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Pain after distal pancreatectomy

gra620
  • By gra620 · New reply 10:21 pm
  • Discussion in Living with PNET · 13 replies
  • can anyone who has had a distal pancreatectomy and splenectomy tell me how long the pain in the operation site lasts. I am 6 months past my operation but still got a lot of soreness there. Thanks ...

downside to TACE ???

Michael-PA
  • By Michael-PA · New reply 10:18 pm
  • Discussion in Chemotherapy and targeted therapies · 8 replies
  • We are faced with the need of treatment and looking at another TACE late this week......what treatments have others done after TACE and who is against it. Michael-PA ...

Terry Yakes is why I didn't choose Y-90 PRRT

teamcc
  • By teamcc · New reply 10:06 pm
  • Discussion in Radiolabeled hormone therapy · 21 replies
  • You'll see many posts by me concerning PRRT since I have low grade well differentiated tumors throughout my liver and a 4cm primary in my pancreas. But right from the get-go I got in touch with the widow ...

Some news from my cnet conference

Nichie07
  • By Nichie07 · New reply 9:30 pm
  • Journal · 17 replies
  • Hi, I would like to share some information that I received from the cnet conference in singapore that I attended, with the guest dr. Oberg from Uppsala. Dr. Oberg shared some highlights from the ENETS ...

gallium 68 dotatate at UCLA

stratford
  • By stratford · New reply 9:15 pm
  • Discussion in Living with PNET · 45 replies
  • Hi Everyone, Just got back from sunny California....I had a ga68ct/pet scan done by the research team at UCLA last Monday. The doctors and the nurse doing the contrast procedure were lovely. One of the ...

Clinical Trials for 68Gallium Scans

Here4Now
  • By Here4Now · New reply 6:04 pm
  • Discussion in News and research · 1 reply
  • In another discussion there were some questions about clinical trials for 68Gallium studies. These are the ones I know of available in the US now: U of Iowa with Dr. O'Dorisio: Currently in progress and ...

Reasons why you must see a net specialist!!!

ronnieinsearch
  • By ronnieinsearch · New reply 4:47 pm
  • Discussion in Living with PNET · 13 replies
  • We just came back frim a 9 hr drive to vanderbilt from seeing Dr. Liu one of the most awesome caring dr we've seen in our 7 yr journey!! No it was not good news but it was answers they we needed!! Our ...

CapTem or Carboplatin and Etoposide?

Kenmswiss
  • By Kenmswiss · New reply 1:46 pm
  • Discussion in Chemotherapy and targeted therapies · 7 replies
  • First post here and appreciate any feedback/recommendations. Four years post whipple with heterogeneous pnet with Ki67 varying from 5% at core of tumor to 30-40% in hot spots at periphery- designated ...

Anyone have trans hepatic biliary drain experience

lkg5966
  • By lkg5966 · Posted 3:27 am
  • Discussion in Living with PNET · 0 replies
  • Due or a PNET metastasized to my liver and having a tumor pushing against my biliary duct and creating infection I now have a transhepatic biliary drain. These dreams have been the biggest pain in the ...

PNET, Whipple and the Heat

Bonnie63
  • By Bonnie63 · New reply yesterday at 3:17 pm
  • Discussion in Welcome / Newly diagnosed · 2 replies
  • Hi, does anyone else find they are sensitive to the outdoor heat after having a whipple, or is it just me? Thanks ...

ga 68 at Oschner

stratford
  • By stratford · New reply April 16, 2014
  • Discussion in News and research · 2 replies
  • I was just reading on another site that Dr Woltering's team is getting ga68 for a trial there. Not sure about who is eligible but if your insurance won't pay then you are responsible for paying....couldn't ...

Taking Creon?

Bonnie63
  • By Bonnie63 · New reply April 16, 2014
  • Discussion in Welcome / Newly diagnosed · 19 replies
  • I know that many of you are much further along on your PNET journey than I am, so I'm hoping you can help me along my journey as it relates to digestive enzymes. It was recommended I take one 12,000 unit ...

Chemoembolization and night sweats

Carcinoidwilllose
  • By Carcinoidwilllose · New reply April 16, 2014
  • Discussion in Chemotherapy and targeted therapies · 9 replies
  • My husband has aggressive neuroendocrine tumors, primary was in stomach, removed in 2011. Metastisized to liver and peritoneum, rectum, all lining his insides and all that was removed in 2012. Anyway ...

Virus research funder dies

pnetspouse
  • By pnetspouse · New reply April 16, 2014
  • Discussion in News and research · 5 replies
  • Hi all, not sure if this news has reached the community, but sadly, Vince Hamilton, the American with pnets who gave 2 million Swiss francs to Uppsala University for research into a possible virus cure ...

"A wake-up call from a young e-patient: 'I need to be heard'”

John2
  • By John2 · Posted April 15, 2014
  • Journal · 0 replies
  • From: John Novack, Communications Director, Inspire 4/15/14 Dear members, I am writing to share with you a new guest column in "Scope," the Stanford University School of Medicine's medical blog: "A wake-up ...

Organ growing

dmjoyner89
  • By dmjoyner89 · New reply April 15, 2014
  • Discussion in News and research · 2 replies
  • http://www.cnn.com/2014/04/10/health/tis sue-engineering-success/ I was pleasantly surprised that this sort of thing is also going on in Basel. Lord help me live long enough for Dr. Atala to grow me my ...

Blues Cross Blue Shield PRRT coverage

teamcc
  • By teamcc · New reply April 15, 2014
  • Discussion in Radiolabeled hormone therapy · 10 replies
  • Could anyone help me, I need to show past precedence to be reimbursed for PRRT treatment in Europe, if anyone has had Blue Cross Blue Shield cover them and is willing to let me know I can use this as ...

Everlomus

MJP2009
  • By MJP2009 · New reply April 14, 2014
  • Discussion in Living with PNET · 5 replies
  • CT scans recently showed patchy inisitial pneomonitis on my lungs. Video assisted thoracic wedge biopsy of right lung confirmed hypersensitivity to Everlomus. Now staying off Everlomus and only treatment ...

Dealing with Sutent

RhettsHeir
  • By RhettsHeir · New reply April 14, 2014
  • Discussion in Chemotherapy and targeted therapies · 5 replies
  • My husband has been on Sutent for 2 1/2 years now. He has a widely metastasized pNET.) It seems to be working well. His Chromogranin numbers have moved from 70 to 16. (Chromogranin is the tumor marker ...

Second Opinion at Cedar Sinai

GayleS
  • By GayleS · New reply April 14, 2014
  • Discussion in Chemotherapy and targeted therapies · 13 replies
  • After reading so many positive posts about Dr. Edward Wolin (and Dr. Eric Liu of Vanderbilt), we decided to seek a second opinion for my husband with Dr. Wolin. Unfortunately, he is no longer accepting ...