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Help me find a good Oncologist for my husband

  • By Sheeljan · New reply 12:23 pm
  • Discussion in Chemotherapy and targeted therapies · 22 replies
  • Hello Everyone, My husband and I live in Northern Virginia, and he was diagnosed with PNET on 2/11/2013 after an untreated Pulmonary Embolism and DVT sent him to the hospital. A full pelvic CT showed ...

Death with dignity

  • By teamcc · New reply 6:28 am
  • Discussion in Living with PNET · 18 replies
  • I'm feeling good and traing hard as a triathlete....form the very start none of what my American doctors made sense. In pfact I identified my own illness after years of blood tests I simply did a few ...


  • By JMS65 · New reply 5:41 am
  • Discussion in Living with PNET · 8 replies
  • Is there anyone in the forum who has VIPoma? I do. In June, 2013 I had a liver resection, distal pancreatectimy, and splenectomy. The tumor originated in the pancreas and matastasized to my liver. The ...

Results for Xeloda/Temodar CAP/TEM Combo

  • By bmichalski · New reply yesterday at 4:30 pm
  • Discussion in Chemotherapy and targeted therapies · 49 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 ...

Compassionate Use Matching Service/Social Network

  • By MNMKONA · New reply yesterday at 1:26 pm
  • Journal · 12 replies
  • "Why Innovative Drug Access Can't Wait" I have been moved lately (more so than usual) in reading many threads & posts from people expressing frustrations related to the long process of drug development ...

Prayers for all

  • By rootdoc · Posted October 18, 2014
  • Discussion in Living with PNET · 0 replies
  • I am running the Myrtle Beach half marathon in the morning. I will be thinking and praying for many people while running the race, especially my father (long-term prostate and bladder cancer survivor ...


  • By snorkels · New reply October 17, 2014
  • Discussion in Chemotherapy and targeted therapies · 27 replies
  • Has anyone gone to Uppsala for PRRT? We are contemplating this for my husband if we can swing the cost. Any feedback on travel, what to bring, surprises they encountered, etc.. Thanks so very much ...

Medicare and Testing, Meds,etc.

  • By Bonnie63 · New reply October 17, 2014
  • Discussion in Living with PNET · 26 replies
  • Hi all. I'm not medicare eligible just yet, but will be next year. I'm retired and took my company healthy insurance with me and have had no problem with the insurance co (BC/BS) authorizing and paying ...

New to the group

  • By Cgorman814 · New reply October 16, 2014
  • Discussion in Welcome / Newly diagnosed · 2 replies
  • Hi, I am new and have joined because my 75 year old mother in law has been diagnosed with stage IV neuroendrocrine pancreatic carcinoma. The tumor is about the size of a lemon on the tail of her pancreas ...

No Terms of Engagement fighting the battle nearly twelve years

  • By nowt · Posted October 16, 2014
  • Journal · 0 replies · Photos
  • Hi The first prognosis in 2003 was that I could only receive palliative care or go to a hospice. As you know I adamantly refused to accept that prognosis. On the day of diagnosis I declared war on cancer ...

PNET and Dialysis

  • By dgrotta · New reply October 16, 2014
  • Discussion in Living with PNET · 5 replies
  • Alas, my kidneys are shot. Next month, I will have a fistula installed in my arm, in preparation for home dialysis. It'sa scary time, even more so than when I was diagnosed with PNET and had an 8-hour ...

Wait and See

  • By pnetgrammy · Posted October 16, 2014
  • Discussion in Watchful waiting · 0 replies
  • I just finished by first CT since returning from Vanderbilt and advised to stay off of chemo until tumors grow or I develop symptoms. Because my pancreatic net (1.6 centimeters) is extremely indolent ...

I'm not going to wait for Friday any longer

  • By stacheusa · New reply October 16, 2014
  • Journal · 1 reply
  • pNet stinks! Just returned from long planned for vacation. It is clear there is a change coming. Tried to ignore recent test results, 3 new liver mets and bone marrow invasion in one of the larger sacral ...

LAR vs daily octreotide

  • By Gandkeds · New reply October 15, 2014
  • Discussion in Hormone therapy · 3 replies
  • Can anyone weigh in on daily octreotide injections vs LAR. I've been off Sando for a year and a half while on an Affinitor study. My tumors grew 20% so I was taken off the study. Now my Dr. Wants me back ...

New to PNET/Third MRI

  • By marypricej · New reply October 14, 2014
  • Journal · 3 replies
  • I had my third MRI on 9/20/2014 and the follow-up on 9/29/2014. Great news, everthing is negative to date. the liver and kidneys are clear. As stated in my fist post I had the whipple procedure on 12/9/2013 ...

Can Core Biopsy Cause Disease to Spread? Genetic sequencing.

  • By jillfa · New reply October 14, 2014
  • Discussion in News and research · 15 replies · Photos
  • Hi- I'm scheduled to have a core biopsy this week so I can have genetic sequencing done. Is there any evidence that biopsies can cause disease to spread? Or the liklihood of it? Who has had genetic sequencing ...

Insional hernia

  • By SailorDoug · New reply October 14, 2014
  • Discussion in Living with PNET · 3 replies
  • I have developed a insional hernia from my distial 7years ago. Has anyone else had this complication ...

Update Eleven years surviving Pancreatic Neuroendocrine

  • By nowt · New reply October 14, 2014
  • Journal · 11 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 ...

scan results Cannabis Oil No Chemo

rocky9962 (Inactive)
  • By rocky9962 (Inactive) · New reply October 13, 2014
  • Discussion in Living with PNET · 21 replies
  • Here are my last scan results, no chemo pills for 10 months now, only Cannabis Oil, Turmeric and supplements. CT CHEST ABDOMEN PELVIS W CONTRAST - Details Learn More About this test This page provides ...

Efficacy of Sutent?

  • By JMS65 · New reply October 13, 2014
  • Discussion in Chemotherapy and targeted therapies · 7 replies
  • I was diagnosed with VIPoma in July of 2012. After a distal pancreatectimy, liver resection, and splenectomy, I was placed on Affinitor, because we were not able to remove all the tumors on the margins ...

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