1. < Neuroendocrine Tumors (NETs)

Merkel cancer update

Posted by rogermcintire @rogermcintire, Mar 14 8:59am

I have stage 3 Merkel cell carcinoma under my left eye and facial surgery showed cells in a lymph node in the cheek. I have had 25 radiation treatments and just completed my eleventh immunotherapy using OPDIVO. This week I had CT scans and am happy to report the scans were normal!!

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lynn99 | @lynn99 | 6 days ago
In reply to @rogermcintire "Hello Lynn. Sounds like you are hanging in there and still keeping a positive attitude. Radiation..." + (show)
@rogermcintire

Hello Lynn. Sounds like you are hanging in there and still keeping a positive attitude. Radiation treatment has a long-lasting effect on the body. I am going to have to have speech therapy because of a thickening in the throat area. It sounds like there are exercises I can do that will make swallowing easier and to keep the situation from getting worse. I still do not have whiskers on the left side of my face yet so I guess one positive result is my shaving time is reduced to half time.
I too try and keep a positive attitude and am so grateful for the recent PET scan showing no signs of Merkel but must admit to a looming dread of its return.
In the meantime I am thankful for every day as a gift.
Take care of yourself and keep in touch.

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Roger, hopefully the exercises they show you will help improve your swallowing. Good news about your PET scan. I’ve lost most of my facial hair too. lol. Also half of my eyebrows. I’m still dealing with gunky sinuses and some lymphedema in my neck. Have an apt with OT coming up. I found some exercises on line I’m doing. My face and eye is still swollen. But it is all slowing going towards getting better so I’m happy about that. Some days I have a little bit of energy. Keep your positive attitude. We need to fight this nasty disease. Praying for you.

REPLY
rogermcintire | @rogermcintire | Apr 20 9:27am
In reply to @cindylyte "Thank you so very much rogermcintire, I have been diagnosed with Merkel Cell Carcinoma January 2024,..." + (show)
@cindylyte

Thank you so very much rogermcintire,
I have been diagnosed with Merkel Cell Carcinoma January 2024, So many PT, PET, MRI, Biopsy, Blood Drawn, Referrals, Dr. Here, Dr. There, God give me the strength.
Yesterday, a Dr. told me he had a patient who was cured of the Merkel Cell Cancer, I thanked him so very much because what he said, gave me the first affirmation since 2023.
And you have validated this for me, I was at the point where, either I will be alive or with God, either is good with me. God be with us all.
The Dr. Did a Very Good Job though!

Jump to this post

Hello Cindy, just checking in to see how you are doing. I wanted to share some positive news about my recent PET scan. The results indicated no Merkel cancer present after the surgery and 25 radiation treatments along with continuing immunotherapy infusions every two weeks.
I continue to be grateful for every day as a gift!
Take care of yourself.

REPLY
rogermcintire | @rogermcintire | Apr 20 9:21am
In reply to @lynn99 "Great news Roger. I finally finished my 30 treatments of radiation, the hardest thing I’ve ever..." + (show)
@lynn99

Great news Roger. I finally finished my 30 treatments of radiation, the hardest thing I’ve ever done. Finished on Tuesday and starting to feel a little more energy. Hoping the other side effects will start to heal soon. My doc said 7 to 10 days. I didn’t completely lose my taste so he said that will come back faster. My nose is a mess and my mouth and throat. Eating is a challenge. Mostly liquids. Anyway great news for you. Golfing weather must be here for you.

Jump to this post

Hello Lynn. Sounds like you are hanging in there and still keeping a positive attitude. Radiation treatment has a long-lasting effect on the body. I am going to have to have speech therapy because of a thickening in the throat area. It sounds like there are exercises I can do that will make swallowing easier and to keep the situation from getting worse. I still do not have whiskers on the left side of my face yet so I guess one positive result is my shaving time is reduced to half time.
I too try and keep a positive attitude and am so grateful for the recent PET scan showing no signs of Merkel but must admit to a looming dread of its return.
In the meantime I am thankful for every day as a gift.
Take care of yourself and keep in touch.

REPLY
1 reply
lynn99 | @lynn99 | Apr 11 7:44am
In reply to @rogermcintire "Hello Lynn, I'm hoping this finds you well and having received good news regarding your PET..." + (show)
@rogermcintire

Hello Lynn, I'm hoping this finds you well and having received good news regarding your PET scan on April 2nd. I'm also hoping your healing process from the 30 radiation treatments continues to improve.
Since our last communication I have had a CT scan and a PET scan. The CT scan must have caused some concern because it indicated a thickening of tissue in my throat resulting in the PET scan. I am thankful to report there was no sign of Merkel cells in the PET scan. I don't meet with my oncologist until next week to determine if my self diagnosis of fibrosis is correct.
I still haven't regained all my sense of taste but enough to maintain my weight.
The improving weather has me back on the golf course and hopefully you are enjoying the walks in the woods.
Take care and I pray all those dealing with Merkel cell cancer are hanging in there!

Jump to this post

Great news Roger. Glad your PET scan was clean. I’m slowing healing from the radiation treatments. Fatigue is still hanging around and my sinuses are slowing improving. Taste is weird. Some things are just fine and others taste terrible. It’s ok I can find things that taste ok. Chocolate doesn’t taste good. My Dr. said sometimes that is the last thing to return….can take up to 18 months. That’s ok too. Meeting with an oncologist who specializes in Merkel cell and immunotherapy tomorrow. He will eventually follow me. Have an apt with my surgeon next week. Not sure of the plan. My lacrimal tear ducts are not open so my eyes are constantly tearing. They are talking about reconstruction but I’m not ready for anything yet. lol. Thankful to be at this stage with radiation behind me. I have a scan the first of June.
Glad you are golfing. I’m getting my walks in most days. Got to see the eclipse this week. It was exhausting to travel but I’m so glad I went. It was amazing. Take care. God bless.

REPLY
rogermcintire | @rogermcintire | Apr 9 7:44am
In reply to @cindylyte "Thank you so very much rogermcintire, I have been diagnosed with Merkel Cell Carcinoma January 2024,..." + (show)
@cindylyte

Thank you so very much rogermcintire,
I have been diagnosed with Merkel Cell Carcinoma January 2024, So many PT, PET, MRI, Biopsy, Blood Drawn, Referrals, Dr. Here, Dr. There, God give me the strength.
Yesterday, a Dr. told me he had a patient who was cured of the Merkel Cell Cancer, I thanked him so very much because what he said, gave me the first affirmation since 2023.
And you have validated this for me, I was at the point where, either I will be alive or with God, either is good with me. God be with us all.
The Dr. Did a Very Good Job though!

Jump to this post

Hey Cindy, just checking in to see how you are doing - well I hope!

REPLY
rogermcintire | @rogermcintire | Apr 9 7:43am
In reply to @lynn99 "Great news Roger. I finally finished my 30 treatments of radiation, the hardest thing I’ve ever..." + (show)
@lynn99

Great news Roger. I finally finished my 30 treatments of radiation, the hardest thing I’ve ever done. Finished on Tuesday and starting to feel a little more energy. Hoping the other side effects will start to heal soon. My doc said 7 to 10 days. I didn’t completely lose my taste so he said that will come back faster. My nose is a mess and my mouth and throat. Eating is a challenge. Mostly liquids. Anyway great news for you. Golfing weather must be here for you.

Jump to this post

Hello Lynn, I'm hoping this finds you well and having received good news regarding your PET scan on April 2nd. I'm also hoping your healing process from the 30 radiation treatments continues to improve.
Since our last communication I have had a CT scan and a PET scan. The CT scan must have caused some concern because it indicated a thickening of tissue in my throat resulting in the PET scan. I am thankful to report there was no sign of Merkel cells in the PET scan. I don't meet with my oncologist until next week to determine if my self diagnosis of fibrosis is correct.
I still haven't regained all my sense of taste but enough to maintain my weight.
The improving weather has me back on the golf course and hopefully you are enjoying the walks in the woods.
Take care and I pray all those dealing with Merkel cell cancer are hanging in there!

REPLY
1 reply
rogermcintire | @rogermcintire | Mar 23 12:32pm
In reply to @cindylyte "Thank you so very much rogermcintire, I have been diagnosed with Merkel Cell Carcinoma January 2024,..." + (show)
@cindylyte

Thank you so very much rogermcintire,
I have been diagnosed with Merkel Cell Carcinoma January 2024, So many PT, PET, MRI, Biopsy, Blood Drawn, Referrals, Dr. Here, Dr. There, God give me the strength.
Yesterday, a Dr. told me he had a patient who was cured of the Merkel Cell Cancer, I thanked him so very much because what he said, gave me the first affirmation since 2023.
And you have validated this for me, I was at the point where, either I will be alive or with God, either is good with me. God be with us all.
The Dr. Did a Very Good Job though!

Jump to this post

Hello Cindy, thank you very much for your response and update on the Merkel Carcinoma you are dealing with. For sure it is a difficult and scary time for most of us and if you are like me, I tend to always think the worst.
But there is hope! I have met and talked with two local men who have had Merkel for several years and are still alive and kicking! I found this very encouraging and hope you will too.
I agree that your surgeon did a great job and you appear to be healing nicely. What is the next course of action in your treatment plan?
Amen on God being with us all !

REPLY
cindylyte | @cindylyte | Mar 23 7:57am
In reply to @mkhighpoint "Wow that is good news for you. I have a similar yet different situation. Merkel showed..." + (show)
@mkhighpoint

Wow that is good news for you.
I have a similar yet different situation. Merkel showed up on my forehead, had surgery and at the same time removed 42 lymph nodes in my neck and under chin. Then 30 rounds of radiation. Merkel spread into my bones and was able to do pin point radiation on my sternum, Feemer and Adrenal gland. Waiting for my next PET/CT on April 2. No immunotherapy yet.
I had a liver transplant 2019 so immunotherapy will be a tricky thing to implement considering anti rejection meds.
Good luck to you and stay positive.

Jump to this post

I hope the best for you.

REPLY
cindylyte | @cindylyte | Mar 23 7:56am

Thank you so very much rogermcintire,
I have been diagnosed with Merkel Cell Carcinoma January 2024, So many PT, PET, MRI, Biopsy, Blood Drawn, Referrals, Dr. Here, Dr. There, God give me the strength.
Yesterday, a Dr. told me he had a patient who was cured of the Merkel Cell Cancer, I thanked him so very much because what he said, gave me the first affirmation since 2023.
And you have validated this for me, I was at the point where, either I will be alive or with God, either is good with me. God be with us all.
The Dr. Did a Very Good Job though!
REPLY
3 replies
rogermcintire | @rogermcintire | Mar 16 4:46pm
In reply to @mkhighpoint "Wow that is good news for you. I have a similar yet different situation. Merkel showed..." + (show)
@mkhighpoint

Wow that is good news for you.
I have a similar yet different situation. Merkel showed up on my forehead, had surgery and at the same time removed 42 lymph nodes in my neck and under chin. Then 30 rounds of radiation. Merkel spread into my bones and was able to do pin point radiation on my sternum, Feemer and Adrenal gland. Waiting for my next PET/CT on April 2. No immunotherapy yet.
I had a liver transplant 2019 so immunotherapy will be a tricky thing to implement considering anti rejection meds.
Good luck to you and stay positive.

Jump to this post

Hello MKhighpoint, thank you for your response and sharing your Merkel situation. It sounds like you have been through a lot and it appears you have maintained a positive attitude. I sincerely hope your April 2nd tests are favorable!

REPLY
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