ask about your risk of VERY serious side effects before starting 5-FU Chemotherapy

If you have been diagnosed with stage III or IV colon, rectal, or anal cancer, chances are your doctors are discussing with you the need for chemotherapy.  The standard drug for treating these types of cancers is fluorouracil (popularly known as 5-FU).


Oncologists have used this drug for many years in treating gastrointestinal cancers, and in some cases for treating breast, head and neck cancers, and the perception is that this is "fairly well tolerated" by patients.


The truth is that not all patients tolerate this fairly well.  In fact a significant number of patients  (between 10% -- 40% of treated patients) suffer severe toxic reactions that lead to costly hospital stays and over 1,000 patients will die each year in the US.


The use of 5-FU relies on the patient's body to metabolize the drug quickly to prevent it from damaging healthy cells.  This metabolic process is critically dependent on an enzyme: dihydropyrimidine dehydrogenase (aka DPD).  When a patient's DPD activity is compromised, 5-FU destroys healthy cells and puts a person at grave risk.  DPD deficiency presents a single point of failure. 


There are tests available to determine if a person has DPD deficiency though there is controversy over which type of test to use and their efficacy (more on this elsewhere); there are also too many oncologists who even question the need for a test that affects so "few" people. 


You should insist on discussing with your oncologist ways to minimize your risk and to provide you a better outcome before you start chemotherapy.  


The goal of this site is to encourage patients suffering colon, rectal, or anal cancer to discuss personalized chemotherapy regimens with their oncologists before starting treatment.   You should not take at face value that the treatment is "fairly well tolerated".


Fluorouracil (also known as 5-FU or Xeloda) has been used for many years as a key chemotherapy agent in the treatment of patients with colon, rectal, anal cancers and is sometimes used to treat head/neck and breast cancer patients.  Oncologists consider this an effective and low risk means of destroying cancerous cells. 


However, medical journals in recent years point to a greater risk of toxic reactions that can lead to hospitalization and, in rare cases, to death.


The intent here is NOT to scare patients, facing cancer is frightening enough, nor to discourage patients from seeking professional medical care.  Instead, the intent is to increase awareness of the risk and to embolden patients and their families to have an educated discussion with their physicians about the risks associated with 5-FU chemotherapy. 


So the following information may prepare you to have a frank discussion with your care provider:


Kathryn received one round of FOLFOX (5-FU, leucovorin, and oxaliplatin) and passed away within 3 weeks (see Personal Stories).  Kathryn inspired many people in our community in many ways and here her inspiration takes form among these pages in the hope that it will achieve one of her last wishes:

"I am optimistic and very grateful to all who have traveled this path before me and contributed to the knowledge and experience of those whose vocation is to heal people like me.  May my experience also contribute to the body of learning."


This site is dedicated to honor her wish and to help others avoid the fate she suffered.

"May my experience contribute to the body of learning."

images of Before and after the treatment that  led to kathryn's death