AN INTRODUCTION FROM PAUL
DPD deficiency foundation works towards raising awareness and find a cure from the sufferings of DPD deficient patients. The highly impacted patients suffer neuro-motor difficulties from childhood, and the less impacted, unfortunately face an untimely death when exposed to potent forms of Uracil such Effudex or fluorouracil.
It is time we worked hard with the pharmaceutical industry to find therapies that will put an end to the sufferings. It is time we worked hard to develop screening techniques, so that many can take the preventive measures. It is time we supported each other in addressing this cause.
Enzyme deficiency treatments disciplines are at cross roads. Many research organizations have made leaps and bounds in addressing it by creating new enzyme chaperon molecules, and reducing impact of various neuromotor disorders.
Cancer kills. Treatment is a ray of hope for people who identify the illness early on. That treatment option should not be taken away from them for the fear of DPD deficiency.
We are in the process of registering DPD Deficiency foundation as a 501-c charitable fund. A scientist to work on finding a cure costs approximately 100 thousand dollars. We need a few scientists to work on this well-deserved cause. Our immediate goal is to fund purification of DPD and recombinant enzymes and generation of animal models (mice and pig) so that purified forms of DPD and recombinant enzymes can be tested upon them. This opens up a path to eventual human testing and a cure.
While that research is in progress, it is important to let the community learn about this disease. It is important to generate awareness, understand risks and the potential of upside of getting tested. A simple thiamine level test in urine can serve as a forewarning and let us start by working towards thiamine testing a standard procedure before chemo therapy.
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Dihydropyrimidine Dehydrogenase (DPD) Deficiency and Fluorouracil (5-FU) Toxicity
If you have found this website, you have likely lost a loved one, experienced severe reaction to or are about to undergo treatment of some type using a Fluorouracil based drug.
I hope you you are here pretreatment and doing thorough research.
What you will find here is the most complete information detailing DPD Deficiency and the risks of using Fluorouracil without being tested for DPD Deficiency that I can find.
DPD Deficiency simply put: the lack of a critical enzyme needed to metabolize the drug 5-FU. Under normal conditions, 80+ percent of a dose of 5-fu is quickly metabolized. Low or severe deficiency leads to the drug not being metabolized from the body. The drug lingers in the system, continuing to kill cells and the results are painful, long lasting and can be fatal. Survivors report lifelong ailments as a result. Fluorouracil is a highly toxic drug even under “normal” circumstances.
According to 2005 Centers For Disease Control statistics, approximately one hundred, forty-one thousand people per year are diagnosed with colon cancer. Fifty-three thousand died as a result of colon cancer. 1
Several sources indicate DPD Deficiency affects from three to eight percent of the population.
Over 11 thousand new cancer patients can expect to have some degree of DPD deficiency. Unfortunately, this is not typically discovered until a cancer patient receives some form of 5-FU.
In its most severe from, the combination of the deficiency and 5-FU toxicity has a 33% mortality rate. Thirteen hundred people die annually from 5-FU toxicity. 1300 people...if those same people were dying in plane crashes, by crazed gunmen, etc, there would be a media outrage. Instead, these are people dying quietly in hospitals and their homes.
Genetic testing is readily available but not part of the standard of care. It may not be covered under insurance plans as part of treatment. The cost of testing is relatively inexpensive. If your treatment is going to include 5-FU based, DEMAND TO BE TESTED. Pass along this information and do everything you can to make testing a standard part of the use of this dangerous drug.
Cheryl Britton died very painfully and quickly from 5-FU toxicity after only her first preventive chemotherapy treatment for colorectal cancer. Fluorouracil, Eloxatin and Wellcovorin were the drugs she was treated with. Her first treatment was 18 December 2007. She lost her battle with the chemo drug on 3 January 2008. She was not tested. She had total DPD Deficiency.
Why is this site is here? Hopefully a patient, family member, doctor or friend will see it and avoid what our family was forced to endure. xx1