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Dating w/ Stage 4 PNET???

SomeGuyInTX
  • By SomeGuyInTX · New reply yesterday at 9:47 pm
  • Discussion in Living with PNET · 8 replies
  • So, I have Stage 4 PNET. Diagnosed in Feb. 2013 and I'm really doing rather well. Gained weight back (almost too much), working full time, very active, taking Sutent so I don't have to do any chemo or ...

Afinitor / everolimus and its side effects

chipofbags
  • By chipofbags · New reply yesterday at 9:16 pm
  • Discussion in Chemotherapy and targeted therapies · 11 replies
  • I've seen plenty of posts here mentioning side effects from Afinitor, in some cases pretty pronounced. I may or may not be on it presently due to a blind trial (day 6). This is kind of a weird drug to ...

Congratulations! You have herpes! You're cancer free!

teamcc
  • By teamcc · New reply yesterday at 9:00 pm
  • Discussion in News and research · 4 replies
  • Please google "herpes cures cancer". Thx's Team CC ...

sandostatin

barb33
  • By barb33 · New reply yesterday at 8:10 pm
  • Discussion in Hormone therapy · 28 replies
  • It's my understanding that sandostatin is considered a hormone therapy since it manipulates some hormones. Is anyone taking it and if so are you having positive results and do you have any side effects ...

gallium 68 dotatate at UCLA

stratford
  • By stratford · New reply yesterday at 7:07 pm
  • Discussion in Living with PNET · 63 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 ...

Reasons why you must see a net specialist!!!

ronnieinsearch
  • By ronnieinsearch · New reply yesterday at 5:39 pm
  • Discussion in Living with PNET · 14 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 ...

Pain after distal pancreatectomy

gra620
  • By gra620 · New reply yesterday at 5:03 pm
  • Discussion in Living with PNET · 16 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 ...

CapTem or Carboplatin and Etoposide?

Kenmswiss
  • By Kenmswiss · New reply April 23, 2014
  • Discussion in Chemotherapy and targeted therapies · 15 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 ...

GA-68 clinical trials coming to NOLANETS

Bonnie63
  • By Bonnie63 · New reply April 22, 2014
  • Discussion in Welcome / Newly diagnosed · 1 reply
  • Hi all, just want to advise for those who don't know yet, a GA-68 clinical trial will be available this summer at NOLANETS. It's open for approximately 250 patients for 5 years at a cost of approximately ...

GA-68

BeebNC
  • By BeebNC · New reply April 22, 2014
  • Discussion in Welcome / Newly diagnosed · 2 replies
  • I have my 1st appointment with Dr. Liu coming up. I was told by his office that the GA68 is no longer available at their facility. Exact words were "that study is over". What happens in a case where the ...

Some news from my cnet conference

Nichie07
  • By Nichie07 · New reply April 22, 2014
  • Journal · 18 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 ...

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

teamcc
  • By teamcc · New reply April 18, 2014
  • Discussion in Radiolabeled hormone therapy · 22 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 ...

downside to TACE ???

Michael-PA
  • By Michael-PA · New reply April 18, 2014
  • 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 ...

Clinical Trials for 68Gallium Scans

Here4Now
  • By Here4Now · New reply April 18, 2014
  • 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 ...

Anyone have trans hepatic biliary drain experience

lkg5966
  • By lkg5966 · Posted April 18, 2014
  • 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 April 17, 2014
  • 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 ...

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