5fu Toxic/deadly if You Have Dpd Enzyme Deficiency

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5fu Toxic/deadly if You Have Dpd Enzyme Deficiency

by Maryl on Thu Sep 08, 2005 12:00 AM

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was diagnosed with breast cancer and received my first dose of 5 FU on July 15th, 11 days later I was admitted to the hospital due to severe toxic reaction to the 5 FU, I was diagnosed with grade 4 (4 being the most severe level) - grade 4 leukopenia, thrombocytopemia, stomasitis, mucocitis, and diarrhea. I was in the hospital for 13-days, do not remember anything of the first week. My family was told I may not make it and supportive care was offered. Needless to say I did make it, however 4-weeks later I am still unable to what I had done prior to chemo due to fatigue. I was informed following this episode that it is very rare and they had never seen this type of reaction, and that I apparently had a deficiency in an enzyme called DPD which makes my body unable to metabolize the 5FU. Upon further research I found that approx. less than 5% of the population has this deficiency and those that do have had toxic reactions to 5FU, including death. I also found out there is a test for this enzyme, but was told by my oncologist it is not the standard of practice to test for DPD? I do highly recommed anyone who is about to recieve 5FU discuss with your physician the effects of DPD and 5FU, the odds are in your favor you will not have this deficiency since less than 5% of the population does, but I can assure you if you are in that 5% you do not want to have 5FU, I am truely very lucky to be alive today. I would be very interested in hearing from anyone who has had or knows someone who has had this reaction to 5FU.

5fu Deadly With Enzyme Deficiency

by Maryliz on Sun Sep 18, 2005 12:00 AM

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My aunt died after recieving 5FU chemo last year. Our family was told she had a genetic makeup that was deficient in an enzyme that helped metabolize the chemo. Now my mom has been diagnosed with colon cancer and of course we are worried about this drug. Anyone have any info that would help us? thanks

5fu Enzyme Deficiency

by Maryl on Wed Oct 19, 2005 12:00 AM

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Please do not allow your mother to receive 5FU until she is tested for the enzyme deficiency you grandmother had. I was told I was deficient in an enzyme call 5FU and I too almost died, my family was told I may not pull through this, I was hospitalized for 13-days,and do not remember the first week at all. I still have residual effects including memory loss both long term and short, gait issues, and fine motor skills problems, for which I attribute to my reaction. I have done alot of research on this enzyme there are many articles regarding the defiency. Do a search on 5 FU side effects or DPD and you will find tons of information. My cancer clinic has scheduled me for genetic counseling as a result of this. I have learned through my research that there are test for this enzyme but it is not the standard of practice. The enzyme is hereditary. My daughter is pregant and they are having her genetically tested as well. Please let me know how things go. I truely believe had it not been for my age 40 and an otherwise healthy person I too would have died also


by Allisonwaz on Tue Nov 29, 2005 12:00 AM

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I'm sorry to hear about your aunt and mother. My father passed away three years ago because he received 5fu in chemo treatment and was dpd deficient. Unfortuantely, we didn't find out until three months after his death that he had the deficiency. I was flown down to University of Alabama to be tested and now know I am also deficient. Since this is a genetic condition, I would suggest contacting the University of Alabama because they are the center for the dpd enzyme testing. I'm working on starting a website with more information about dpd enzyme deficiency that is easy to understand for people who are not in the medical field because most of the websites are difficult to understand. I'll try to post the url when it's up and running. Take care.

Death Due to 5fu

by Patti06 on Thu Apr 06, 2006 12:00 AM

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My family only recently found this website as we, too, are looking for more info about this toxic drug. About 6 months ago, my husband died after a 5 day dose of 5FU. He developed every possible side effect, went into the ICU one week after the dose, and died two weeks later. He had a Stage 2 tumor of the esophogus, was receiving this one dose of 5FU & Cisplatin with daily radiation. He was 49, had no other health problems, and was mentally and spiritually prepared to fight and beat his cancer. The seriousness of DPD deficiency seems to be ignored by doctors. I am tired of hearing, "Oh, it's only 1% of the population." When your loved one is part of that 1%, that is not comforting. There seems to be a test available and further research is being done. He has no siblings and fathered no children and his parents are deceased so we will not need any genetic testing for other family members of his. We, as families affected by this drug, must do everything we can to change the way this DPD deficiency is addressed. And, we should put faces with those satistics because are loved ones are not "numbers" they were real people, and our lives have been changed forever. Thanks for listening.

5fu Toxicity

by Stevem on Tue May 16, 2006 12:00 AM

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The DPD exzyme deficiency is a well documented genetic abnormality. Is anyone aware of a commercial lab that tests for the toxicity of 5FU prior to taking the drug?

Same Reaction

by Beckyf on Wed Jul 19, 2006 12:00 AM

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i had the same reaction to the topical chemo cream for my skin cancer. i was apprehensive about using the drug given all the side affects that the warning lable decribed including death. i talked to my doctor about it, even making a third appt to discuss my apprehensions due to these side affects. she assured me that these side affects were noted on the lable and was only for those who received this drug intraveinuously (sp?) and that i didn't have anything to worry about. i started using the cream 5 months later (was dragging my feet...scared). 2 days later i started having fever, nightmares, strange taste in my mouth and tightness in my throat. i had these symptoms within 1 to 1 1/2 hrs after applying the cream but it would subside approx 7 hrs later (1 had to reapply every 12 hrs each time getting these symptoms 1 to 1 1/2 hrs later). My sysmptom started including diarreah, throwing up, and sharp stomach pains. All happening 1 to 1 1/2 hrs after each application. finally after 8 days i contacted my doctor via emergency on call and told her what was happening. she told me i probably had a virus but i could stop the med until i saw her on monday. i told her i looked up my sympotms and it said that that it was life threatening possibly due to dpd. she said that was highly unlikely. i told her that just in january of this year that fda had changed the warning lable to include these symptoms on the cream since death had occurred via the cream. come monday she had changed her tune (guess she researched over the weekend) and wants me to use something different. i am still having symptoms and don't know when they will go away. help!

Dpd Enzyme Concerns

by Luckycrumpet on Wed Oct 18, 2006 12:00 AM

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My dad was using a 5FU topical and a week later had a stroke after being in great health. His liver is failing and cancer is all over him and he doesn't have much time or quality of life to live. He had other issues develop, stomach problems, diarhea, etc. My mom has to plead with these jerks to do anything-- does anyone have any genetic markers that would make someone more likely to have this than others? Allergies? Physical issues? ~The notion that doctors think that a 1-5% chance isn't worth testing for is laughable. I would like to take those quacks to the middle of the desert and take them to an oasis. . . there I will offer them 100 plates of scrumptious food and 100 bottomless drinks. Then I will tell them that I put a deadly poison in 1-5% of the plates and glasses and assure them that they are not likely to get a poisoned portion as the rate is so low. . .

Reaction to Cream

by Chigirl on Sat Oct 21, 2006 12:00 AM

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Hi, I hope you're still checking this web site. I had the same thing happen to me 2 weeks ago. After 3 days of using the cream I was so sick. Called my Dr. and was told the same thing. Maybe a virus, highly unusual that it was the cream. It started the same way within 2 hours of applying the cream I was so so sick. I had been doing both my arms. He said to wait a few days and then do one arm. I started again Fri.last night and within 2 hours was sick again. I have stopped again and am calling him first thing Mon. What ever happened to you, when did your symptoms go away? We had such similar reaction I'm so curious. Hope you see this and answer. Of all the symptoms I thought I'd have this wasn't one of them. Has anyone else had this reaction?

Still Reading

by Beckyf on Thu Nov 16, 2006 12:00 AM

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I have my email notify me when someone responds on this board. Yes I still have symptoms although they've changed somewhat. The worse being blurred vision and memory loss. It seems to be getting worse...not better. I went through laser (blue light) to remove the cancer. Very painful...had to get special authorization from United Healthcare because the only standard approved method is the cream. Since my doctor wrote them and indicated I had the deficiency and needed the alternate treatment they approved it. I live in Orlando and the only person I could find that did this type of treatment was in Jacksonville who happens to be a plastic sergeon not a derm. It's been 2 months..it looked good at first but I'll need to repeat. Thats the drawback with the laser. Even though it's extremely painful...it seems to be the only alternative to the drugs at this time. Good luck and keep me posted.
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