Vipoma Neuroendocrine Cancer

I need some advice.  I had three VIPoma tumors in my pancreas which were removed a year and a half ago.  I just had a body scan and the cancer is back on the head of my pancreas.  This cancer is rather rare==1 in 10,000,000--so I am concerned about getting the right medical advice.  Does anyone know a world class endocrine oncologist?  Thanks.

 Still Kickin 

On 2/4/2008 stillkickin wrote:

I need some advice.  I had three VIPoma tumors in my pancreas which were removed a year and a half ago.  I just had a body scan and the cancer is back on the head of my pancreas.  This cancer is rather rare==1 in 10,000,000--so I am concerned about getting the right medical advice.  Does anyone know a world class endocrine oncologist?  Thanks.

 

 Still Kickin 

My mother was recently diagnosed with pancreatic cancer that they said is also very rare. They said that she actually has two different kinds of cancer cells, the neuroendocrin and the more agressive asner (not sure about that spelling). She is at MD Anderson seeing Dr. Evans and will begin radiation today. She is not a surgical candidate due to other health issues so we are hopeful that the radiation will at least shrink the tumor and keep it from pushing on her stomach. We are very pleased with Dr. Evans at this time and he was also the doctor that treated a dear friend of mine who had colangio carcinoma (cancer of the bial duct) and he is 100% cured of his cancer. I wish you the best!!

I was diagnosed in 2003 with neuro-endocrine cancer and am still being treated sucessfully at USC in Los Angeles.  My treatment included Sutent during the clinical phases and 12 chemotherapy sessions with Avastin, Oxilaplatin and Leucovorin.  Right now I am only having CT Scans every 4 months and once a month a Sandostatin shot.  I am doing fine. So if you are looking for a good oncology program try USC Norris Center.  Good Luck

Siegrun 

On 2/4/2008 stillkickin wrote:

I need some advice.  I had three VIPoma tumors in my pancreas which were removed a year and a half ago.  I just had a body scan and the cancer is back on the head of my pancreas.  This cancer is rather rare==1 in 10,000,000--so I am concerned about getting the right medical advice.  Does anyone know a world class endocrine oncologist?  Thanks.

 

 Still Kickin 

Hi! Kickin,

I also have a very rare type of neoendocrine  cancer. For what I read: We have one case in 20.000.000 people a year. I don't no how luck I am so luck for getting it. The name is Glucagonoma.

I had a surgery in 1999, when they took a golf ball size tumor from my pancreas. They never came up with one diagnostic. The Doctors. really do not have one ideia what this is.

 I was having Cts every 3 month and they didn't note that it have recurred. When I finaly got one diagnost, was December 2005. They said it was too late for a surgery, and not aceptabel in chemotherapy, fot it wouldin't respond to chemo.

I never gave up.(they put me on Sabdostatin, once a month). It took the symthomas away, but the tumors kept growing.

After running for many University's Hospitals in USA, (that turne-me down in treatment), I went to MD ANDERSON in Huston Texas. I found a Lady Doctor that had seen one of my cases bafore. So she recomend a chemo with a chance of 30% that the tumors would respond.

It is responding beautifuly. I am feeling blessed!

Good luck for you, and God bless you,

Maria

HI

I have been diagnosed with vipoma but no tumors have been found.

Are you still looking for a VIPoma Doctor

can you tell me the name of the Doctor that helped you at MD Anderson?

On 9/10/2008 MYRAK wrote:

can you tell me the name of the Doctor that helped you at MD Anderson?

 

Hi! The Doctor at MD Anderson that is treating me is: Alexandria Phan. Good luck! I hope you will find her. Maria