will be hoping your side effects are minimal. It is not easy to go through, but your positive attitude will certainly help.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 9 5:11pm
In reply to @leweslad "Has any member of the group been treated with immunotherapy for squamous cell carcinoma ? Been..." + (show)
@leweslad

Has any member of the group been treated with immunotherapy for squamous cell carcinoma ?
Been recently diagnosed and will have a PET scan in a few weeks to check for possible spread. Thanks, in advance, for any replies.

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@leweslad, do you have squamous cell carcinoma of the skin or elsewhere?

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lynn99 | @lynn99 | Feb 10 8:11am
In reply to @rogermcintire "Hello Lynn, my taste is slowly returning. I can taste chocolate but not much else. It..." + (show)
@rogermcintire

Hello Lynn, my taste is slowly returning. I can taste chocolate but not much else. It has been 24 days since the last radiation treatment and most of the side effects are waning. I will be hoping your side effects are minimal. It is not easy to go through, but your positive attitude will certainly help.

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Roger, glad your side effects are diminishing ! Chocolate is a great place to start tasting! lol.
Penlandrl, hope your SE are manageable. Rest when you can.
I have 8 days done. Enjoying the 2 days of the weekend off. 22 days left. A week was added in my chart. Came to my cabin and going to watch the river flow by today. And go for a walk in the woods. Always good for my spirit.
No headaches this week which has been a blessing and mostly just fatigue. My Dr thinks it more related to my surg which was pretty extensive and not the treatment yet. Treatments are getting easier, less anxiety, just imaging the Lord next to me with his hand on my shoulder…..it helps me. Praying for a good week for you all. ❤️

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1 reply
rogermcintire | @rogermcintire | Feb 10 9:57am
In reply to @lynn99 "Roger, glad your side effects are diminishing ! Chocolate is a great place to start tasting!..." + (show)
@lynn99

Roger, glad your side effects are diminishing ! Chocolate is a great place to start tasting! lol.
Penlandrl, hope your SE are manageable. Rest when you can.
I have 8 days done. Enjoying the 2 days of the weekend off. 22 days left. A week was added in my chart. Came to my cabin and going to watch the river flow by today. And go for a walk in the woods. Always good for my spirit.
No headaches this week which has been a blessing and mostly just fatigue. My Dr thinks it more related to my surg which was pretty extensive and not the treatment yet. Treatments are getting easier, less anxiety, just imaging the Lord next to me with his hand on my shoulder…..it helps me. Praying for a good week for you all. ❤️

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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!

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lynn99 | @lynn99 | Feb 18 9:28am

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

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2 replies
penlandtr1 | @penlandtr1 | Feb 18 11:12am
In reply to @lynn99 "I’m almost halfway, I’ve had 13 treatments. The side effects hit me hard last week. Going..." + (show)
@lynn99

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

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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.

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2 replies
rogermcintire | @rogermcintire | Feb 18 2:14pm
In reply to @lynn99 "I’m almost halfway, I’ve had 13 treatments. The side effects hit me hard last week. Going..." + (show)
@lynn99

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

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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!

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