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What do you wish your doctor knew?

Brian
  • By Brian · New reply 8:24 pm
  • Journal · 576 replies · Photos
  • Dear members, Some of you have seen the story of the schoolteacher who asked students to anonymously finish the sentence, “I wish my teacher knew…” in an effort to get the children to share something ...

Carboplatin/etoposide

JacWilliams
  • By JacWilliams · New reply 7:28 pm
  • Discussion in Chemotherapy and targeted therapies · 4 replies
  • My Dad has advanced high grade PNET (mets to liver and 2 rib bones) and just finished his second round of cap/tem. We will get the results of his CT scan on Tuesday to see if it has done any good. If ...

IV Vit C and other alternative treatments

CanadianCate
  • By CanadianCate · New reply yesterday at 8:39 pm
  • Discussion in Living with PNET · 8 replies
  • Anybody had IV Vit C and / or mistletoe injections? Can you describe how they feel and how you feel afterwards? Also what types of supplements are folks with PNETs using? I'm taking curcurmin, omega 3 ...

New oncolytic virus research: PNET and Pexa-Vec

chipofbags
  • By chipofbags · New reply yesterday at 1:27 pm
  • Discussion in News and research · 4 replies
  • Some interesting immunotherapy / viral research being done @ UCSF (using PNET specifically in the research): http://www.prnewswire.com/news-releases/ sillajen-presents-data-demonstrating-pex a-vec-synergy-with-angiogenesis-inhibito ...

Diagnosis

CanadianCate
  • By CanadianCate · New reply yesterday at 10:28 am
  • Discussion in Welcome / Newly diagnosed · 10 replies
  • Has anyone had an EUS with biopsy? When you get your report back, does it identify the type of PNET e.g.. insulinoma, glucagonoma?? Cate ...

Videos from the 3rd Theranostics World Congress

Globeseek
  • By Globeseek · Posted April 25, 2015
  • Discussion in Living with PNET · 0 replies
  • If you are interested in PRRT or Ga68 or just want to see Dr. O'Dorisio give a great overview on NETs and Treatment - here are 18 videos from the Congress held last month. https://vimeo.com/channels/3wtcp ...

On my own

karaja
  • By karaja · New reply April 25, 2015
  • Discussion in Welcome / Newly diagnosed · 8 replies
  • Why is it, that some people like myself, have to suffer in silence ? Is it because, we understand that even if we draw a great deal of attention to our problems, it still won't help any. It will however ...

Just had BC of Pennsylvania pay for PRRT

Michael-PA
  • By Michael-PA · New reply April 25, 2015
  • Discussion in Living with PNET · 15 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 ...

Inoperanle PNet with pulmonary embolism hx

Donnah6956
  • By Donnah6956 · New reply April 24, 2015
  • Discussion in Welcome / Newly diagnosed · 14 replies
  • Hello, My 60 year old, previously very healthy husband had several pulmonary embolisms in early December. While investigating why he got those, a 5-6 cm mass was found on the head of his pancreas, encircling ...

Help

Emilycohen85
  • By Emilycohen85 · New reply April 23, 2015
  • Discussion in News and research · 16 replies
  • I want to know other people that have info about cancer neuroendocrine liver stage 4 have it or know somebody that has it. My mom has cancer neuroendocrine lung stage 4 and I feel really hopeless. I want ...

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

Kaii
  • By Kaii · New reply April 21, 2015
  • Discussion in Radiation therapy · 16 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 ...

Sutent and tongue discomfort

Kathleen51
  • By Kathleen51 · New reply April 20, 2015
  • Discussion in Living with PNET · 2 replies
  • I have been on sutent for about three weeks. After the first week my tongue started "burning" and I find eating or drinking anything is painful. I eat very small bites which is doable. Does anyone else ...

Affinitor and fever

PnetAdvocate
  • By PnetAdvocate · New reply April 20, 2015
  • Discussion in Chemotherapy and targeted therapies · 3 replies
  • My wife had a medium grade, metastecized PNET which has mutated to high grade. She has tried: CapTem, PRRT Lu 177, Strepto -5FU and Carboplatin Etoposide. All have failed. They recently put her on Affinitor ...

Anyone get Florida Blue to pay for PRRT?

tdp
  • By tdp · Posted April 20, 2015
  • Discussion in Chemotherapy and targeted therapies · 0 replies
  • Considering PRRT (Basel, Rotterdam, Bad Berka, who knows?). Early stages of investigation. Interested in the experiences of anyone insured by Florida Blue in getting it to pay all/part of PRRT cost ...

acinar cell -NET

Annie2603
  • By Annie2603 · New reply April 20, 2015
  • Discussion in Welcome / Newly diagnosed · 7 replies · Photos
  • Hi everybody, my husband was recently ( February 2015) diagnosed with pancreatic acinar cell/ neuroendocrine tumour. Is there any body out there with information on this extremely rare type???? Right ...

Folfirinox for pnets

54pickup
  • By 54pickup · New reply April 19, 2015
  • Discussion in Chemotherapy and targeted therapies · 2 replies
  • Has anyone been on Folfirinox for a year or so then switch to a maintenance drug? What has the out come been? Thanks ...

Jump to High Grade. What's Next?

PnetAdvocate
  • By PnetAdvocate · New reply April 19, 2015
  • Discussion in Chemotherapy and targeted therapies · 4 replies
  • Hello everybody. My wife's original PNET of Ki 67 of 12-15% has made a sizeable jump. She has one new liver met showing a Ki 67 of 90%. Whereas she had off the charts somatostatin expression all along ...

Carboplatin and Etoposide?

jbgsue2
  • By jbgsue2 · New reply April 18, 2015
  • Discussion in Chemotherapy and targeted therapies · 20 replies
  • Hi -- I have a close friend with PNET, and he has asked a few of us to help with research for him. His doctor is suggesting that he try Carboplatin and Etoposide now that first a platinum based therapy ...

Dealing with the emotions

Candles15
  • By Candles15 · New reply April 16, 2015
  • Discussion in Living with PNET · 42 replies
  • I'm a 55 year old wife & mother to young adult girls. In Oct/2014 I was diagnosed with PNET to my pancreas, have Mets to my liver & a couple other areas. I was really positive until the last couple weeks ...

About to have Surgery

LivingwGrace
  • By LivingwGrace · New reply April 15, 2015
  • Discussion in Surgery · 9 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 ...

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