What topics do you want for the Neuroendocrine Support Group?

Posted by amandafl @amandafl, Sun, Sep 8 2:50pm

There’s a new Neuroendocrine Support Group that’s open to patients and caregivers over the phone (for those who aren’t local) and in person in Jacksonville, FL. Are there any topics that you want to discuss?

Liked by andre1221

@collielady

I joined the NET support group because my father had an intestinal carcinoid tumor; my half sister had NETS removed from her lung and another paternal relative had a Merkel Cell Carcinoma. I worry that NETs could show up in myself or other family members. And wonder if there are tests that could be done to discover something sooner rather than later.

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Hello @collielady

I would encourage you to check with the NIH in Bethesda, Maryland. They have been doing research studies on families with NETs. Here is their website for clinical trials,
https://www.nih.gov/health-information/nih-clinical-research-trials-you
Also, have you had any genetic testing for yourself? If not, you may want to discuss this with your endocrinologist. I personally believe that all of us with NETs need to have an endocrinologist on our medical team. They have invaluable insight and knowledge into the workings of the body. I think of them as the IT professionals of the body system.

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To @tomewilson and All,

I see that many of you have mentioned weight loss, difficulty eating, etc. as a result of surgeries for NETs in the digestive tract.

On Connect we do have several discussions about this topic. Many of these discussions are related to surgeries for diverticulitis and/or other digestive tract problems but I've found them very helpful for me. (I have also had two invasive surgeries for NETs in the duodenal bulb and then a third surgery that was done endoscopically.)

Here are links to some of these discussions:
https://connect.mayoclinic.org/discussion/slow-transit-constipation-and-surgery/
https://connect.mayoclinic.org/discussion/chronic-small-bowel-obstruction-from-adhesions/
Feel free to not only read the posts but also to ask questions of the Members. You might find @thull to have some good ideas as she has had many surgeries and has dealt with these problems for many years.

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@hopeful33250

To @tomewilson and All,

I see that many of you have mentioned weight loss, difficulty eating, etc. as a result of surgeries for NETs in the digestive tract.

On Connect we do have several discussions about this topic. Many of these discussions are related to surgeries for diverticulitis and/or other digestive tract problems but I've found them very helpful for me. (I have also had two invasive surgeries for NETs in the duodenal bulb and then a third surgery that was done endoscopically.)

Here are links to some of these discussions:
https://connect.mayoclinic.org/discussion/slow-transit-constipation-and-surgery/
https://connect.mayoclinic.org/discussion/chronic-small-bowel-obstruction-from-adhesions/
Feel free to not only read the posts but also to ask questions of the Members. You might find @thull to have some good ideas as she has had many surgeries and has dealt with these problems for many years.

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Thank you.

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@amandafl

This is actually the discussion topic for our next meeting on Thursday, October 3rd at 5:30pm EST. The meeting is in Jacksonville, FL but there is a call in number for those who are not local and they welcome questions. I am attaching the information if you are interested.

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More topics from dietitians/nutritionist are welcomed! 🙂

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@hopeful33250

Hello @collielady

I would encourage you to check with the NIH in Bethesda, Maryland. They have been doing research studies on families with NETs. Here is their website for clinical trials,
https://www.nih.gov/health-information/nih-clinical-research-trials-you
Also, have you had any genetic testing for yourself? If not, you may want to discuss this with your endocrinologist. I personally believe that all of us with NETs need to have an endocrinologist on our medical team. They have invaluable insight and knowledge into the workings of the body. I think of them as the IT professionals of the body system.

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Thanks for your reply, Teresa @hopeful33250. I contacted NIH a couple years ago about their research in familial carcinoid cancer. They were very interested in having my family join the research. But they needed proof of two relatives with NETs. And my half-sister refused to sign the release of information so her biopsy reports could go to NIH. And at that time they were not including Merkel Cell Carcinoma in their criteria. Needless to say sister and I were very disappointed. So now my focus is in finding out how family members could be checked for NETs so a diagnosis could be made early.
BTW – do you live in Jacksonville Beach?

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@collielady

Thanks for your reply, Teresa @hopeful33250. I contacted NIH a couple years ago about their research in familial carcinoid cancer. They were very interested in having my family join the research. But they needed proof of two relatives with NETs. And my half-sister refused to sign the release of information so her biopsy reports could go to NIH. And at that time they were not including Merkel Cell Carcinoma in their criteria. Needless to say sister and I were very disappointed. So now my focus is in finding out how family members could be checked for NETs so a diagnosis could be made early.
BTW – do you live in Jacksonville Beach?

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@collielady Hello Faith,

I'm sorry to hear that your family could not take advantage of the NIH study. That really is too bad. I live in SE Michigan so I'm not at all close to Jacksonville. I envy those of you who are close to the Mayo Clinic in Florida!

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@coolwino

I would like to learn about various ways to deal with pain. There seem to be several medications you can take with varying side effects. Some, like constipation, make the pain even worse. What other options are there? We have tried CBD, Essential Oils and that has not helped. Can we talk about pain pumps and how they work? Appreciate your putting on these support group meetings. I wish I had known about this when we started our journey at Mayo in 2016!! How come no one told us about Mayo Connect and the support group????

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Hi @coolwino, welcome to Connect. I'm sorry that you didn't find us when you started this unwanted journey in 2016, but I'm very glad you found us now. The in-person support group in JAX is new and luckily they are also accessible by teleconference so you don't have to be in Jacksonville to take part. Because you are following the NETs group, you will receive an email notification of upcoming meetings and the topic.

Pain and Cancer is a great topic to discuss here on Connect too. Might I suggest that you start a new discussion devoted to that topic to gather suggestions and coping strategies from other members. Here's how to start a new discussion:
Here's how to create a new discussion post.
1. Go to the NETs group https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/
2. Click START A DISCUSSION
3. Enter a title and message. For example "Pain and Cancer"
4. Click CREATE DISCUSSION.

You can find more tips about how to use Connect in the Get Started Guide founder in the footer at the bottom of any page on Connect. Here's the direct link: https://connect.mayoclinic.org/get-started-on-connect/

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Hello @coolwino,

I would like to join Colleen, @colleenyoung, in inviting you to join Connect's NET discussion group. I'd enjoy getting to know you better. Please share as you are comfortable doing so: How long ago were you diagnosed with NETs? Was the location of your NETs in the digestive tract? What symptoms/diagnostic tests led your doctor to this diagnosis?

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More control of BP during syndrome attacks.

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Also relief from flushing pain during attacks. I flush from my eyes to my knees.

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@nigelvw

Also relief from flushing pain during attacks. I flush from my eyes to my knees.

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Great suggestions, @nigelw. I'm sure @amandafl will appreciate these.

Nigel are you able to attend the support group at the Mayo Jacksonville campus? If I recall correctly you said you were treated there, right?

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