1. < Lung Cancer

Stage four high-grade neuroendocrine carcinoma

Posted by clintwlively @clintwlively, Dec 16, 2023

I am looking for anyone that has dealt with this diagnosis and received treatment. My husband was diagnosed July 2018 and we’ve had two reoccurrence this time it involves the liver and pancreas. I am trying to find the best place to take him to.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 16, 2023

Welcome, @clintwlively. I've added your discussion to the Neuroendocrine Tumors (NETs) Support Group as well - https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

To help me connect you with others, let me see if I got this right. Your husband was originally diagnosed with neuoedocrine carcinoma of the lungs in 2018. This second recurrence now shows lesions involving the liver and pancreas. Do I have that right?

Have you considered a second opinion at Mayo Clinic?

REPLY
1 reply
clintwlively | @clintwlively | Dec 16, 2023
In reply to @colleenyoung "Welcome, @clintwlively. I've added your discussion to the Neuroendocrine Tumors (NETs) Support Group as well -..." + (show)
@colleenyoung

Welcome, @clintwlively. I've added your discussion to the Neuroendocrine Tumors (NETs) Support Group as well - https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

To help me connect you with others, let me see if I got this right. Your husband was originally diagnosed with neuoedocrine carcinoma of the lungs in 2018. This second recurrence now shows lesions involving the liver and pancreas. Do I have that right?

Have you considered a second opinion at Mayo Clinic?

Jump to this post

Actually, it is now the third reoccurrence. Yes I will. I’m trying to get an appointment for a second opinion there.

REPLY
2 replies
clintwlively | @clintwlively | Dec 16, 2023
In reply to @clintwlively "Actually, it is now the third reoccurrence. Yes I will. I’m trying to get an appointment..." + (show)
@clintwlively

Actually, it is now the third reoccurrence. Yes I will. I’m trying to get an appointment for a second opinion there.

Jump to this post

Oops maybe I’ve got that wrong. He started chemo in 2018 then had to go to radiation 2019 whole brain radiation chest and abdomen radiation. Then he started on.opdivo did two years treatment. It was off one year and three months with no treatment. Reoccurrence July 2022, Clinical Trial keyTruda Tak 676, September 2023, reoccurrence of the liver. Just had PET scan Friday and has spread to multiple places.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 16, 2023
In reply to @clintwlively "Actually, it is now the third reoccurrence. Yes I will. I’m trying to get an appointment..." + (show)
@clintwlively

Actually, it is now the third reoccurrence. Yes I will. I’m trying to get an appointment for a second opinion there.

Jump to this post

Here's more information about submitting a request for a second opinion at Mayo Clinic http://mayocl.in/http://mayocl.in/1mtmR63.

Let me also get you connected with other members who have experience with neuroendocrine tumors of the lung that have spread like @californiazebra @pattirushing @aliatl @tufan @bluedane @sylvian @dak10 @mimmy @ce1b

While we wait for others to join in, you might also be interested in this related discussion:
- Newly diagnosed-Primary Malignant Neuroendocrine of Lung
https://connect.mayoclinic.org/discussion/newly-diagnosed-primary-malignant-neuroendocrine-of-lung/
You and your husband have been through a lot. How are you holding up?

REPLY
2 replies
clintwlively | @clintwlively | Dec 16, 2023
In reply to @colleenyoung "Here's more information about submitting a request for a second opinion at Mayo Clinic http://mayocl.in/http://mayocl.in/1mtmR63. Let..." + (show)
@colleenyoung

Here's more information about submitting a request for a second opinion at Mayo Clinic http://mayocl.in/http://mayocl.in/1mtmR63.

Let me also get you connected with other members who have experience with neuroendocrine tumors of the lung that have spread like @californiazebra @pattirushing @aliatl @tufan @bluedane @sylvian @dak10 @mimmy @ce1b

While we wait for others to join in, you might also be interested in this related discussion:
- Newly diagnosed-Primary Malignant Neuroendocrine of Lung
https://connect.mayoclinic.org/discussion/newly-diagnosed-primary-malignant-neuroendocrine-of-lung/
You and your husband have been through a lot. How are you holding up?

Jump to this post

It’s hard! I am a woman of God, and I am trusting my Lord and Savior! He has brought us this far, and I feel that He is leading me to look for actually a specialist for my husband. Thank you for asking.

REPLY
1 reply
clintwlively | @clintwlively | Dec 17, 2023
In reply to @clintwlively "It’s hard! I am a woman of God, and I am trusting my Lord and Savior!..." + (show)
@clintwlively

It’s hard! I am a woman of God, and I am trusting my Lord and Savior! He has brought us this far, and I feel that He is leading me to look for actually a specialist for my husband. Thank you for asking.

Jump to this post

My husbands is ki67 65-70% poor differential he needs to get on some treatment now. We are going to be looking at radiation for palliative pain care, but I need to get in now with a local mayo clinic hospital help there is one in Tennessee Blount county, but we are willing to travel.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 17, 2023
In reply to @clintwlively "My husbands is ki67 65-70% poor differential he needs to get on some treatment now. We..." + (show)
@clintwlively

My husbands is ki67 65-70% poor differential he needs to get on some treatment now. We are going to be looking at radiation for palliative pain care, but I need to get in now with a local mayo clinic hospital help there is one in Tennessee Blount county, but we are willing to travel.

Jump to this post

@clintwlively, there are 3 main Mayo Clinic locations: Phoenix, AZ, Jacksonville, FL and Rochester, MN. If you would like to request a second opinion, you can get started with the information on this webpage: http://mayocl.in/1mtmR63

REPLY
1 reply
clintwlively | @clintwlively | Dec 17, 2023
In reply to @colleenyoung "@clintwlively, there are 3 main Mayo Clinic locations: Phoenix, AZ, Jacksonville, FL and Rochester, MN. If..." + (show)
@colleenyoung

@clintwlively, there are 3 main Mayo Clinic locations: Phoenix, AZ, Jacksonville, FL and Rochester, MN. If you would like to request a second opinion, you can get started with the information on this webpage: http://mayocl.in/1mtmR63

Jump to this post

I have already turned in a request for Appt and I hope I hear back from them tomorrow. Thank you so much for your help.

REPLY
Zebra | @californiazebra | Dec 18, 2023
In reply to @colleenyoung "Here's more information about submitting a request for a second opinion at Mayo Clinic http://mayocl.in/http://mayocl.in/1mtmR63. Let..." + (show)
@colleenyoung

Here's more information about submitting a request for a second opinion at Mayo Clinic http://mayocl.in/http://mayocl.in/1mtmR63.

Let me also get you connected with other members who have experience with neuroendocrine tumors of the lung that have spread like @californiazebra @pattirushing @aliatl @tufan @bluedane @sylvian @dak10 @mimmy @ce1b

While we wait for others to join in, you might also be interested in this related discussion:
- Newly diagnosed-Primary Malignant Neuroendocrine of Lung
https://connect.mayoclinic.org/discussion/newly-diagnosed-primary-malignant-neuroendocrine-of-lung/
You and your husband have been through a lot. How are you holding up?

Jump to this post

@clintwlively
I’m so sorry to hear about your husband’s neuroendocrine carcinoids that are now metastatic. It sounds like he has the atypical aggressive form. I have the slow growing typical carcinoids that luckily haven’t spread so far (it’s my breast cancer that spread) so I’m afraid I don’t have any related advice. I’m praying he finds the right specialist and gets some relief soon.

REPLY
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