5fu Toxic/deadly if You Have Dpd Enzyme Deficiency

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RE: 5fu Toxic/deadly if You Have Dpd Enzyme Deficiency

by pinkie100 on Thu Nov 11, 2010 05:02 AM

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I am still suffering reprocussions from this toxicity after receiving 1 dose in April. I have just been declared disabled by social security and rated as improvement not expected. The fatique was (is) horrid and I was nearly bedridden most of the time. I am now going through extensive physical therapy because my muscles broke down. My arthritis came on with a vengence. I am lucky to be alive as well but had to give up my job of 24 years. I am now basically handicapped. I had severe systemic toxicity to 5Fu cream chemo. Please feel free to contact me at marianneavery@msn.com

RE: 5fu Toxicity

by pinkie100 on Thu Nov 11, 2010 05:06 AM

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I am still alive but severly disabled due to the cream form of this. Please contact me at

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

RE: 5fu Toxic/deadly if You Have Dpd Enzyme Deficiency

by katkat1973 on Wed Nov 24, 2010 10:19 PM

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thanks for the info. i am not sure what treatments i am going to recive yet but if this is offered i am going to aked alot of questions

RE: 5fu Toxicity

by babajane on Tue Dec 14, 2010 03:55 AM

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My Mom died the day after Thanksgiving.  She had colon cancer and had just started chemo two weeks before.  She was fine for about a week then had major vomiting , diarrhea and was admitted to the hospital for rehydration.  She went in to MD Anderson Cancer Center on 11/17/2010 and died on 11/26/2010.  We were simply told that she had a rare enzyme that caused her system to shut down .  Little did we know that had the oncologist offered her a simple test for DPD that she would still be alive today!  DPD is heriditary and every patient that is considering 5FU should be told that a simple test is available that will tell them if they will suffer this toxic reaction.  We would have my Mom here today and would not have had to watch her suffer had the oncologists of MD Anderson Cancer Center in Orlando offered her this test.

RE: Still Reading

by carolwilson on Fri Jan 28, 2011 03:06 AM

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Hi My Name is Carol I am 49 years old . I used the Fu-5 cream on my chest for sun cancer too. 5 days later I thought I was going to die . I have been sick for 6 weeks with stomach and colitis that is not getting better. I still need to have the cancer spots removed from my chest can you tell me your doctors name in Jacksonville . I live in Knoxville TN.

Thansk Carol

carolwilson@cewadvertising.com is my direct email

RE: 5fu Toxicity

by LostMyLove on Sat Mar 12, 2011 06:33 PM

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I lost my fiancee on 03/07/2011 after her onocologist chose not to test her for the DPD deficiency.  This was her second round of chemo.  Even the doctor said that she was "out of the ordinary" in her response to the first round.  She had most every side effect that is possible to an extreme extent and he still didn't test her before giving her 5FU again.  It killed her 17 days later.  Seven of those days she was in ICU.  I was told that she was one of the 1% of the population that had this deficiency.  Doing some research on the web, that number is closer to 3-5%.  It seems that EVERYONE who gets 5FU should be tested.  My condolences to everyone who has lost someone, or been hurt by, these barbaric practices.  Bret.

RE: 5fu Toxicity

by DaveBartholomew on Fri Feb 24, 2012 08:17 AM

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Hi Bret.  I too am very upset, mad just doesn't describe the frustration.  It has been 25 months since I got a pump installed through tubes, through a porta-catheter.  4 days after starting 12-14-2009, I had a heart attack.  Pulled that damn thing off. Went to the hospital for 3 days, ($40,000) all thanks to the 5FU.  (today, med costs over $100K, I am near death, nice curly hair, handsom ... I suffered my first stoke at work as a security guard last evening).   I think that I am DPD deficient.  I have doctor reports.  What do I look for in the enzyme testing?  My doctors have not talked to me since I stop being able to pay, last year.   I have 3 daughters and I can relate to your loss.  Take care of yourself, find a way to renew better than before, for every thing and in every way she inspired your life.

Dave3

RE: 5fu Toxicity

by nelsonterry on Wed Jun 13, 2012 10:25 PM

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On Jul 06, 2008 12:00 AM JoJoMack wrote:

Hello all.  I am so glad I found this site.  My husband had been applying 5FU on his arms for topical skin cancer.  The first couple of treatments went as they should have.  The last 2 times the pain was immediately severe and vomiting began after the first 2-3 days.  At the time, we thought the vomiting was due to the fact that his oncologist switched him from the cream version to the lesser expensive ointment version.  The swelling and rash above his eyes was worse and psoriasis set in around the unaffected areas.  We found the cream again through a Canadian Pharmacy as Efudex is ridiculously expensive in the states. Gotta love this government.  He was on day 5 yesterday--has been violently ill for the last 24 hours.  Sleeping now.  He discontinued the cream last night.  I don't know if I should take him to the hospital immediately or wait to call Dr. tomorrow (it's Sunday).  In my already brief search this morning I have only found technical $*#! regarding DPD Deficiency and nothing about what the hell we should do to treat the damage that has already been done.  Or should I rephrase that to "the damage it is DOING as I write".  I cannot believe that it is not mandatory to have this test regardless of WHAT percentage of the population has it.  Had we known this in advance, we would've taken the test regardless of the cost.  I am angry.  I feel violated and cheated.  For those of you that have lost loved ones, I am so terribly sorry for your loss.  This never should have happened.  Never.  I thank you all for posting your stories.  Will keep updating as we go.  Blessed to Bless.  -Joanne

I used 5FU cream on my upper arms in Oct. 2009. I thought I had a virus at first, progressed to hives, all my joints swollen, lips, tongue, and esophagus, also had extreme muscle pain and weakness in my legs. Now 2 1/2 yrs. later I am still having muscle pain and weakness in my legs, overall indurance consistantly declines. I went from being a very healthy active woman to basically handicaped. I have had to quit my job, I have gone through physical therapy no improvement. I am on pain meds daily for the acheing in my legs. I realize this is permanent, and I am so amazed at how little the medical field knows about this. I have been under medical care since this occured.

RE: 5fu Toxic/deadly if You Have Dpd Enzyme Deficiency

by jdaniela on Wed Feb 13, 2013 06:04 PM

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On set 08, 2005 12:00 Maryl wrote:

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.

Hope this can help someone:

http://www.wellstattherapeutics.com/therapeutics/html/randd/

http://www.upstate.edu/poison/pdf/tox_newsletter/01_10toxnew

RE: 5fu Toxic/deadly if You Have Dpd Enzyme Deficiency

by jdaniela on Wed Feb 13, 2013 11:57 PM

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Hope this can help someone:

http://www.wellstattherapeutics.com/therapeutics/html/randd/

http://www.upstate.edu/poison/pdf/tox_newsletter/01_10toxnew

Forgot to write this is an "antidote" for 5-FU poisoning.

Sorry for all those who were affected before. Hope this won't happen again.

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