On 7/5/2007
Momoffive wrote:
I was diagnosed in aug '99 w/ neuroendocrine tumor of the pancreas known as metastatic malignant insulinoma. The tumors can make insulin. I had chemo, surgery (got all the cancer in pancreas and liver)..recurrence in july 01, used supplements etc...tried thalidomide/temedor; in nov 03 had the Lutieum octreotate in Rotterdam netherlands, 4 treatments in one year. Successful shrinkage of tumors but 7 mos after the last therapy, cancer started growing so quickly, I had an embolization, then started on abraxane, carboplatinuim, avastin, shrinkage again, stabilization for 6 mos. then started a trial of RAD001 at MD Anderson inNOV 06 until may 07. off treatment but am being considered for the indium 111 in houston at excel. Anyone have any experience w/ that...the cost? was it covered by insurance? any damage to kidney or bone marrow evident?
anyone wanting more info on how I have survived for 8 yrs w/ my disease, email me....thanks. taj brown, tx
My wife has a large liver adenocarcenoma secondary to bile duct cancer.
With either the diag of biliary or unknown primary, there are little resources and trials available.
The doctors first diagnosed it as unknown, but with an initial CA19-9 of nearly 2700
Gemzar/Carboplatin worked for 4 months
Xeloda and Oxaliplatin, failed to work, we had some progression ann a jump in CA 19.
We are trying to use the G-FLIP protocol with Dr. Howard Bruckner, but have insurance problems leaving Mass.
I would like to keep my wife around for at least another 8 years, any ideas would be appreciated.
Thanks
Murray