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Post-Op Update

Mizzbrenners
  • By Mizzbrenners · Posted 1:47 am
  • Discussion in Surgery · 0 replies
  • Well I have not posted for a while, but I am finally able to do a little bit more. I want to thank everyone for all of their prayers and well-wishes I received when I announced my surgery. I had my surgery ...

Results for Xeloda/Temodar CAP/TEM Combo

bmichalski
  • By bmichalski · New reply 12:33 am
  • Discussion in Chemotherapy and targeted therapies · 52 replies · Photos
  • For those of you who have tried the CAP/TEM combo and found it to be helpful with reducing the size of the tumors, how long did it take for the tumors to begin to shrink? After 3 cycles of the combo ...

Feeling overwhealmed

lkg5966
  • By lkg5966 · Posted yesterday at 10:19 pm
  • Discussion in Watchful waiting · 0 replies
  • I'm been fighting PNET since March of 2008 (or even longer). I am NOT seeing a NET specialist, although I love my doctor and am happy with the treatment I've gotten over the last 6 years including 3 major ...

Black Cumin Seed Oil - an alterntive approach

Bonnie63
  • By Bonnie63 · Posted yesterday at 8:38 pm
  • Discussion in Living with PNET · 0 replies
  • Hi all. Just wanted to pass on a little more information on an alternative approach to fighting cancer. Attached is an article you may be interested in regarding the affects of black cumin seed oil on ...

gastro, oncologist and nutritionist

marypricej
  • By marypricej · New reply yesterday at 8:38 pm
  • Journal · 4 replies
  • I have seen all of these doctors and I still have the same issue (diarrhea). I have increased the Creon and I am taking the Imodium. I am seeing solid sometimes. I go back to the Gastro doctor on 11/11/2014 ...

Nets in anus rectum

Irishjackie
  • By Irishjackie · New reply yesterday at 6:30 pm
  • Discussion in Watchful waiting · 7 replies
  • I am supposed to start a new chemo chemtem shortly, but with my last 2 chemos I found constipation a huge problem, once nearly killed me got so backed up, I have a big tumour down below and I know another ...

Advances: Genetics and Meds - interesting findings

johnnysmooth
  • By johnnysmooth · Posted yesterday at 1:21 pm
  • Discussion in Chemotherapy and targeted therapies · 0 replies
  • Found this article in the course of other research I was conducting. Not sure how exactly this may translate to pNET, but I was once on Afinitor (everolimus - a mTOR inhibitor), had a very good response ...

Prayers for all

rootdoc
  • By rootdoc · New reply yesterday at 12:08 pm
  • Discussion in Living with PNET · 2 replies · Photos
  • I am running the Myrtle Beach half marathon in the morning. I will be thinking and praying for many people while running the race, especially my father (long-term prostate and bladder cancer survivor ...

Curcumin fights cancer even better than Vitamin D

Bonnie63
  • By Bonnie63 · New reply yesterday at 12:08 pm
  • Discussion in Living with PNET · 2 replies
  • Attached is a Dr. Mercola article on Curcumin touted as being even better than Vitamin D in the battle against cancer. As with any article found on the internet, or provided in newsletters, there are ...

CANCER AND ROOT CANALS

rocky9962 (Inactive)
  • By rocky9962 (Inactive) · New reply yesterday at 11:56 am
  • Discussion in News and research · 22 replies
  • How many of us pnet patients have had root canals? PLEASE answer, this is important, it looks like root canals can cause cancer. google root canal cancer http://naturaldentistry.us/1224/can-root -canals-cause-breast-cancer ...

ENETS research hope for the future

nowt
  • By nowt · Posted yesterday at 10:54 am
  • Journal · 0 replies
  • Hi Just an information post from UK and an extract from one of support network site's in UK. We have lots of local meeting with guest speakers who work in the field. I have been trying to fight this disease ...

Antagonist binding

teamcc
  • By teamcc · New reply yesterday at 10:25 am
  • Discussion in Radiolabeled hormone therapy · 7 replies
  • I was re-surfing some sites and low and behold Dr. Baum has a power point with a antagonist image. Funny thing is that I have never heard of Bad Berka talking about this. The process for producing is ...

Help me find a good Oncologist for my husband

Sheeljan
  • By Sheeljan · New reply yesterday at 6:55 am
  • Discussion in Chemotherapy and targeted therapies · 34 replies
  • Hello Everyone, My husband and I live in Northern Virginia, and he was diagnosed with PNET on 2/11/2013 after an untreated Pulmonary Embolism and DVT sent him to the hospital. A full pelvic CT showed ...

No Airline Help

snorkels
  • By snorkels · New reply October 22, 2014
  • Discussion in Chemotherapy and targeted therapies · 3 replies
  • Hello, I've been busy getting ready to get my husband PRRT therapy in Europe (likely Uppsala, but may be Basel). It was surprising to learn that there doesn't seem to be any compassionate airfare opportunities ...

Death with dignity

teamcc
  • By teamcc · New reply October 21, 2014
  • Discussion in Living with PNET · 20 replies
  • I'm feeling good and traing hard as a triathlete....form the very start none of what my American doctors made sense. In pfact I identified my own illness after years of blood tests I simply did a few ...

Wait and See

pnetgrammy
  • By pnetgrammy · New reply October 21, 2014
  • Discussion in Watchful waiting · 3 replies
  • I just finished by first CT since returning from Vanderbilt and advised to stay off of chemo until tumors grow or I develop symptoms. Because my pancreatic net (1.6 centimeters) is extremely indolent ...

Update Eleven years surviving Pancreatic Neuroendocrine

nowt
  • By nowt · New reply October 21, 2014
  • Journal · 12 replies · Photos
  • Hi I have written on this site before the history of how I have survived Pancreatic Neuroendocrine Tumours eleven years so far, after an initial diagnosis in 2003 where I was advised to go to a hospice ...

Compassionate Use Matching Service/Social Network

MNMKONA
  • By MNMKONA · New reply October 21, 2014
  • Journal · 13 replies
  • "Why Innovative Drug Access Can't Wait" I have been moved lately (more so than usual) in reading many threads & posts from people expressing frustrations related to the long process of drug development ...

VIPoma?????

JMS65
  • By JMS65 · New reply October 20, 2014
  • Discussion in Living with PNET · 8 replies
  • Is there anyone in the forum who has VIPoma? I do. In June, 2013 I had a liver resection, distal pancreatectimy, and splenectomy. The tumor originated in the pancreas and matastasized to my liver. The ...

Uppsala

snorkels
  • By snorkels · New reply October 17, 2014
  • Discussion in Chemotherapy and targeted therapies · 27 replies
  • Has anyone gone to Uppsala for PRRT? We are contemplating this for my husband if we can swing the cost. Any feedback on travel, what to bring, surprises they encountered, etc.. Thanks so very much ...

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