1. < Neuroendocrine Tumors (NETs)
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Any NET patients from NYC

Posted by Laurell @laurell410, Mar 22, 2022

Looking to connect with patients diagnosed with NET in NYC

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

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Laurell | @laurell410 | May 8, 2022
In reply to @hopeful33250 "Hello @laurell410 Since you mentioned that you are not able to attend the Mayo support group..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @laurell410

Since you mentioned that you are not able to attend the Mayo support group meetings due to a work conflict, I thought I would send you a link to a podcast that sounds good. Here is the link,
https://netrf.org/podcast/episode-18-high-grade-nets/
One of the speakers is Dr. Thor Halfdanarson of Mayo Clinic in Rochester, MN.

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Thank you , I will check it out

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Laurell | @laurell410 | Jun 3, 2022
In reply to @hopeful33250 "Hello @laurell410, I'd like to add my welcome to you as you have joined the NETs..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @laurell410, I'd like to add my welcome to you as you have joined the NETs discussion on Mayo Clinic Connect. Those of us with this rare form of cancer find support and encouragement by sharing together our experiences. I have had three surgeries for NETs in the duodenal bulb. The lesion was found incidentally when an upper endoscopy was done. I had no symptoms.

I see that you had a biopsy on the 25th. Have the results been posted yet?

It would be interesting to know what symptoms led to your diagnosis of a NET in your pancreas. Were you have digestive tract problems or low blood sugar?

I look forward to getting to know you. Will you continue to share?

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I just realized that I didn't respond to you but some days I am fatigue and severe diarrhea . The liver biopsy determined intermediate category at 18. 1 tumour on pancreas and 3 on the liver. Prior to March 2022 I was diagnosed with gastritis now we know that it was NETs. The hematologist order labs every 6mths due to anemia. The labs showed declining platelets. Shd ordered an ultrasound and it showed 3 lesions on my liver. She ordered an MRI which showed the tumors on the pancreas and liver. I currently receive a monthly injection of octreotide and the last scan that I had in April showed that the tumors are stable no growth or shrinkage. June 10th I will have a MRI and depending on what is found will determine if I will start chemo

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Laurell | @laurell410 | Jun 3, 2022
In reply to @hopeful33250 "@laurell410 I hope that your doctors find an answer to your symptoms before beginning chemo. Are..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

@laurell410

I hope that your doctors find an answer to your symptoms before beginning chemo. Are the doctors considering PRRT treatments?

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It was determined that I had a hernia the size of a golf ball. And it was removed. What is PRRT treatment?

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sophiarose | @sophiarose | Jun 19, 2022
In reply to @hopeful33250 "Hello @laurell410, it is nice to hear from you again. I'm sure you are glad that..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @laurell410, it is nice to hear from you again. I'm sure you are glad that the hernia surgery is behind you now. Now that your biopsy results have determined a NET diagnosis, I would like to invite you to a NETs support group meeting hosted by Mayo Clinic. It is a virtual meeting, via Zoom, and it is a place where you can meet others with NETs and share experiences, treatments, etc. Here is the invitation for the monthly meeting that will take place tomorrow, May 5:

The Neuroendocrine Cancer Zebras meet monthly on the first Thursday every month from 5:30 to 7:00 p.m. Eastern time by the Florida campus of Mayo Clinic. You can join the meeting virtually using Zoom. Each meeting features an invited guest speaker. Topics include symptom and disease management as well as the emotional, physical, and financial impact of disease.

Please click the link to register in advance for this meeting:
https://mchealth.zoom.us/meeting/register/vpUqdeGvrzksvBPx9kW8518Rtp8_vzMoEg
After registering, you will receive a confirmation email containing information about joining the meeting.
Zoom online meeting

@laurell410, You mention a lot of symptoms such as loose stools, etc. that are often related to carcinoid syndrome. Has your NET specialist mentioned the possibility of carcinoid syndrome? I mention this because there are monthly injections that many NET patients receive to alleviate these symptoms.

You might ask your oncologist about these injections to see if they might help you.

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I get a shot every 28 days of lanreotide is this the same

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sophiarose | @sophiarose | Jun 19, 2022
In reply to @laurell410 "3 weeks ago I had a MRI and it found a tumour on the tail of..." + (show)
Profile picture for Laurell @laurell410

3 weeks ago I had a MRI and it found a tumour on the tail of the pancreas and 3 tumors on the liver. I saw one doctor at Mt Sinai but decided that I would rather seek care at Memorial Sloan Kettering Cancer Center. I am scheduled for a biopsy this Friday 25th. I see a hematologist every 6months because of anemia and she noticed that my platelets have been declining,,she thought that there was an issue with my spleen; but it turned out to be NET

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I am currently seeing at Mount Sinai I am calling a Dr tomorrow at Slone for a second option
I need answers

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Laurell | @laurell410 | Jun 19, 2022
In reply to @sophiarose "I am currently seeing at Mount Sinai I am calling a Dr tomorrow at Slone for..." + (show)
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I am currently seeing at Mount Sinai I am calling a Dr tomorrow at Slone for a second option
I need answers

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In the meantime go to mt sinai and ask for all your scans/mri to be put on a disc. mskcc will want it. Ask for Dr. REIDY at MSKCC she is awesome and only treats Neuroendocrine Tumors.

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Laurell | @laurell410 | Jun 19, 2022
In reply to @sophiarose "I am currently seeing at Mount Sinai I am calling a Dr tomorrow at Slone for..." + (show)
Profile picture for sophiarose @sophiarose

I am currently seeing at Mount Sinai I am calling a Dr tomorrow at Slone for a second option
I need answers

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18449230361
MSKCC

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 19, 2022
In reply to @sophiarose "I am currently seeing at Mount Sinai I am calling a Dr tomorrow at Slone for..." + (show)
Profile picture for sophiarose @sophiarose

I am currently seeing at Mount Sinai I am calling a Dr tomorrow at Slone for a second option
I need answers

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Hello @sophiarose ,

It is a!ways a good idea to seek a second opinion. How are you feeling? Are you able to eat, do you have much fatigue or pain?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 19, 2022
In reply to @laurell410 "In the meantime go to mt sinai and ask for all your scans/mri to be put..." + (show)
Profile picture for Laurell @laurell410

In the meantime go to mt sinai and ask for all your scans/mri to be put on a disc. mskcc will want it. Ask for Dr. REIDY at MSKCC she is awesome and only treats Neuroendocrine Tumors.

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@laurell410, you'll notice that I removed your personal contact information from your post above. We recommend sharing personal contact information using the secure private message function rather than in the public forum.

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