Pancreatic Neuroendocrine Tumor (PNET) Support Community

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sandostatin

By betetere · New reply May 20, 2013
Discussion in Advocacy and awareness · 2 replies
Hi... I have been diagnosed since 2009-pancreatic nerurendrocine-metasticezed to bones(very painful) and liver- through many trials at moffit - then tried affinitor- if you know my story, didn't do good ...

whipple surgery

By joejoe754 · New reply May 20, 2013
Discussion in Watchful waiting · 4 replies
Can anyone tell me the life expectancy of post whipple surgery? What I read on the internet is scary, but curious what others here might know. I realize you are not suppose to believe everything you read ...

Five million

By Brian · New reply May 18, 2013
Journal · 205 replies
Dear members, Yesterday, Inspire reached a milestone: five million posts written by members! Each of these posts, and the 700 million words they contain, are a simple measure of how much we all do to ...

Flu-like Symptoms Caused an Emergency CT Scan and CBC Today.

By Jer_ · New reply May 18, 2013
Journal · 18 replies
This morning began in a left inguinal lymph node being a little touchy during a shower. I passed it off for being out in the yard all weekend. However, when I drove to work and got out of the vehicle ...

High Bilirubin

By Annalena · New reply May 16, 2013
Discussion in Living with PNET · 2 replies
Hi, my husband has very high Bilirubin. Has anyone experience with this? (European: 46, 40-50 is jaundice, guess there is different system in North America) He is not yellow of skin or eyes - yet. His ...

psorias

By Richfield · Posted May 15, 2013
Discussion in Watchful waiting · 0 replies
I have recently developed psorias like spots on both of my feet. Wondering if anyone else has anything like this & is it a symptom or connected in anyway to neuroendocrine cancer ...

Husband diagnosed March 2003

By MARYRON91 · New reply May 13, 2013
Discussion in Living with PNET · 12 replies
Hi, My name is Mary. My husband Ron was diagnosed over 10 years ago Pnet w/ liver mets. Had over 30 intrahepatic chemoembolizations. Once mets expanded past liver to bone/lymph nodes, started oral and ...

Still Fighting PC

By BobLaC · New reply May 10, 2013
Journal · 34 replies
My 57-year-old wife had surgery in June 2011 to remove a tumor from her pancreas. The tumor was on the head of the pancreas; surgeon removed 2/3 of the pancreas, her spleen, and five lymph nodes. Although ...

Insurance woes

By mfromaz · New reply May 8, 2013
Discussion in Living with PNET · 7 replies
Has anyone who is on Sandostatin had issues with insurance not covering the shots? I just received an explanation of benefits saying that they were not covering my almost $8000 Sandostatin shot because ...

So Hard to Watch

By BobLaC · New reply May 7, 2013
Journal · 4 replies
My wife has now passed the two year mark since being diagnosed with PC, but it's becoming much more of a struggle for her. With the return of the tumor and this new round of Gemzar/Abraxane for chemo ...

Final results from Y90 are here

By Texas85 · New reply May 6, 2013
Discussion in Chemotherapy and targeted therapies · 15 replies
We meet with the oncologist yesterday for the results of the Y90 procedure that was completed in February. All liver mets have either decreased in size or are gone. Here is the odd part they can't explain ...

Good NET interview with 3 of the top Neuroendocrine specialists in US

By Dkaj · Posted May 6, 2013
Discussion in Advocacy and awareness · 0 replies
Hi All, I hope this posts ok. Good informational interview on NET, symptoms, treatment, and most importantly making sure you have a NET specialist and the importance of being educated on your type of ...

what will the end be like?

By Maria-D · New reply May 5, 2013
Discussion in Living with PNET · 7 replies
Someone told me this will be a slow painfull death... When I ask my doctor she says everyone is different. I just want to know what to expect & how to deal with it. does any one have an idea of what is ...

Free Carcinoid/NET mini-symposium in NJ

By Caring4Noids · Posted May 5, 2013
Discussion in Advocacy and awareness · 0 replies
This may not apply to all on this forum. We are proud to announce that the New Jersey Carcinoid Cancer NETwork, in cooperation with Holy Name Medical Center Oncology Department will be holding a half ...

A new Inspire report in collaboration with Stanford Medical School

By Brian · New reply May 5, 2013
Journal · 84 replies
As many of you know, Inspire has a professional collaboration with the Stanford University School of Medicine. Inspire members have written personal stories for the Stanford Scope column. I am pleased ...

Neuroendocrine Tumors Metastic to the Liver

By byland · New reply May 4, 2013
Discussion in Living with PNET · 6 replies
Hello all, I am new to this group. My father was diagnosed with this type of rare cancer in January 2012 and I have been trying to find out information on it ever since. I am happy I found this community ...

Xeloda and Temodar

By StevenAL · New reply May 3, 2013
Discussion in Chemotherapy and targeted therapies · 3 replies
I just started an oral chemo regimen of Xeloda for two weeks, (3 pills 2x a day) combined with Temodar for the last 5 days of the two weeks. Has anyone else been on this? What were the "side effects ...

Interesting work at Uppsala

By Michael-PA · New reply April 30, 2013
Discussion in News and research · 7 replies
This is a link to the description and video of work being done now in Uppsala www.PossibleCancerCures.com Michael-PA ...

NET Patient Conference Rochester, MI

By Carcinoidaware · Posted April 30, 2013
Discussion in Advocacy and awareness · 0 replies
CCAN's NET Cancer Patient Conference Series Rochester, Michigan 8:00 AM - 8:45 AM Registration & Continental Breakfast 8:45 AM - 9:00 AM Welcome & Expectations Robert Wahmann 9:00 AM - 9:45 AM ‘What is ...

Sunitinib malate for the treatment of pancreatic neuroendocrine tumors.

By Dkaj · New reply April 21, 2013
Discussion in Chemotherapy and targeted therapies · 34 replies
Hi All, I am so excited to see that this group is being stared through Inspire. I am posting a question as my mom has islet cell (pancreatic) neuroendocrine cancer with mets to her liver. She has been ...

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