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

Third Treatment Failure: What's next? Suggestions?

PnetAdvocate
  • By PnetAdvocate · New reply 6:13 pm
  • Discussion in Chemotherapy and targeted therapies · 5 replies
  • My wife was diagnosed in May 2013 with a vascular involved, inoperable, 7.0 cm PNET (head). At the time the Gallium 68 (2) showed only 2 small liver mets. Her inoperability is more from the dangerous ...

Measuring tumor reduction

PelicanDave
  • By PelicanDave · New reply 6:07 pm
  • Discussion in Chemotherapy and targeted therapies · 11 replies
  • This is something I had mentioned on another thread, but I think it might deserve a separate discussion and I'm curious about the input and experience of others. I would like to know how the percentages ...

Anybody have any information on using HIFU for PNET?

PnetAdvocate
  • By PnetAdvocate · New reply 5:32 pm
  • Discussion in News and research · 3 replies
  • Just learned about a focused, noninvasive radioablation technique diffuse in ASIA called HIFU. Learned yesterday from an interventional radiologist that it is starting to be used in the west to downstage ...

New mets - resection?

Schevrier
  • By Schevrier · New reply 2:26 pm
  • Discussion in Surgery · 10 replies
  • I was diagnosed with pNET (VIPoma) in Sept 2014 and had a whipple, spleenectomy and RFA to the solitary liver met. I recovered well from surgery and was just starting to feel normal again when 4 liver ...

Liver Load?

DrYes
  • By DrYes · New reply 1:49 pm
  • Discussion in Living with PNET · 5 replies
  • Often discussions about PNET-mets in the liver arrive at deciding on "tumour load". Unfortunately, this term is too ambiguous; it often is taken to mean only the size of the largest tumour. What is more ...

Capecitabine and Temozolomide

stacheusa
  • By stacheusa · New reply 1:34 pm
  • Discussion in Chemotherapy and targeted therapies · 56 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 ...

Today

Cleonie
  • By Cleonie · New reply 12:03 pm
  • Journal · 14 replies
  • Today I lost my husband, my lover, my best friend. I lost him to this cruel disease which chose to deceive us, and hide its presence for so long. Although we understood that his would be a very difficult ...

distal pancreatectomy

WhippleAusten
  • By WhippleAusten · New reply 10:17 am
  • Discussion in Surgery · 3 replies
  • Well here I am. Almost 1 year since I had the tail of my pancreas removed, the adrenal gland on my left kidney (surprise) and my spleen (another surprise). What started as a cyst in my pancreas turned ...

On to Affinitor

Nichie07
  • By Nichie07 · New reply yesterday at 1:26 pm
  • Discussion in Chemotherapy and targeted therapies · 4 replies
  • Hi all, I'd like to update my sister's condition. After going through cocktail of chemo, her last pet scan showed great improvement, all the tumors on the liver have gone and the one in pancreas became ...

Anyone using the Rick Simpson oil protocol?

Anniep61
  • By Anniep61 · New reply January 23, 2015
  • Discussion in News and research · 4 replies
  • I have been researching the use of Rick Simpson cannabis oil to prevent tumor growth and to shrink existing ones. Has anyone been using this treatment instead of radiation or chemo for treating tumors ...

Basel Feb 11

snorkels
  • By snorkels · Posted January 23, 2015
  • Discussion in Radiolabeled hormone therapy · 0 replies
  • Is anyone else going to be treated with PRRT on Basel on Feb 11? I would be interested in meeting up with other spouses/support members. My husband is getting his second treatment. Thanks, Snorkels ...

anyone with rash issues

Michael-PA
  • By Michael-PA · New reply January 23, 2015
  • Discussion in Living with PNET · 14 replies
  • Sherrie has been having problems with rashes the last couple of weeks, looks like hives more or less and mostly on her legs. They come and go and she is complaining about being very itchy. She also started ...

Temsirolimus and Bevacizumab

chipofbags
  • By chipofbags · Posted January 23, 2015
  • Discussion in Chemotherapy and targeted therapies · 0 replies
  • 2 more drugs with unpronounceable names for your lexicon. At first I thought they were a pair of monsters from a Godzilla movie. Have seen these drugs and their trials mentioned in presentations but didn't ...

PNET with Liver Metastasis

PNET
  • By PNET · New reply January 22, 2015
  • Discussion in Living with PNET · 2 replies
  • Hello All, I had Whipple in Sept 2013 for removal of Primary NET in head of Pancreas and after that diagnosed with multiple (3) lesions in Liver (right lobe) suggesting metastasis. I had undergone DOTA ...

PRRT in Basel, Switzerland...timing for response?

GayleS
  • By GayleS · New reply January 22, 2015
  • Journal · 14 replies · Photos
  • Good Morning, I just sent a "petition" to Dr. Jan Müller, at the University of Basel Hospital requesting consideration of PRRT treatment for my husband (diagnosed with a P-Net 10/2012, now with liver ...

Increased tooth decay

FloraCarver
  • By FloraCarver · New reply January 21, 2015
  • Discussion in Living with PNET · 3 replies
  • For two years in a row I have had to have a lot of dental work, I was diagnosed with a VIPoma pNET with mets to the liver in February 2014. Just went for my 6 month check up and was told there is rapid ...

Colitis and Captem?

Busywoman618
  • By Busywoman618 · New reply January 21, 2015
  • Discussion in Chemotherapy and targeted therapies · 2 replies
  • Just finished colonoscopy and gastro doctor discussed it is colitis. He is thinking it may be chemical colitis, caused by chemo. I noticed one of the symptoms after my first month on Captem. And then ...

PRRT and Tastebuds

snorkels
  • By snorkels · New reply January 21, 2015
  • Discussion in Chemotherapy and targeted therapies · 4 replies
  • Hello, Does anyone have the experience that PRRT changed the way food tastes? My husband had Y90 treatment in November and he has become intolerant of salty foods. He has a general lack of appetite, so ...

New symptoms

Dg2014
  • By Dg2014 · New reply January 19, 2015
  • Discussion in Living with PNET · 1 reply
  • I had a Whipple to remove my non-functioning PNET 3 years ago. There were some lymph nodes tested positive after surgery. 8 were positive out of 39 sampled. Low Ki. I've been living relatively symptom ...

What surgeons today are operating the 'inoperable' cases

PnetAdvocate
  • By PnetAdvocate · New reply January 19, 2015
  • Discussion in Surgery · 7 replies
  • Hello all. We are two years out from DX of an 'inoperable' PNET and have had three systemic therapy failures. (See my other post please). Docs are talking now about risking surgery with extensive vascular ...

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

About this community

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

Read more about our work