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  • By teamcc · New reply 2:06 pm
  • Discussion in News and research · 5 replies
  • I guess this type of sandostatin has just received FDA approval ...

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

  • By GayleS · New reply 10:25 am
  • Journal · 7 replies
  • 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 ...


  • By lkg5966 · New reply yesterday at 9:01 pm
  • Journal · 29 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 ...


  • By stacheusa · New reply yesterday at 6:58 pm
  • Discussion in Living with PNET · 8 replies
  • Has anyone experienced hiccups that just won't go away? My hubby has had them for just over 24 hours. Tried drinking cold water, holding his breath and pressure on his eyebrows. Hard to sleep and eat ...

One of our own

  • By rootdoc · New reply yesterday at 2:07 pm
  • Discussion in Living with PNET · 3 replies
  • It is with a heavy heart that I report the passing of one of the members of the Inspire PNET group. Slugger462 passed into eternal rest over the weekend. May his soul rest in peace. Amen ...

PRRT Decision

  • By TimR · New reply yesterday at 6:46 am
  • Discussion in Radiation therapy · 9 replies
  • I'm a five year from diagnosis survivor, white male, 71 years old, with the primary in the tail of the pancreas, non-functioning, and 50-60% tumor load in the liver at diagnosis. I received the standard ...

Octreotide and clay colored

  • By jimlucci · New reply yesterday at 3:20 am
  • Discussion in Hormone therapy · 15 replies
  • Hi All- Jim has had dose # 3 of Otreotide short acting subcutaneous injection this am. He was unable to tolerate last year at diagnosis due to severe abd pain/diarrhea, so we discontinued it. We decided ...

Back from Basel

  • By snorkels · New reply December 16, 2014
  • Discussion in Radiolabeled hormone therapy · 2 replies
  • 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 ...

Surgeon question...

  • By pcsweene · New reply December 16, 2014
  • Discussion in Surgery · 1 reply
  • Has anybody seen the pancreas surgeons at Sloan Kettering? Any thoughts or feedback on Brian Untch, Sam Yoon, or Peter Kingham? I am going for a consult there and was told to see one of these three ...

The Right to Die

  • By TNTGSO · New reply December 15, 2014
  • Discussion in Advocacy and awareness · 16 replies · Photos
  • This is a tough subject for discussion and something I cannot, have not successfully had with family. The right to die public discussion has been out there but not to the extent that I would expect. As ...

Phase I, II of Temozolamide and Pazopanip

  • By tjcornelius · Posted December 14, 2014
  • Discussion in News and research · 0 replies
  • Has anyone had experience with a phase I, II study using Temozolamide and Pazopanib? Apparently the Pazopanib operates in the same way as sunitinib to keep tumors stable and Temozolamide has the potential ...

Nets in anus rectum

  • By Irishjackie · New reply December 12, 2014
  • Discussion in Watchful waiting · 14 replies · Photos
  • I am supposed to start a new chemo chemtem shortly, but with my last 2 chemos I found constipation a huge problem, once nearly killed me got so backed up, I have a big tumour down below and I know another ...

Results for Xeloda/Temodar CAP/TEM Combo

  • By bmichalski · New reply December 11, 2014
  • Discussion in Chemotherapy and targeted therapies · 77 replies · Photos
  • For those of you who have tried the CAP/TEM combo and found it to be helpful with reducing the size of the tumors, how long did it take for the tumors to begin to shrink? After 3 cycles of the combo ...

Andrea Sloan Compassionate Use Reform and Enhancement Act

  • By MNMKONA · Posted December 11, 2014
  • Journal · 0 replies
  • Requiring drugmakers to create and disclose an expanded access policy in exchange for receiving breakthrough therapy designation. A fitting tribute to Andrea Sloan! Here it is on ...

The Virus?

  • By teamcc · New reply December 10, 2014
  • Discussion in News and research · 12 replies
  • Does anyone know if THE VIRUS has worked??? The swedes know by now and I for one would like to know ...

How were you diagnosed?

  • By Ennisklug · New reply December 9, 2014
  • Discussion in Advocacy and awareness · 29 replies
  • Just curious. 1)From the onset of symptoms, how long till you were diagnosed? If you found out you had pnet without symptoms, how was it diagnosed? 2)What was your age upon symptoms appearing and diagnosis ...

Advice to the newly diagnosed

  • By Schevrier · New reply December 7, 2014
  • Discussion in Welcome / Newly diagnosed · 16 replies
  • I'm newly diagnosed with pNET and soaking up as much information as I can. If you could go back to your newly diagnosed self, what advice would you give ...

The Truth About Cancer

  • By Bonnie63 · New reply December 7, 2014
  • Discussion in Living with PNET · 30 replies
  • Don't know if any of you have seen this, but you might want to watch. It's pretty interesting. ode1.php ...

Help With Cap/Tem

  • By jillfa · New reply December 5, 2014
  • Discussion in Chemotherapy and targeted therapies · 18 replies
  • Hi- I started the Xeloda part today and threw up ten minutes after taking it. I took a Zofran a but before but still couldn't keep it down. I haven't eaten or drank anything yet but have to take 3 more ...

PRRT with very high liver load

  • By ra_sa123 · New reply December 5, 2014
  • Discussion in Chemotherapy and targeted therapies · 12 replies
  • Hi all, I hit upon this forum a couple of days back and thanks everyone for sharing so much information. My mother had her first PRRT treatment 3 weeks back. She went into the treatment at extremely low ...

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