I wanted to express my sympathy to you for the loss of your mother. As my dad was about to begin Xeloda, I really took to heart what you had to say and thanked you so much for sharing. The result was that my dad's oncologist refused to the DPD test, saying that such deficiency was so rare and the test is expensive. However, my dad's primary doctor, bless his heart, did the test. Since then I have done more research and found Dr. Diasio at Mayos. He works a lot with the outcomes of this DPD deficiency which accounts for 43% of the high toxicity reactions to Xeloda (5FU). There are two other enzymes that can be deficient as well.
You dear daughter, there are so many things in the course of my dad's treatment that I didn't know only to learn later when it was too late. And this, even though I have been reading study after study after study since his diagnosis in early 2008. Following your strong and charitable and positive example, I am creating a list of those to hopefully share with others.
In close, thank you again. And I encourage you to contact Dr. Diasio to tell him your story and encourage his work to get the word out.
Best,
Ann E. in KC