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What You Don't Know, Can Kill You! 
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"5-FU" and "DPD"  deficiency don't mix

The purpose of this site is to provide cancer patients and our families with critical information most doctors won't.
 
     In early 2008, my wife, Cheryl Landis from Canton, GA, was having .  .  . difficulties. Our first visit was to our primary care physician. He thought it was hemorrhoids. After a treatment for this, and with no improvement, referred us to  a specialist, a proctologist in Woodstock, GA, ( Atlanta Gastroenterology Associates www.atlantagastro.com ) who also diagnosed hemorrhoids.  the "specialist" was wrong too. Cheryl had cancer. We wasted months with creams and suppositories. Finally, we found a Dr. that recognized it for what it was. This man was planning to surgically remove the cancer after chemotherapy reduced the size of the tumor. 
       Here's the problem.
     5-fluorouracil (5-FU) is a commonly used drug in the chemotheraphy treatment of many, many forms of cancer, among them, breast cancer.  
     According to studies, as many as 5% ("Clinical Cancer Research", August 1999, pg 1947-1949, Also, Dr. Robert B. Diasio, The Mayo Clinic, among others) (as high as 14% according to International Journal of Cancer, Sep, 2002, pg 253-258)  of the population has a serious deficiency in Dihydropyrimidine Dehydrogenase (DPD).  This enzyme is a critical metaboliser of  80-90% of the 5-FU dose (again, Clinical Cancer Research, Aug, 1999, pg 1947-1949). With this deficiency, the full dose of the 5-FU can be absorbed into the patient's body. This can be fatal. Cheryl, was not the first! Unfortunatly, she won't be the last. The oncologist that administered the drug to my wife, as well as most, if not all, other oncologists, know about this cause & effect relationship. But, often choose not to even inform the patient of the possiblity of a DPD deficiency or the possible related outcome (death). After 5-FU was administered to Cheryl, severe mouth sores, nausea, diarrhea, neutrophinia, low blood pressure (in spite of three different drugs to keep the pressure up), pneumonia, kidney failure and finally .  .  .  heart failure. Imagine this: after what was supposed to be routine treatments, my wife is indused to unconsciousness and put on a respirator. I have to call the kids & tell them.  .  .  ."get on a plane and come now!". And then, one Dr. calls me to the hallway outside the Intensive Care Unit, and asks me "when would you like her to pass away?" The Dr.s could try to keep Cheryl here for a time, but the eventual was inevitable. 
       After the drug was irretrivably in her system, "Georgia Cancer Specialists"  ( www.gacancer.com ), the group of Dr.s we were seeing for the treatments, ordered a test. 
      That's right, there is a TEST to determine if you are at risk. (See page two for lab names and their contact info.) The cost is presently around $300.00, but a supervisor at one lab that I spoke to tells me that the cost will come down as the number of tests ordered goes up. She also said that most of the teste were ordered by patients or their families, NOT by doctors. Doctors don't order most of the tests, patients have to research, find the facts then order the tests themselves.   
      Yes, as horrible as this sounds, I was not able to bring legal action against this practice. The information was given to an attorney who is also a surgeon. He was very surprised that something like this could be happening, and said that his firm would try to help stop this. But couldn't. The problem is that, basically, it's not "common pratice" to test for this deficiency (DPD) before giving the drug (5-FU). Even though the warning labels on the 5-FU recommend testing first. ( "Approximately ½ of highly toxic reactions to 5-FU in patients are due to DPD deficiency." qoute from Theraguide 5-fu label, "CONTRAINDICATIONS: XELODA is contraindicated in patients who have a known
hypersensitivity to 5-fluorouracil.", quote from Xeloda tablets label)
 Medical pratice policy is: if no one else does it first, no one has to start testing. So, it's up to us patients and family members to advocate for ourselves and each other.   
     The point is, before being given 5-FU,
          Get  Tested!       
                                        
You should also see:

(www.fu-fda.com)

(www.dpd-deficiency.com)
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