Plus, there's no evidence of safety concerns linked to long-term use of the drug, researchers say
by rickbnsa on Tue Jan 27, 2009 12:00 AM
Hello again all,
We've exhausted our legal possibilities regarding my wife's death to 5-fu toxicity/dpd deficiency. Seems there are none as any testing isn't a standard of care. I'm sure others have hit the same wall. Even the offer of 100% settlement to the lawyers wasn't enough to get justice and set a precedence.
We recently started a web page dedicated exclusively to DPD Deficiency in an effort to gather as much information in one location. I hope this may better assist others facing the experience all of us had endured.
Its amateurish yet and no message board to post experiences. That'll come but being I'm a wrench and hammer guy, it may be a bit.
I would like to be able to post everyone's experience and the only way I can currently offer is to email to the contact email address. From there, I will post it unedited to the site minus any personal information if requested.
I wish to thank folks here for the start of the knowledge that our family found, it really was the only place with anything like it.
Also, thanks to Cancercompass and Kelly for permission to link this website.
May we continue to learn and educate.
by rickbnsa on Mon Feb 23, 2009 12:00 AM
DPD-Deficiency.com update: the forum is now up and working.
Please visit and post any personal DPD/5-fu stories you may have on the forum.
by Maryl on Sat Oct 10, 2009 12:00 AM
On 1/27/2009 rickbnsa wrote:Hello again all,We've exhausted our legal possibilities regarding my wife's death to 5-fu toxicity/dpd deficiency. Seems there are none as any testing isn't a standard of care. I'm sure others have hit the same wall. Even the offer of 100% settlement to the lawyers wasn't enough to get justice and set a precedence. We recently started a web page dedicated exclusively to DPD Deficiency in an effort to gather as much information in one location. I hope this may better assist others facing the experience all of us had endured.www.dpd-deficiency.com Its amateurish yet and no message board to post experiences. That'll come but being I'm a wrench and hammer guy, it may be a bit.I would like to be able to post everyone's experience and the only way I can currently offer is to email to the contact email address. From there, I will post it unedited to the site minus any personal information if requested.I wish to thank folks here for the start of the knowledge that our family found, it really was the only place with anything like it.Also, thanks to Cancercompass and Kelly for permission to link this website.May we continue to learn and educate.rickbnsa
I am maryl, I posted my message 9/8/05. My condolences go out to you and your family for your loss.
I have not been back to message board for almost 4- years. It has been over 4 years since I received my almost lethal dose of 5-fu.
I continue to suffer daily from what I am sure is residual effects of this medication. I wake up daily in pain, every joint in my body stiff, I feel as if I am an 80 year old women with severe arthritis, it takes me 30-minutes or so every morning for my joints to loosen up. If I sit too long at work, I have to use the table as support to stand, all locked up. My memory has never returned to what it was, I often find myself forgetting things, unable to answer the simplest questions “what is your zip code”, eventually I remember, however it is not without pause, and quite noticeable. My energy level is barely enough to get me through the work day, I am so fatigued, I come home each day and have to lay down after work, I am literally exhausted. My weekends are spent resting because I have no energy left. I am sixty pound heaver, and no matter how hard I try, I cannot have no energy.
Yesterday 10/9/09, I had a follow-up appointment with my Oncologist, and was told by her that I should be back to my old self at this time. As far as I know I am the only patient my Doctor has treated who suffered this type of reaction. How can she say how I should be. This comment is what prompted me to try and find more information of the long term effects of 5-fu toxicity due to DPD deficiency.
I am so grateful to be alive, but so saddened because although I am alive, I do not feel like I am living. I have a beautiful 31/2 year old grandson, who I would love to spend every weekend with, but I am limited due to my fatigue. I see the pain in my daughters’ eyes when she watches her 44 year old mother stand up after sitting, stiff as a board in pain.
After reading all the messages on the board, I was so pleased to see you started a web page. Please by all means post mine, or if you need me to post it let me know, my e-mail is
I don’t believe this is something that only happens to 1% of cancer patients. This is something that can be prevented by a simple test. At a minimum all patients should be given an option to get the test for DPD defieciency, even if they have to pay for it themselves, all patients should be provided with the information.
I just read my reply, and see my email is messed up, my address is:
God Bless you and your family
by cherlarchet on Mon Mar 29, 2010 09:04 PM
If you're still on this site, write back. My late wife had a deficiency of DPD. Didn't even know what it is, much less than how it reacts to 5-Fu, OR. . .that there's a test to find out if the treatment will be fatal. As you can tell, it didn't turn out as we hoped.
Write back, let me know what happened.
by cherlarchet on Tue Mar 30, 2010 08:26 PM
To rickbnsa, or those who will listen,
This NEEDS to change! My wife died as a result of the cancer treatment, not the cancer, the treatment.
Just the fact that laypeople have to stop living and suddenly go into a crash research mode is just wrong. We should be able to trust the "professionals". But, instead, we, the people coming to them for treatment and advise, are not told about dihydropyrimidine dehydrogenase, or a possible deficiency. Not to mention, a test, simple cheek swab, ( available from a lab called "genelex", go to genelex.com *) to determine if you might die from the treatment. Has anyone made any headway in changing the "accepted practice" of keeping patients in the dark?
* Kristine at genelex told me that their lab has only processed about 5 tests so far this year (as of 29 MAR 10). There are only 2 or 3 labs that do this test, so extrapolate from that how many tests are done annually in this country. I figure 60 at best. AND, almost all tests submitted were from patients, NOT physicians.
by Michelize on Tue Apr 06, 2010 09:51 PM
Rick, my condolences to you and your family. My heart really goes out to you and others that posted here. I lost my father (he was only 62) to AML and the horror of his treatment was unbearable. We watched him suffer the most horrendous pain until he simply perished after three months of chemo. He never even left the hospital where he was kept in isolation for the duration of his treatment.
We were shocked when my mother was diagnosed with colorectal cancer stage 4 - with a small 'spot' on her liver - earlier this year. 5-FU treatment was prescribed after the tumour (polyps) was removed.
She was to receive 6 treatments over a 6 month period. (Five days of chemo with three weeks rest in between.) I was very concerned about her undergoing the treatment, as I’ve grown to deeply distrust chemo as the only means to fight cancer, but her oncologist assured me that it was a very ‘easy’ and safe treatment. “There might be some diarrhoea, and her mouth might be a little sore, but that’s it.”
She said only the smallest percentage of people (3%) has a negative reaction, but that it was very rare. On my question re testing for compatibility she said it was not procedure as the test was outrageously expensive, only done in USA (we live in South Africa), and would take a long time before we would get the results.
On the fifth day of her first cycle mom felt extremely ill. Diarrhoea, nausea, no appetite, extremely painful sores in mouth and throat etc. After a few days of this and noticing that she couldn’t even swallow water, let alone any food, I rushed her to hospital.
Same thing -- some or other rare occurrence of an enzyme deficiency that caused the reaction. She was kept in isolation for two weeks while they struggled to get her out of the woods. She’s back home now - since yesterday - still diarrhoea though. We have no idea what will happen next!?
Any, absolutely ANY advice will be greatly appreciated!
Blessings to all
by Yaziza on Tue Apr 06, 2010 11:00 PM
My Dad also took the 5-fu, His doctor wouldn't test for the DPD deficiency and the nurse had never even heard of it. When he was looking like he was at deaths door all grey and sick I give him essiac tea to help clear some of it out of his system.
by Michelize on Tue Apr 06, 2010 11:36 PM
Thank you Yaziza! I am trying to convince her to try natural remedies. I will try everything you suggested.
by pinkie100 on Tue Jul 13, 2010 02:53 AM
On Sep 08, 2005 12:00 AM 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.
On Sep 08, 2005 12:00 AM Maryl wrote:
I know what she feels like! I have been so sick with toxicity from this drug! What is worse is that I only took it for a pre-cancer! I feel like I am barely alive somedays! Please email 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--
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