1. < Neuroendocrine Tumors (NETs)

What’s next: Seeking advice on how to navigate diagnosis appointments?

Posted by phoebeghostwriter @phoebeghostwriter, Jan 25, 2022

Hi there! I’ve been posting recently and Thank god I asked about the test and raised my concerns. Before Mayo, I’m flying to MD Anderson tomorrow. Ironically the only thing that anyone took seriously was the mircoandenoma but now it does seem like something is a fowl in my small bowel. Anything I can do to lower serotonin now to keep myself safe? Ok to take pancreatitis enzymes? Or supplements not to take? It’s crazy that this all started with one cortisol test that I ordered for myself in November when I had sudden weight loss…

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

EM | @elm60 | Feb 16, 2022
In reply to @hopeful33250 "I appreciate those encouraging words, @elm60. Was he your doctor?" + (show)
@hopeful33250

I appreciate those encouraging words, @elm60. Was he your doctor?

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No, I am actually a patient at Mayo Clinic Jacksonville. However, I have followed him for years on various publications, videos and on line seminars. I hope you will be able to join in on Thursday!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 16, 2022
In reply to @phoebeghostwriter "Hi there! So I had MD Anderson’s blood tests come in- so along with serotonin of..." + (show)
@phoebeghostwriter

Hi there! So I had MD Anderson’s blood tests come in- so along with serotonin of 381- I have insulin growth of 285. My creatine was also low. My chromin G was normal as was the 24 hour HPPA test. I’m still seeking a diagnosis. I have my follow up with my doctor from MD Anderson Monday via phone and I also was able to schedule a appointment with a carnoid specialist in Miami prior to Mayo. However I’m not sure what generally happens next. Do doctors typically order a Gallium 68 now? Biopsy? Should I push hard for a scan now? Would anyone provide Somatostatin at this point or address the glucose or creatine? Any shared experiences would be welcomed. I’m not looking for medical advice just an idea on having to navigate appoints and how quickly things may or may not move or questions to ask. Thank you!

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Hey Phoebe, how are you doing? When do you head to Mayo Clinic?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 19, 2022
In reply to @rickclem "Hello. My wife is a PNET patient at Mayo Rochester - I am her caregiver /..." + (show)
@rickclem

Hello. My wife is a PNET patient at Mayo Rochester - I am her caregiver / advocate. I will follow up and share.

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Rick, are you and your wife at Mayo Clinic now? What stage of the "journey" are you at? In treatment or pre or post treatment?

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Rc | @rickclem | Feb 19, 2022

Yes. Current patient in Rochester. Active treatment.

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netpatient | @netpatient | Feb 21, 2022
In reply to @hopeful33250 "@remi @jhilbish @cvb @lenorahaston @captain1950 @khauert @tomewilson @alphanumeric @gulzar @megansims @netpatient @kate12345 @amd12 @tatteesmom3 @elm60 I'm..." + (show)
@hopeful33250

@remi @jhilbish @cvb @lenorahaston @captain1950 @khauert @tomewilson @alphanumeric @gulzar @megansims @netpatient @kate12345 @amd12 @tatteesmom3 @elm60

I'm really excited for you and others in our NET group to attend the Carcinoid Cancer Foundation's Meet the Expert on Thursday, Feb. 17, from noon to 1 p.m. EST. The reason for my excitement is that Mayo Clinic's Dr. Halfdanarson will be speaking. Many of you who have been treated at Mayo for NETs have undoubtedly met with Dr. Halfdanarson. He is an excellent speaker and well trained in NETs. This will be both a Facebook Live presentation as well as available on Youtube for those not connected with Facebook. Here is the link for more information,
https://www.facebook.com/Carcinoid/photos/a.434139689226/10159025786344227/

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I missed the meeting. I'm sorry. Is there any recovery of lost time? I hope
so, hopeful33250.

Shakirat

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 21, 2022
In reply to @netpatient "I missed the meeting. I'm sorry. Is there any recovery of lost time? I hope so,..." + (show)
@netpatient

I missed the meeting. I'm sorry. Is there any recovery of lost time? I hope
so, hopeful33250.

Shakirat

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@netpatient Hello Shakirat and to all members. I missed this live presentation as well, so I'm looking forward to viewing it.

Yes the meeting was recorded on the CCF Facebook Page. Here is the link,
https://www.facebook.com/Carcinoid/videos

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anxious88 | @anxious88 | May 15 1:00am
In reply to @phoebeghostwriter "@colleenyoung any experiences you could share with my new questions? I don’t feel very brave today...." + (show)
@phoebeghostwriter

@colleenyoung any experiences you could share with my new questions? I don’t feel very brave today. My legs are so thin and it’s hard to walk. I’m trying to hold on until next Wednesday. With gratitude, Angela

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Hey! I am dealing with same issues, how are you now?

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | May 20 5:17pm
In reply to @anxious88 "Hey! I am dealing with same issues, how are you now?" + (show)
@anxious88

Hey! I am dealing with same issues, how are you now?

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How are you doing, @anxious88? Do you have a confirmed diagnosis now? A treatment plan?

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