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Hives

Chrisparke
  • By Chrisparke · Posted 9:28 am
  • Discussion in Living with PNET · 0 replies
  • I think I have hives. They are quite mild, don't itch too much. Just wondering if anyone else has experienced this and whether they are related to our disease, medication or something else ...

Anybody else experiencing horrible night sweats??

sunny461
  • By sunny461 · New reply 9:01 am
  • Discussion in Living with PNET · 1 reply
  • Is anybody else experiencing horrid night sweats ...

inflamation and GA ^* DOTATOC results?

sunny461
  • By sunny461 · New reply 7:10 am
  • Discussion in News and research · 6 replies
  • My pcp said that this scan is picking up inflammation and I was experiencing an acute bout of pancreatitis during this scan - in fact had ERCP the next morning to have a pancreatic stent placed. So just ...

Feeling positive!

stacheusa
  • By stacheusa · New reply yesterday at 11:29 pm
  • Journal · 1 reply
  • Finally a test with good news! 2 cycles of CapTem and hubbies CgA has dropped to 750 from 1480. (0-95 normal range for our lab). Hoping next month MRI shows similar happy results. He is feeling better ...

What is meant by tumor reduction

johnnysmooth
  • By johnnysmooth · New reply yesterday at 11:27 pm
  • Discussion in Living with PNET · 7 replies
  • Ok, been dealing with gastrinoma PNET for 5+ yrs and have had several different treatments. Currently it's temedor which has stopped progression. But what I read here time and time again is how people ...

SO WHY AND WHEN SHOULD YOU GET A GALLIUM 68 / 68GA / GA68 / DOTATOC SCAN?

chipofbags
  • By chipofbags · New reply yesterday at 9:59 pm
  • Discussion in Radiolabeled hormone therapy · 7 replies
  • I'm seeing more and more people posting here saying they've received this scan. While it's still only in trial, only two short years ago it was far more difficult to get. So, I was thinking it would be ...

wondering

camaro1
  • By camaro1 · New reply yesterday at 6:17 am
  • Discussion in Living with PNET · 18 replies
  • My husband has been diagnosed about a year ago. He get 1 shot of octreotide a month. Resently he has been having stomach pain. It doesn't seem to ever go away and gets worse when he eats. He has tumors ...

feeling like a need a Zebra buddy. . .

sunny461
  • By sunny461 · New reply March 26, 2015
  • Discussion in Living with PNET · 18 replies
  • Today was a long one. . . After yesterdays GA 68 DOTA TOC scan and an early morning ERCP to get my stent put back in my day ended at my oncologist office. . . The pancreatic tumor - that was 1 on mri ...

KIDNEY STONES & SANDOSTATIN LAR 20 MG

taylor52
  • By taylor52 · New reply March 26, 2015
  • Discussion in Living with PNET · 10 replies
  • Hello everyone. I have been managing my hepatic metastases for almost 2 years (first injection June 2013) now and tumors in liver are stable. I have the usual fatigue post distal pacreatectomy January ...

Effects of Etoposide and Cisplatin

WinterFlower
  • By WinterFlower · New reply March 26, 2015
  • Journal · 9 replies
  • My husband has a PNET that has spread to his liver. He has several tumors on his liver. He was taking Cap/Tem but after two months, he had bad results. The liver tumors grew. He is now going be IV infused ...

just found out

cattcraw2
  • By cattcraw2 · New reply March 26, 2015
  • Journal · 17 replies
  • I have this thing called my chart. where you can go online and see the tests results from your doctors visit. Its handy and you dont have to wait for the dr to call you. Well i was looking thru mine .I ...

Carboplatin/Taxol

GayleS
  • By GayleS · New reply March 26, 2015
  • Discussion in Chemotherapy and targeted therapies · 10 replies · Photos
  • Greetings! I wanted to share some recent results that my husband received after starting a chemo regime of Carboplatin/Taxol combination. I recognize that every P-NET is different, but wanted to share ...

Final entry

Shprdmoon9
  • By Shprdmoon9 · New reply March 26, 2015
  • Journal · 9 replies
  • Medicine has done all it can do for me and now It's time to just go out and live what ever time I may have. Doctors say they can't say how long I have left and I guess it really does not matter at this ...

PRRT on pancreas?

CanadianCate

Postop spleenectomy question

pgiuf
  • By pgiuf · New reply March 24, 2015
  • Discussion in Living with PNET · 2 replies
  • I am wondering how many of you have noticed an elevated platelet count after surgery? I am 1.5 years out and still elevated. Will this be a life long change or will it adjust at some point? Thanks pgiuf ...

Update: Guestbooks

TeamInspire
  • By TeamInspire · Posted March 24, 2015
  • Journal · 0 replies
  • Hello, We are constantly working to improve Inspire by adding features that members find useful and retiring those that members do not. To that end, we have retired the guestbook feature. We understand ...

Affinitor and Temodar for High Grade PNET

PnetAdvocate
  • By PnetAdvocate · New reply March 24, 2015
  • Discussion in Chemotherapy and targeted therapies · 6 replies
  • Hello everyone. Just got back for the oncologist. He put my wife on Affinitor and Temodar for very high grade, metastatic PNET. Anybody have any insight to this drug combo? As I posted in another thread ...

Genome Mapping for Targeted Therapy

PnetAdvocate
  • By PnetAdvocate · New reply March 23, 2015
  • Discussion in Chemotherapy and targeted therapies · 21 replies
  • Good morning. Has anybody done Genome mapping by any of the main laboratories, USA or otherwise? What lab did you use? Did they come up with any matches? Do you feel it helped at all? We are preparing ...

Does anybody have seen Dr. Wolin?

Pattyunicorn
  • By Pattyunicorn · New reply March 22, 2015
  • Discussion in News and research · 11 replies
  • Hi my name is Patty Duval, i live in Charlotte, NC. I was first diagnose on August 2011. I had a wipple surgery on September 2011. Apparently I was cancer free for one year. On February 2013 my MRI showed ...

Newly diagnosed

lje3499
  • By lje3499 · New reply March 22, 2015
  • Journal · 7 replies
  • I was diagnosed with PNET approx 2 months ago. I have 2 good sized tumors in my liver I addition to multiple smaller lesions scattered throughout the liver. The pancreatic tumor is approx 4 cm. I've had ...

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