Inspire connects patients, families, friends and caregivers for support and inspiration... More about this group

Struggling

lkg5966
  • By lkg5966 · New reply 9:03 pm
  • Journal · 5 replies
  • Really struggling with depression and anxiety the last two- three months and just cant seem to kick it. In the last 6 years, I've been nothing but upbeat. Nothing really healthwise has changed, I have ...

A little forum humour

CentaurInaChinashop
  • By CentaurInaChinashop · New reply 6:28 pm
  • Journal · 26 replies
  • I've been noticing some posts over the last little while that seemed to have a degree of negativity. Either in the post itself, or in the replies. I am usually very impressed with the degree of helpfulness ...

NANETS Conf. Notes

dmjoyner89
  • By dmjoyner89 · New reply 4:21 pm
  • Journal · 3 replies
  • Hello all, A participant on another list posted these unedited notes. With permission and a slight edit... NANETS Notes 1. My Net Manager app for managing NET - NOVARTIS 2. Pfizer has a discount card ...

Curious about Ozone Therapy

Bonnie63
  • By Bonnie63 · Posted 3:11 pm
  • Discussion in Living with PNET · 0 replies
  • I've very recently began researching Ozone Therapy. It's called many different things, but I'll stick with Ozone Therapy. Is anyone on this site familiar with it? Has anyone tried it? If so, what are ...

Liver Resection followed by adjunct therapy

Bonnie63
  • By Bonnie63 · New reply 11:16 am
  • Discussion in Living with PNET · 29 replies
  • Hi all. I need some information from any members who have had a liver resection. Was the surgery followed by any kind of adjunct therapy such as Cap/Tem or something else? Were the remaining mets too ...

Capecitabine and Temozolomide

stacheusa
  • By stacheusa · New reply 10:30 am
  • Discussion in Chemotherapy and targeted therapies · 37 replies
  • For those of you that have taken Capecitabine and Temozolomide, did you get this as part of a study? What is your primary site? I see so many have tried this. If not part of a study, did your insurance ...

Insulinoma and Raising Blood Sugar Levels

Courtney155
  • By Courtney155 · New reply 9:10 am
  • Discussion in Living with PNET · 4 replies
  • Does anyone have any handy hints at stabilising blood sugar levels overnight? We were mixing corn flour into greek yoghurt for a while which really helped but we're now finding it isn't as effective anymore ...

Captem and hand/foot syndrome

Busywoman618
  • By Busywoman618 · New reply 7:42 am
  • Discussion in Chemotherapy and targeted therapies · 12 replies
  • Just finished my 3rd round of captem, had good MRI this week showing over 30% shrinkage in the largest measurable lesion and 50% shrinkage in the 2nd largest lesion. It was also noted that scattered liver ...

Is Chemo a Fraud?

DrYes
  • By DrYes · New reply yesterday at 10:23 pm
  • Discussion in Living with PNET · 125 replies
  • Chemo seems, at best, to add a few years of life to anyone with the PNET form of cancer. Since too many chemo poisons, particularly those administered intravenously, spread their poisonous effects throughout ...

do you recommend PRRT?

rhakimata
  • By rhakimata · New reply yesterday at 2:21 pm
  • Discussion in Radiation therapy · 31 replies
  • Xeloda+temodar is not working any more for me, my doctor is suggesting that i go ahead with PRRT (which I had planned to get prior to x+t). But I am in panic, could anybody share your experiences with ...

The Virus?

teamcc
  • By teamcc · New reply yesterday at 9:59 am
  • Discussion in News and research · 5 replies
  • Does anyone know if THE VIRUS has worked??? The swedes know by now and I for one would like to know ...

Y90

jjllggtt910
  • By jjllggtt910 · New reply yesterday at 8:08 am
  • Discussion in Radiofrequency ablation (RFA) and other liver treatments · 14 replies
  • I have two tumors in liver 2 cm and one tumor 1.1 cm. also have 7 "freckles" as Dr Liu used to say; radiologist says not a candidate for surgery; need to check in with Dr. W. in La. before making decision ...

IS NET INHERITED ILLNESS?

BLOODYNET
  • By BLOODYNET · New reply yesterday at 6:22 am
  • Discussion in Living with PNET · 7 replies
  • Read about MEN and is so confusing. How do i know if husband PNET will be passed to our children?? What should we look out for ...

Standard Uptake Values

teamcc
  • By teamcc · New reply November 23, 2014
  • Discussion in Radiolabeled hormone therapy · 11 replies · Photos
  • Does anyone have written documents saying their uptake is greater than 40 on Ga-68 ...

Update Eleven years surviving Pancreatic Neuroendocrine

nowt
  • By nowt · New reply November 22, 2014
  • Journal · 30 replies · Photos
  • Hi I have written on this site before the history of how I have survived Pancreatic Neuroendocrine Tumours eleven years so far, after an initial diagnosis in 2003 where I was advised to go to a hospice ...

Another question about CAP/TEM

schatz
  • By schatz · New reply November 22, 2014
  • Discussion in Chemotherapy and targeted therapies · 15 replies
  • I really like my oncologist, after all, he's kept me alive for eight years, but he is very reluctant to have me try CAP/TEM. I've gone through Afinitor (worked, but too many side effects) and Sutent (didn't ...

zoelucy

zoelucy
  • By zoelucy · New reply November 21, 2014
  • Discussion in Welcome / Newly diagnosed · 6 replies
  • Hi, have just found this forum, so hope to make some new friends. I live in the UK, and I am a member of the netpatientfoundation forum in the UK. Two years ago, had a distal pancreatomony, spleen removal ...

FasterCures social media "Thunderclap" initiative

MNMKONA
  • By MNMKONA · New reply November 20, 2014
  • Journal · 6 replies
  • For those unfamiliar with this organizations efforts: http://www.fastercures.org/ I've been following Michael Milken' efforts for a short while now and I'm very impressed with his down to earth, dogged ...

How did you overcome the side effect of Oxycontin?

Vanessa-CN
  • By Vanessa-CN · New reply November 20, 2014
  • Discussion in Living with PNET · 1 reply
  • My dad has taken Oxycontin for more than 4 months now. Now he has nausea and vomiting everytime when he wants to eat. Dizzy. Extreme drowsiness. Do you also have these symptoms? How do you overcome? Please ...

Back from Basel

snorkels
  • By snorkels · New reply November 20, 2014
  • Discussion in Radiolabeled hormone therapy · 1 reply
  • Hello PNET friends, My husband and I are just back from Basel where he underwent his first PRRT treatment with Y-90. We had a great experience, the staff at the University of Basel hospital could not ...

Log in to see more

Don't have an Inspire account? Sign up now!

Forgot password?

Things you can do

Discussion topics

Clinical Trial Information

Information about clinical trials from PANCAN

Our PNET Community Partners

PNET Support Community Partners

Community leaders

Inspire others

About this community

Inspire connects patients, families, friends and caregivers for support and inspiration.

Read more about our work