Pancreas Cancer Web


Hi - I'm Linda, and unfortunately the patient. I was 35 when diagnosed with an islet cell tumor of the pancreas in Sept. of 97. I turned yellow one day, with no other symptoms except dark urine, light stools and diarrhea. The only thing that I believe was somehow was related was a dizzy spell in June. I had a Whipple by Dr. John Chabot at Columbia Presbyterian (an EXCELLENT surgeon)and was told the prognosis was good due to: Type of tumor (non-functioning islet cell), clear margins, no lymph node involvement and containment. Chemo was not recommended as follow up treatment, but frequent monitoring was. I lost 15 lbs in one week (129 to 114) while in the hospital, but the recovery from the operation was not bad. In June, something the size of a pea was detected in the liver, and a follow up octreotide scan deemed it negative. More scans in three months were ordered just as a precaution, but the doctor seemed very confident it would be nothing because islet cell tumors are normally very slow growing. In September, more scans were done, and revealed the "Pea" was now three ping pong balls. Doubting the original diagnosis, I asked to be re-biopsied. Pathology came back as Neuro-endocrine carcinoma, probably islet cell. Samples of the tumor were sent to Oncotech by Dr. Robert Fine, also at CP, to rank the probably effectiveness of each chemo agent. I was put on 5FU, streptozocin, and doxorubicin; one week on and three weeks off. This was a trial to see what would work against it; once the tumors are removed, they would have no real way of knowing if it was working. It was a hell ride and I lost ten lbs. in a month from the diarrhea (from 118- 108) but the nausea was undercontrol with Zofran (?) and Kytril. I was told the tumors had started dying from the inside out, and I scheduled surgery for 1/12/99 to have 60% of my liver removed (it grows back!) Luckily I have a surgeon who was willing to take a chance on me. I had been turned down as a possible candidate for stereotactic radiosurgery, and the chief of surgery at Memorial Sloane Kettering in NY said I was inoperable. Sloane offered chemo embollization as a possible treatment; injecting spongy particles into one of the two blood supplies to the liver to starve the tumors. I opted against that one. Dr. Chabot, who had performed the Whipple in Sept. 97, successfully removed 60% of the liver, froze a tumor that was in the remaining part of the liver, and did an ultrasound to determine existence of internal masses. I was out of the hospital in 6 days. AFTER MY 10 DAY VACATION TO JAMAICA (!!) I will resume 2 - 4 more cycles of chemo and hopefully put this all behind me.

Posted 03/04/1999 11:15 pm by LINDA
E-mail Address:

Return to Main Message List

No replies on file.

*DISCLAIMER: This page is an unmoderated forum, and the opinions expressed herein do not necessarily reflect the viewpoint of The Johns Hopkins Medical Institutions. Patients are advised to consult their personal physicians before making any medical decisions.

Pancreas Home | Surgical | Medical | Basic Sci | Docs | Registry | FAQ | Appts | Chat

Feedback | Pathology Home | Oncology Center Home
Copyright © 2022 The Johns Hopkins University, Baltimore, Maryland
Last Modified: 11/11/2002 10:50 am