DPD Enzyme Deficiency

joannemci
joannemci Member Posts: 4 Member
in Liver Cancer #1

My husband passed away on December 12, 2018, due to treatment with Capecitabine with a previously undiagnosed DPD enzyme deficiency. He had been diagnosed with Bile Duct Cancer, Stage 1, had a successful Whipple surgery, was pronounced "Cancer Free" by his Radiation Oncologist, but was prescribed Capecitabine by his oncologist for remaining pre-cancerous cells.   He had a total of 9 days on the chemo and began to show early-onset symptoms of this toxicity on day 7 of his first round of chemo.  His oncologist, the ER staff and the hospital staff did not recognize that his severe symptoms were a result of the missing DPYD *2A Variant until 4 days after the window of reversal with Vistogard had passed.  He died an excruciating death and a preventable death.  Testing absolutely must be mandated by the FDA.  Symptoms of this deficiency, when testing is not yet done, need to be shared with the patient. And all associated medical personnel need to be aware so that there can be an early intervention with the antidote, Vistogard.  There is absolutely no reason now why anyone should die of this horrific combination of chemo and missing DPD enzymes.  It is unconsionable that in this day and age this is still the accepted "Standard of Care" in almost all US hospitals:  no discussion of the symptoms with the patient, no testing, no recognition of symptoms, once they manifest,  and no use of Vistogard in time to save a life.  Please spread the word!

Comments

  • mojogirl67
    mojogirl67 Member Posts: 306 Member
    #2
    I Am So Sorry...

    I share your frustration and anger. I lost my husband three years ago after he suffered thru 8 treatments with severe diarrhea and nausea. He had the deficiency as well and it was too late. He was 6'4  and 240lbs when he was diagnosed. He had a feeding tube and was 140lbs when he died. The chemo destroyed his body as it built up in his organs. I was diagnosed last year with the same exact cancer he had in the same organs..stage IV. I demanded the test upfront. The chemo nurses knew nothing about the DPD deficiency. There is absolutely NO excuse for someone not to be tested from the start. Wishing you peace and comfort with your loss...M

  • mojogirl67
    mojogirl67 Member Posts: 306 Member
    edited June 2019 #3
    Mistake on his weight

    I’m sorry.. my husband‘s starting weight was 225lbs not 240.. sorry for the typo 

  • joannemci
    joannemci Member Posts: 4 Member
    edited December 2019 #4
    mojogirl67 said:

    I Am So Sorry...

    I share your frustration and anger. I lost my husband three years ago after he suffered thru 8 treatments with severe diarrhea and nausea. He had the deficiency as well and it was too late. He was 6'4  and 240lbs when he was diagnosed. He had a feeding tube and was 140lbs when he died. The chemo destroyed his body as it built up in his organs. I was diagnosed last year with the same exact cancer he had in the same organs..stage IV. I demanded the test upfront. The chemo nurses knew nothing about the DPD deficiency. There is absolutely NO excuse for someone not to be tested from the start. Wishing you peace and comfort with your loss...M

    Capecitabine fatality due to undiagnosed DPD enzyme deficiency

    In response to MOJOGIRL67, I apologise for not replying to your response to my husband's story about undiagnosed DPD enzyme deficiency and Capecitabine.  I have only just read it for the first time.  I am so sorry to hear about your husband's death from the same preventable and horrific reaction as my husband to the chemo.  And the fact that you have been diagnosed with the same cancer is just unimaginable.  I hope and pray that your treatment will be completely successful.  Would you be willing to share more information with me about your husband's experience?  I have found a network of other family members whose loved ones died from a lack of DPD enzyme testing.  We are working toward spreading awareness and eventually changing the FDA requirements for upfront testing.    If you would like to share your husband's story, please go to this website and share it with Ken Surprenant.  I'm sure he will add it to his website.  The more names we have, the more effective our advocacy will be, especially if we eventually choose to file a class-action lawsuit against the FDA.  It was done in France, and now it's law to have upfront DPD testing.  Here is Ken's website:  https://www.know-the-risk-of-5fu-chemotherapy.com/

    In addition, there was recent publicity about a woman in NJ who died a horrific death from this, and the article includes links to other similar stories, including my husband's.  This is difficult reading, but we need to spread the word and get it out into the open:  https://www.msn.com/en-us/health/health-news/her-cancer-surgery-was-a-success-then-a-genetic-condition-let-a-chemo-drug-ravage-her-body/ar-AAJJvTR?ocid=spartandhp&fbclid=IwAR1ZjZHIR2uhDmUR78IRde16e8neThqn9YNueBgcrMv6aP3h6C2T2iE1vyQ

     https://www.msn.com/en-us/health/health-news/her-cancer-surgery-was-a-success-then-a-genetic-condition-let-a-chemo-drug-ravage-her-body/ar-AAJJvTR?ocid=spartandhp&fbclid=IwAR1ZjZHIR2uhDmUR78IRde16e8neThqn9YNueBgcrMv6aP3h6C2T2iE1vyQ

    If you do contact Ken through his website, please ask him for my contact information, as I'd like to talk with you further about your husband's story, e.g., did you ever consider litigation for Wrongful Death?

    I do hope to hear back from you and wish you all the best is your own recovery!!!

     

  • joannemci
    joannemci Member Posts: 4 Member
    edited September 2021 #5
    mojogirl7 - DPD ENZYME DEFICIENCY AND CAPECITABINE

    I just now came across your last reply on June 13, 2019 in our discussion about DPD enzyme deficiency and lack of testin.  First of all, I am so sorry that you were diagnosed with the same cancer as well.  This is unimaginable.  It is now 2 years later since we last communicated and I hope and pray that you are doing well.  Please send me an update to my email address <content removed by CSN>   I would love to hear from you.  And yes, I did file a lawsuit, but it's not going to trial until May of 2022.  It's a hard case to prove.  

    Looking forward to hearing back from you!

    Best, Joanne McIntyre

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