THE JOHNS HOPKINS MEDICAL INSTITUTIONS
Pancreas Cancer Web


CAROL (TEXAS)


Photo of Carol Photo of Carol I am 55 years old, the mother of two children (my son in law school at UCLA, my daughter a gymnast and math major at the University of North Carolina (Go Heels!). I started having symptoms in May, 2004 -- while in New Jersey for my son's graduation from Princeton. Though I probably had symptoms earlier -- I had lost quite a bit of weight over the last year, thought I was just being good! It took four months to get a diagnosis, running through diverticulitis (not!), gall bladder problems (not!), and an ulcer (I actually had one of those.) The tumor turned out to be on the tail of my pancreas, and by the time I was diagnosed in September '04 I had substantial liver mets. So no whipple for me.

I went on the GTX regimen one day after the biopsy of my liver mets came back, with amazing success. Over 8 months, my CA 19-9 dropped from 50,000 to 93. During that time, the original tumor on my pancreas disappeared, and my liver mets went from large and numerous to only a very few, and tiny. Then, in May '05, my marker started to creep up (though the ct-scan was still good.) We concluded GTX had run it's course, and we tried Avastin and Tarceva. That did not seem to be working, so we added Gemzar. That also didn't have any effect on my rising numbers. For 3 months I went on Cisplatin and Taxotere. My first marker reading on this regimen was a large increase, but the second showed a slowing of growth, though still growth. I also was taking 8 grams a day (a lot!) of Curcumin -- this is being tested at MD Anderson, and I decided to just do it on my own. Unfortunatley, the Curcumin proved to have some miserable side effects, so I stopped that. At one point, when my tumor had clearly come back on the tail of my pancreas, I also did some "Novalis Shaped Beam Surgery", a very targeted and mild form of radiation. I have done a round of Oxaliplatin and Xeloda, but the side effects made me realize I needed a break from chemo. So I entered a trial for a new targeted drug (ARQ 501).

I took the required month off of all chemo to get ready for the trial, then gave life as a lab rat a try. After 8 weeks in the trial, it was clear my tumors were not listening to the message this targeted drug was sending -- mets had grown, my marker was way up. Interesting.y, a PET-scan done near the end of this trial showed absolutely no active tumor on my pancreas, just four liver mets and two small lymph nodes. I guess the combination of 8 months on GTX plus the Novalis radiation really blasted the pancreatic tumor out of there. I am now back to Oxaliplatin and Xeloda, with renewed energy and desire to beat this thing back. Having just had three months off of real chemo, I think my body is ready for the test.

The lesson from all this: You have to keep moving, never give up hope. I have supplemented my doctor's regimen with my own program of yoga and bike riding (up to 37 miles!) plus some meditation and visualization. I think staying active has been a real key to the success I have had so far. My plan is to stay on top of this thing with various combination therapies until something is available that will stop it in its tracks. Maybe I'm crazy, but I plan on being around to see my kids graduate, get married, have children, and enjoy retirement with my husband.

(Updated May 2006)


Posted 03/05/2005 10:19 am by Carol (Texas)
E-mail Address: cpanc04@verizon.net

Return to Main Message List
Responses

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.
FULL DISCLAIMER


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

Feedback | Pathology Home | Oncology Center Home
Copyright © 2020 The Johns Hopkins University, Baltimore, Maryland
Last Modified: 11/11/2002 10:50 am