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DPD deficiency..another life lost

mojogirl67
Posts: 211
Joined: Oct 2018

I switched over to the liver forum yesterday and was saddened to read of a member's story about the loss of her husband due to DPD defiency. By the time it was discovered he had it, it was too late. My husband had it as well. He suffered severely and expereienced horrible side effects that destroyed him from the inside out. The chemo is bad enough but this is ten times worse.

 

++DPD is also needed to break down the chemotherapy drugs 5-FU (fluorouracil) and capecitabine. Without the DPD enzyme in your body, undergoing 5-FU based chemotherapy can be a serious risk. Roughly 4-8% of the population has some form of DPD Deficiency, ranging from partial deficiency to complete lack of the enzyme in their system.At the moment, people treated with 5-FU (fluorouracil) or capecitabine do not have routine testing for DPD Deficiency before their treatment. Up to 30% of cancer patients receiving 5-FU experience severe toxicity (grades 3 and 4).f you are to receive 5-FU (fluorouracil) or capecitabine as part of your chemotherapy treatment you should insist your doctor arrange a test PRIOR to beginning treatment. Hopefully you are not are reading this after having severe side effects from your treatment.

The sad thing is that a simple test done for every patient before initiating chemo could prevent suffering and death. Why this is not part of every patients's workup before treatment makes NO sense. Most patients and caregivers don't know anything about this. I didn't until I happened I to read about it on another cancer board. It wasn't offered to me and my chemo nurses knew nothing about it which is absolutely crazy. I had to request the test for myself before treatment. It makes me furious that people are dying from this who could otherwise stand a chance to beat their cancer diagnosis. Please, please, help spread the word on this as much as you can. Maybe if we all scream loud enough, someone will hear us and this will become a standard test before treatment and we can spare others needless suffering and death. 

SandiaBuddy's picture
SandiaBuddy
Posts: 769
Joined: Apr 2017

My onclologist mumbled something about my enymes being why I did not tolerate chemo well, but he never tested for DPD--at least as far as I know.  This is very valuable information.  It makes sense to test for it before chemo.

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