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Novartis announcement

  • By dmjoyner89 · New reply yesterday at 9:13 pm
  • Discussion in News and research · 1 reply
  • Just got this link from the Caring For Carcinoid newsletter... 5/04/20/novartis-leader-targeted-therapi es-looking-prime-immune-system-battle-ca ncer/cV75a7dyPF4ZnoqtCQoUsM/story.html ...

Budwig Protocol

  • By littlebigjohn · New reply yesterday at 8:40 pm
  • Discussion in Advocacy and awareness · 17 replies
  • Just wondered if anyone has researched the Budwig Protocol, developed by Johanna Budwig (1908-2003), physicist, biologist, doctor, pharmacologist, nominated 7x for the Nobel Prize. (By the way, she died ...

distal pancreatectomy

  • By WhippleAusten · New reply yesterday at 4:17 pm
  • Discussion in Surgery · 9 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 ...

About to have Surgery

  • By LivingwGrace · New reply yesterday at 3:49 pm
  • Discussion in Surgery · 11 replies
  • Diagnosed 3 weeks ago and about to have surgery. Remove low grade tumor and spleen. Any advice about surgery or how to best recover ...


  • By Kaii · New reply yesterday at 9:14 am
  • Discussion in Chemotherapy and targeted therapies · 5 replies
  • News from Carcinoid Cancer Foundation! NEXT GENERATION OF PRRT AGENTS TO BE DEVELOPED A novel treatment against neuroendocrine tumors will be the focus of a new partnership between RadioMedix, a clinical ...

PRRT contacts


Introduction - Neuroendocrine Tumour (NET)

  • By PLAMBA · New reply yesterday at 7:04 am
  • Discussion in Welcome / Newly diagnosed · 6 replies
  • Hi All, My name is Pradeep Lamba and I am based in New Delhi, India. I am not sure I am in the right group. Kindly also advise if there is a more appropriate group I can join. Background I have recently ...

Sandostatin and Diarrhea

  • By amyrainbow · New reply May 21, 2015
  • Discussion in Living with PNET · 1 reply
  • Hey All - My mom has been on monthly sando shots for about 6 years (VIPoma on her pancreas with mets to both lobes of the liver). Up until recently it controlled her symptoms well and she had slight tumor ...

Even some surgeons don't know that PNETs differ from pancreatic cancer

  • By eltoro · New reply May 21, 2015
  • Journal · 6 replies
  • -west/fawkner-woman-battles-pancreatic-c ancer-and-raises-awareness-money-for-cli nical-trials/story-fnrvvn43-122735164762 6 The surgeon told her she was inoperable ...

Just had BC of Pennsylvania pay for PRRT

  • By Michael-PA · New reply May 19, 2015
  • Discussion in Living with PNET · 21 replies
  • It can be very hard to navigate through the insurance maze of treating NET's....just to let you know that we just got paid for treatment that happened in July and are awaiting $$$ for treatment in late ...

I am so humbled ... Thank you .... Team CC

  • By teamcc · New reply May 19, 2015
  • Discussion in Radiolabeled hormone therapy · 4 replies
  • For all of you that have posted, given an opinion, described treatment results I so humbly thank you. Infact I've always looked at my treatment as a team effort(no pun intended!). I'm healthy to race ...

New drug going into phase 1 trial: DCR-MYC

  • By chipofbags · New reply May 19, 2015
  • Discussion in Chemotherapy and targeted therapies · 2 replies
  • “Based on the clinical activity seen in two out of three patients with PNET, evidence of a complete metabolic response (based on FDG-PET) and a partial response (based on RECIST criteria), as well as ...

everolimus Pill

  • By Emilycohen85 · New reply May 18, 2015
  • Discussion in News and research · 4 replies
  • My mom Doctor recommended everolimus for her neuroendocrine lung cancer. But I am not sure if that will work. She is stage 4. Has anybody else took that pill before and give me some feedback? Thanks ...

Low-grade pneumonitis and everolimus / Afinitor?

  • By chipofbags · New reply May 17, 2015
  • Discussion in Chemotherapy and targeted therapies · 3 replies · Photos
  • So I was on evero for about a year with negligible side effects, and had no breathing difficulty (such as from pneumonitis) during normal activity. However, I would say that my running ability (trail ...

NET Conference in LA

  • By JamieLacroix4880 · New reply May 16, 2015
  • Discussion in News and research · 5 replies
  • Hello, I wanted to share some information about our upcoming NET Patient & Caregiver Educational Conference that we are co-sponsoring with LACNETS and Cedars-Sinai Medical Center on June 27th in Los Angeles ...

Help with a IPMN mentioned one time on scan

  • By rockyroad12 · New reply May 16, 2015
  • Discussion in Watchful waiting · 8 replies
  • I had a different type of cancer and have been going thru cat scans for the past 3 years, On one of my cat scans the radiologist mentioned a very small mm side-branch IPMN and commented that it was stable ...

hospice for possible pancreatic cancer

  • By Twinkiemom · New reply May 16, 2015
  • Discussion in Welcome / Newly diagnosed · 1 reply
  • My dad was hospitalized this week, and found to have a mass on his liver, 7 X 8 cm. It turns out that the hospital had found a much smaller one in Jan., but neglected to tell the family or his doctors ...


  • By taylor52 · Posted May 16, 2015
  • Discussion in Hormone therapy · 0 replies
  • Hello all - I am reaching out today to find out if anyone is in the same boat as me. Novartis recently changed the Sandostatin LAR kit without notification to myself or the nurse who comes to my home ...

Hernia Repair With Surgical Mesh

  • By Dstaud · New reply May 16, 2015
  • Discussion in Surgery · 26 replies
  • As many of us have had Whipple surgery I'm wondering how many of us have experienced large ventral hernia along the surgical incision? I have a hole in my abdominal wall the size of a baseball. I have ...

First dr meeting...what to ask?

  • By CanadianCate · New reply May 16, 2015
  • Discussion in Living with PNET · 3 replies
  • I have my first specialist appt this Friday. I have in the last little while learned that the 3 lesions on my pancreas appear to have the same staining pattern as my lung NET (2010) leading the pathologist ...

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