1. < Neuroendocrine Tumors (NETs)

Carcinoid cancer in intestine or NETs (Neuroendocrine Tumors)

Posted by carcinoid @carcinoid, Jan 17, 2019

2016 my husband lost his colon and part of his small intestine following an colonoscopy. He now has an ileostomy which makes treating the cancer more difficult as he can not have any abdominal surgery anymore. He was on life support at least 2 months and spent a month in rehab learning how to walk, and regain some muscle. I never thought he would walk again, but he is. It is a slow cancer but it spread to his liver and he now has 7 tumors on his liver. There is no treatment to fight the cancer, only sandostatin to control the symptoms. Anyone know anything on the horizon to rid of us this terrible terror of pending unknown trouble.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 18, 2019
In reply to @tresjur "Hello Gaylejean, Rather than write what my PRRT treatment was like, I am sending you a..." + (show)
@tresjur

Hello Gaylejean,

Rather than write what my PRRT treatment was like, I am sending you a link to an 11 minute video that describes exactly how my treatment day went. If you have further questions after you view the video, please write.

Tresjur

Jump to this post

Thanks for providing that video, @tresjur. It was very informative and helpful to those of us who may be involved in this type of treatment in the future. How many treatments are usually done like this?

REPLY
1 reply
carcinoid | @carcinoid | Jan 19, 2019
In reply to @gaylejean "I am @gaylejean. I have never signed up for any area on Mayo Connect EXCEPT the..." + (show)
@gaylejean

I am @gaylejean. I have never signed up for any area on Mayo Connect EXCEPT the NET one and I keep getting other stuff

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@gaylejean Yes, I also get all cancer types. I don't think they have a way to separate the different cancers. At least it shows on the incoming mail what the subject is so I delete the ones that come in not dealing with NETS. I don't mind because I get informed about the NETS .

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gaylejean | @gaylejean | Jan 19, 2019
In reply to @tresjur "Hello Gaylejean, Rather than write what my PRRT treatment was like, I am sending you a..." + (show)
@tresjur

Hello Gaylejean,

Rather than write what my PRRT treatment was like, I am sending you a link to an 11 minute video that describes exactly how my treatment day went. If you have further questions after you view the video, please write.

Tresjur

Jump to this post

thank you - just watched hours of you tube videos on NET. What was your PERSONAL response - nausea, fatigue, recovery?

REPLY
carcinoid | @carcinoid | Jan 19, 2019

@gaylejean - My husband has not had it yet. Our Allentown LVH Cancer Institute is just preparing rooms to begin giving it. On his visit to his Oncologist last week he told him they expect to have it up and ready for April 2019. I like to be prepared ahead of time to what to look for. Not one for surprises anymore; the past 3 years have been full of shocks and surprises and I've had enough now.

REPLY
1 reply
Tresjur | @tresjur | Jan 20, 2019
In reply to @hopeful33250 "Thanks for providing that video, @tresjur. It was very informative and helpful to those of us..." + (show)
@hopeful33250

Thanks for providing that video, @tresjur. It was very informative and helpful to those of us who may be involved in this type of treatment in the future. How many treatments are usually done like this?

Jump to this post

Teresa, I'm pretty sure all of the treatments are handled this way. Since I will have my second treatment on January 30, I will post to let you know if the second infusion was exactly the same as the first.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 20, 2019

@gaylejean According to your profile, you are only following the NETs group and should only be getting notifications about that group. Can you please send me a message using this form. I'll help get things straightened out with you: https://connect.mayoclinic.org/contact-a-community-moderator/

@carcinoid you are following both the Cancer group and the NETs group. If you no longer wish to receive notifications about the Cancer group, simply unfollow it. You can choose to get only a Daily Digest once a day instead of individual emails for every post too.

Learn more about setting your notification preferences in this guide: https://connect.mayoclinic.org/get-started-on-connect/

REPLY
gaylejean | @gaylejean | Jan 21, 2019

Get to the right doctor/facility - there are still options out there for treatment

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gaylejean | @gaylejean | Jan 29, 2019
In reply to @tresjur "Hello Gaylejean, Rather than write what my PRRT treatment was like, I am sending you a..." + (show)
@tresjur

Hello Gaylejean,

Rather than write what my PRRT treatment was like, I am sending you a link to an 11 minute video that describes exactly how my treatment day went. If you have further questions after you view the video, please write.

Tresjur

Jump to this post

I have educated myself on the PRRT process. I am most interested in your PERSONAL experience, i.e.recovery time, nausea, weakness, etc. etc.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 16, 2019
In reply to @carcinoid "@gaylejean - My husband has not had it yet. Our Allentown LVH Cancer Institute is just..." + (show)
@carcinoid

@gaylejean - My husband has not had it yet. Our Allentown LVH Cancer Institute is just preparing rooms to begin giving it. On his visit to his Oncologist last week he told him they expect to have it up and ready for April 2019. I like to be prepared ahead of time to what to look for. Not one for surprises anymore; the past 3 years have been full of shocks and surprises and I've had enough now.

Jump to this post

Hello @carcinoid

How is your husband doing these days? Are the PRRT treatments going to be available at your local hospital in April as anticipated?

REPLY
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