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Pancreatic Neuroendocrine with liver mets - Sutent

Posts: 17
Joined: Jul 2012

Would like to know if anyone has been treated with the drug "Sutent" for this type of cancer?
My husband has been battling this disease since Dec. 2007. He has gone thru Temador, Xeloda, Nexavar, Afinitor. Sir Spheres(twice), chemoembolization. Now the doctors are putting him on Sutent. If you have taken this drug for this type of cancer can you please let me know how you did and how were the side effects.

Posts: 1
Joined: Jul 2012

I was diagnosed in June 2011 with a neuroendocrine tumor in the pancreas, metastized to the liver. I was on a month;y shot of Sandostatin and had a radiation embolization done. Was doing good until February 2012. Cancer started to grow again and in April I started on Sutent. I have been feeling very good. Have lots of energy and do all my work nearly like normal. Side effects are tender sole of feet and some tenderness in my mouth. but all in all not bad. Also lost my taste, everything is blah and tast the same. I am on a holistic diet (no sugars, preservatives, meat or milk) lots of veggies and fruit and I have to eat every 3-4 hours. But I am doing well. Hope this will help you. I am taking 37 1/2 mg of sutent every day.

Posts: 17
Joined: Jul 2012

Thank you for letting me know. My husband has does his first round. He is very tired. Had a few mouth sores. But so far that has been it. Now we r dealing with him retaining fluid in his stomach, feet and ankles. I know this is not good. So I can only assume they will drain it. Thanks again

BeckyGma's picture
Posts: 5
Joined: Jun 2012

My husband has Zollinger-Elllison Syndrome (ZES), which caused six malignant gastrinomas around his pancreas in 2006-07. He's now going back for further testing, due to his symptoms have increased and the gadtrin levels are 12,067 (normal levels are 10-100).

Is this anything like what you two experience?

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