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Cannibus oil

valenti
  • By valenti · New reply 11:19 am
  • Discussion in News and research · 10 replies
  • Has anyone used or are familiar with Cannibus Oil and it's treatment/response with carcinoid and other cancers ...

PD-1, PD-L1 and other Immunotherapy Agents

PnetAdvocate

Any Miracles on CapTem

stekada
  • By stekada · New reply 4:31 am
  • Discussion in Chemotherapy and targeted therapies · 11 replies
  • I know that many of you have had significant shrinkage of tumours on CapTem, but just wondering what your starting point was. My husband has just had his first cycle of Cap Tem, (after 17 months on Sutent ...

Struggling with mental aspect of this disease

jimlucci
  • By jimlucci · New reply yesterday at 8:56 pm
  • Discussion in Living with PNET · 9 replies
  • I am a caregiver and am looking for advice on how best to manage the emotional ups and downs that goes along with this awful disease. My Zebra is struggling with the mental part of what goes along with ...

Budwig Protocol

littlebigjohn
  • By littlebigjohn · New reply yesterday at 3:35 pm
  • Discussion in Advocacy and awareness · 39 replies
  • Just wondered if anyone has researched the Budwig Protocol, developed by Johanna Budwig (1908-2003), physicist, biologist, doctor, pharmacologist, nominated 7x for the Nobel Prize. (By the way, she died ...

PRRT

Chrisparke
  • By Chrisparke · Posted yesterday at 1:32 pm
  • Discussion in Living with PNET · 0 replies
  • After a year on CAPTEM with great results, my last scan showed some tumor growth in the liver. My doctor suggested Affinitor and Sutent which met with an unenthusiastic response from me, and honestly ...

do you recommend PRRT?

rhakimata
  • By rhakimata · New reply June 30, 2015
  • Discussion in Radiation therapy · 40 replies
  • Xeloda+temodar is not working any more for me, my doctor is suggesting that i go ahead with PRRT (which I had planned to get prior to x+t). But I am in panic, could anybody share your experiences with ...

UK research team gets $100K grant from Caring for Carcinoid Foundation

eltoro
  • By eltoro · Posted June 30, 2015
  • Journal · 0 replies
  • UK team receive $100K research grant from US for immunotherapy investigation: http://www.netpatientfoundation.org/2015 /06/uk-team-receive-100k-research-grant- from-us-for-immunotherapy-investigation ...

Another example of why you need to see a NET expert

eltoro
  • By eltoro · New reply June 30, 2015
  • Journal · 4 replies
  • http://www.fox5vegas.com/story/29071235/ fox5-family-member-dealing-with-rare-tum or#ixzz3duzOAjXO His surgeon tells him that "We don't have any alternatives after we remove it, and so if we can get to ...

Now tumor ablation as out patient but again not Stateside

teamcc
  • By teamcc · New reply June 29, 2015
  • Discussion in Surgery · 15 replies
  • Surgery has been the standard of care in selected cases with solid tumors. However, a majority of patients are unable to undergo surgical resection because of the tumor sites, advanced stages, or poor ...

Cap/Tem Cycles

MJP2009
  • By MJP2009 · New reply June 29, 2015
  • Discussion in Chemotherapy and targeted therapies · 17 replies
  • Hello everyone, saw my 1st PNET Specialist in Chicago at Northwestern. We agreed that a systemic approach is needed and we talked about 3 things. PRRT, Cap/Tem phase II study and Pazopanib w/ Octreotide ...

Pea Sized Lump from Lanreotide Injection painful and persisting for two wee

hezekiah
  • By hezekiah · New reply June 28, 2015
  • Discussion in Chemotherapy and targeted therapies · 7 replies
  • Is it normal that this lump in the buttocks at site of injection is still painful after two weeks? This is the first one, so we were wondering for those of you farther along in Lanreotide injections if ...

Pain meds

mhead325
  • By mhead325 · New reply June 28, 2015
  • Discussion in Living with PNET · 9 replies
  • This is my first post. I was diagnosed with PNET in Sept 2004. Had a Whipple and was cancer free until tumors showed up in liver about 4 yrs ago. Have been on Sandostatin injections for several years ...

Defer surgery

fmbellok
  • By fmbellok · New reply June 28, 2015
  • Discussion in Surgery · 18 replies · Photos
  • I have a non-functional neuroendocrine tumor on my pancreas. My CT scan shows that my tumor has not grown in the last six months. My surgeon, Dr. Jason Fleming, from MD Anderson, has recommended that ...

EUS and suspected pancreatic net primary

susie54
  • By susie54 · New reply June 27, 2015
  • Discussion in Living with PNET · 18 replies
  • I am 3 years post liver resection for NET found in liver and primary was not located. surgery was done at memorial Sloane kettering in NY. Pancreas is believed to be primary as result of bio-theranostics ...

Immunotherapy

JohnR19962
  • By JohnR19962 · New reply June 27, 2015
  • Discussion in Living with PNET · 7 replies · Photos
  • Has anyone heard anything about immunotherapy, they were supposed to start a clinical trial at Stanford this month, any news ...

Celiac Nerve Block or Neurolysis for Pain

MJP2009
  • By MJP2009 · Posted June 27, 2015
  • Discussion in Living with PNET · 0 replies
  • I recently had a Celiac Nerve Block performed to control nerve pain. It was performed by an Interventional Radiologist using anaesthetic and steroid. It resulted in a just a few days relief so we are ...

Sutent for neuroendocrine cancer

Colbiemax
  • By Colbiemax · New reply June 27, 2015
  • Discussion in Living with PNET · 19 replies
  • Has anyone taken Sutent after Affinitor gave them too many side effects ...

Gastroparesis

Mwcarr
  • By Mwcarr · Posted June 25, 2015
  • Discussion in Living with PNET · 0 replies
  • Husband was just diagnosed with gastroparesis which I assume is from his NETs. I didn't see anything about sandostatin or xgeva causing this. Supposed to be uncommon. Unfortunately we have uncommon things ...

Mets to brain

54pickup
  • By 54pickup · New reply June 24, 2015
  • Discussion in Living with PNET · 14 replies
  • Hello Has anyone with a pnet had it spread to the brain. I have had some vision problems and my local doc sent me for an MRI Of my brain to rule out cancer in my brain. No results yet. Thanks for your ...

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