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PNET

jimlucci
  • By jimlucci · New reply 4:16 pm
  • Discussion in Surgery · 16 replies
  • Hi All: We are at a crossroads. Jim has a tumor on the tail of his pancreas which is 3cm in size with innumerable liver mets. No other evidence of disease except at these 2 spots(albeit the worst spot....liver ...

pancreatic duct stricture

CanadianCate
  • By CanadianCate · New reply 4:11 pm
  • Discussion in Welcome / Newly diagnosed · 7 replies
  • just saw a surgeon at a liver and pancreas cancer assessment unit in Ottawa. They looked at my scans and at the main duct stricture that is causing tissue to atrophy upstream of it. The CT and MRI have ...

DPD and Cap/Tem

maryeileen
  • By maryeileen · New reply 11:07 am
  • Discussion in Advocacy and awareness · 4 replies
  • http://www.ncbi.nlm.nih.gov/pubmed/10099 659 I recently start Cap/Tem on January 6, 2014...I took only one days dosage...which was 1500mg in the morning and 1500 mg at night. At 3am I woke up with the ...

I am a new Member

girlygirlq
  • By girlygirlq · New reply yesterday at 10:45 pm
  • Discussion in Welcome / Newly diagnosed · 9 replies
  • I was diagnosed January 2015 with Metastic Pancreatic Neuroendocrine Carcinoma. I have a tumor at the tail of my pancreas and several large tumors in my liver. I just had my first round of Chemo. I was ...

PRRT vs. Surgery when both are options

PSH
  • By PSH · New reply yesterday at 7:33 pm
  • Discussion in Surgery · 4 replies
  • It’s been a while since I’ve posted anything here, but I actively checking the daily posts with great interest. I guess I’m writing to ask the community if any of you have been in the position to have ...

What's comes next?

GreenSideUp
  • By GreenSideUp · New reply February 25, 2015
  • Discussion in Welcome / Newly diagnosed · 22 replies
  • I am new to this group. I was diagnosed with a small PNET tumor 1-1/2 years ago by my GI doc who found it when he did an endoscopic ultrasound. He referred me to a surgeon who did an octreotide scan ...

Cannibus and Neuroendocrine cancer

rayala
  • By rayala · New reply February 25, 2015
  • Discussion in Chemotherapy and targeted therapies · 27 replies
  • I have read many articles on here regarding Cannibis use as a cancer cure. I have been to Rick Simpsons page and read many articles that seem to concur that it does kill cancer cells. But according to ...

Emotional Support

LivN2Bcafree
  • By LivN2Bcafree · New reply February 24, 2015
  • Discussion in Welcome / Newly diagnosed · 15 replies
  • Hi Folks, I am a 19 year survivor of PNET secondary to MEN1 (genetic endocrine disorder that predisposes me to neuroendocrine disorders and tumors/cancers). I am struggling with what exactly to tell my ...

Any good PNET doctors in Austin

stekada
  • By stekada · New reply February 24, 2015
  • Discussion in Living with PNET · 4 replies
  • Just a quick history. My husband 62, diagnosed April 2013 with stage 4 PNET, very fit and asymptomatic, had tumor growth, so has been on Sutent for about 14 months (and doing well - stable). We live in ...

My first entry

GreenSideUp
  • By GreenSideUp · New reply February 22, 2015
  • Journal · 15 replies
  • I am new to this group. I was diagnosed with a small PNET tumor 1-1/2 years ago by my GI doc who found it when he did an endoscopic ultrasound. He referred me to a surgeon who did an octreotide scan ...

I'm a new member

Tita1963
  • By Tita1963 · New reply February 22, 2015
  • Discussion in Welcome / Newly diagnosed · 5 replies
  • Hi. I was diagnosed with neuroendocrine carcinoma in September 2014. I had a PET scan and it showed that it had spread to my liver. The PET scan also showed a tumor in my left breast. I am dealing with ...

Bile Duct Stent

wdglasgow
  • By wdglasgow · New reply February 22, 2015
  • Discussion in Living with PNET · 3 replies
  • Hi, I am new to this site, so hello and thanks for all the good info. I am a 57 year old with Neuroendocrine Pancreatic tumor 8 cm in head of pancreas. Diagnosed in April 2014, at that time I had a stent ...

itching

44556633
  • By 44556633 · New reply February 22, 2015
  • Discussion in Living with PNET · 6 replies · Photos
  • Does anyone have severe itching to the point of wearing gloves ,like i have Jerry do ,he starts wounds just from itching ,head to ankle , not foot ,which he will most likely lose ,his last limb ,due to ...

Finding mets in liver

Jynnmae
  • By Jynnmae · New reply February 20, 2015
  • Discussion in Living with PNET · 11 replies
  • My tumors don't light up with pet or octreotide scan my liver has extensive metastic disease according to my biopsy and the dr seeing them during surgery my primary tumor did not light up either and it ...

Has anyone used hyperthermia for their cancer

Bonnie63
  • By Bonnie63 · New reply February 19, 2015
  • Discussion in Living with PNET · 15 replies
  • Hi all. Just curious if anyone on the site has used hyperthermia treatments to treat their cancer. If so, what impact did it have on your particular situation? How long and how often did you have the ...

ki-67 now 30%

Michael-PA
  • By Michael-PA · New reply February 19, 2015
  • Discussion in Chemotherapy and targeted therapies · 5 replies
  • Sherrie had rods inserted in femur and hip to make them stable due to bone mets deteriorating bones. This is the first time we have ever been able to get tissue to sample rather than FNA via endo. The ...

First Cycle of Cap/Tem and feeling positive

stacheusa
  • By stacheusa · New reply February 18, 2015
  • Discussion in Living with PNET · 7 replies · Photos
  • Wanted to thank everyone that posted personal experience and/or Spouse experience on Cap/Tem. My husband just finished his first cycle. He is on a 28 day 14 on 14 off. He is in Day 3 of rest. Your postings ...

Embolization options

Kaii
  • By Kaii · New reply February 18, 2015
  • Discussion in Chemotherapy and targeted therapies · 12 replies
  • I've learned so much useful information from this community so I ask this question. I scheduled for my first bland embo. in Feb and just wondering any one have experience with bland/chemo/radio embolizations ...

Ronnieinsearch

ronnieinsearch
  • By ronnieinsearch · New reply February 18, 2015
  • Discussion in Living with PNET · 13 replies
  • Sad to say but husband lost his battle Wednesday January 28th He fought long and hard for 8 years!!! Horrible disease ...

PRRT contacts & cost update(01/26/2015)

Kaii
  • By Kaii · New reply February 18, 2015
  • Discussion in Radiation therapy · 13 replies
  • I just want share the information gathered about the PRRT. If there's more please feel free to add for those who may need the treatment in the future. I personally not yet treated but may need sooner ...

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