Kathryn’s Story: Her unfortunate experience with 5-FU Chemotherapy

We wanted to share a story from someone who submitted his wife’s unfortunate experience with 5-FU based chemotherapy. This is the first submission we’ve received and Ken was kind enough to let us share his story on our site. Sadly there are many stories like this out there. Approximately 1000 people die each year from 5-FU Toxicity yet testing for DPD Deficiency is still not required before patients receive chemotherapy.

Kath at Tent Rocks National Monument

I am enclosing a Letter to the Editor published in a local Gannet paper in Dec 2013. Thanks for advocating for this important cause. v/r, Ken

Contributing to the Body of Learning for the Care of Patients

“This treatment is fairly well tolerated…” That is what we heard about the 5-fluorouracil (5-FU) chemotherapy treatment prescribed to treat my wife Kathryn’s late stage colorectal cancer. Three different cancer centers assured us that she would suffer none of the debilitating side-effects often associated with chemotherapy. The 5-FU chemotherapy regimen has been used for decades to successfully treat colorectal, head and neck, stomach, and certain breast cancer patients. Yes, many people tolerate it well.

Turns out, not everyone does. Patients, such as Kathryn, with a genetic condition, a dihydropyrimidine dehydrogenase (DPD) deficiency, are unable to metabolize the 5-FU agent. The DPD enzyme is the single point of failure as it is essential to the metabolizing of the 5-FU to minimize the destruction of healthy cells. Without the enzyme, the 5-FU remains in a patient’s body creating a toxic reaction as the agent continues to destroy good cells at the same rate it attacks cancerous ones.

The reaction after just one round of the 5-FU may lead to a long hospital stay from a severe toxic reaction or even death. Within days of her one and only treatment, Kathryn developed a severe mouth infection. She ate and drank little and needed an IV for hydration within the first week. Her symptoms built up slowly but persistently until she collapsed and had to be rushed to the hospital on the 9th day after her treatment. There, in the emergency room, the on call physician from the cancer center concluded that she suffered from the DPD deficiency.

Despite the care administered to her, Kathryn’s condition deteriorated. She was not producing new white blood cells and was therefore at a high risk of infection. After one week in the hospital, another physician offered that her body suffered “a house fire” and that it would take time to rebuild. In Kathryn’s case, however, the fire was not out and it continued to smolder and burn. Her low white blood cell count, neutropenia, remained a concern but there were other complications. The silent killer was the deterioration of her mucous lining in her digestive and respiratory systems that zapped her strength and never allowed her to recover. Kathryn passed away after two weeks in the hospital.

It is sad that our community lost a wonderful person full of grace prematurely but what is more sad is that others could suffer a similar fate unless there is widespread adoption of genetic testing for this condition and changes in the monitoring of treatment of patients at risk.

The health care industry is doing many great things to advance the treatment of cancer. The Wall Street Journal recently reported advances in isolating different genetic conditions in tumors that allowed physicians to tailor treatment plans. The health care industry has an opportunity here to tailor a treatment plan by first assessing a patient’s ability to withstand the standard treatment protocol.

Pre-screening today is not routine nor is it advocated as a prerequisite for 5-FU treatment by the Federal Drug Administration, pharmaceutical companies, the American Cancer Society, or the health insurance industry. In most cases you cannot identify a person with the DPD deficiency simply by looking at them. Only in severe cases of the deficiency are symptoms evident and most people with this condition appear completely normal until they are treated with 5-FU. Our children have been tested, a simple blood test, and they know now that they should never receive a 5-FU treatment or they too would suffer a toxic reaction.

Perhaps the incidence of the deficiency is too low to command attention as estimates place it at affecting between only 2 — 8% of the population yet nearly 15% of patients treated with 5-FU suffer a severe toxic reaction to treatment and the number of deaths each year is estimated to range from 500-1000 in the US. While the probability of a toxic reaction may be low, the health care industry should have safeguards in place to minimize fatalities. Pre-screening of patients would appear to be a reasonable and low cost measure though it is not sufficient. Medical studies show that there is no single test that can identify every patient who may have a DPD deficiency though research continues to piece together this genetic puzzle. Pre-screening, when combined with tailored doses of 5-Fu and close monitoring of the abilities of patients to metabolize the chemo agent has been shown in medical reports to limit adverse drug reactions.

As she was preparing to start her treatment, Kathryn wrote “I am optimistic and very grateful to all who have traveled this path before me and contributed to the knowledge and experience of those whose vocation it is to heal people like me. May my experience also contribute to that body of learning.”

It is time to learn from Kathryn’s case and it is time for a change: care providers should offer, if not insist upon, pre-screening patients for the DPD deficiency before the start of 5-FU chemotherapy. Pre-screening is not fool proof, so care providers should also consider tailored dosage levels and monitor side effects to detect and quickly treat patients who show early signs of severe toxicity.

A friend of mine suggested that change may come slowly and in the form of one conversation at a time. I will continue my conversations.

I hope others join in the conversation and start advising friends and loved ones who are seeking treatment for colorectal, head and neck, stomach, and breast cancer to ask about DPD deficiency screening before their very first 5-FU treatment.

You may save their life and you may also join in the string of conversations that will change the way the health care industry copes with this condition and improves patient care.

– Ken Surprenant

Show your support for Kerrie's Family and help spread the word about DPD Deficiency. Buy a StrongMom shirt. All proceeds go directly to Kerrie's family.

6 Responses to “Kathryn’s Story: Her unfortunate experience with 5-FU Chemotherapy”

  1. Michael Magnuson June 23, 2015 at 1:24 am

    I am incredibly sorry about Kathryn and what happened because of the 5FU. I recently started 5FU and Leukovorian because of stage IIa colon cancer. Because of stories like this, I specifically asked my Oncologist to run the test. It turned out I was not DPD deficient and indeed had my first chemo session this morning with no problems so far. I was a little surprised that my surgeon or the oncologist never mentioned DPD testing until I asked for it. The blood draw folks at the cancer center never even heard of the test as it was listed on the paperwork. I’m not sure why there seems to be a reluctance or lack of incentive to test for this.

    Thanks for sharing this story. It didn’t matter for me in the end, but you very well could have saved someone’s life.


  2. Doris Griffiths October 1, 2015 at 11:18 pm

    Hi Mike
    My Husband recently passed away in very similar circumstances to Kathryn. He was so healthy and fit and it was the Chemo that killed him as afterwards they said he probably had DPD. Our oncologist offered no test, or even told us about DPD Enzyme Deficiency.
    There is so much confusion about testing for DPD, you mention you asked your oncologist for a test, can you tell me what the test is called and where you had it done. THIS TEST HAS TO BE REGOGNISED GLOBALLY TO SAVE LIVES IN THE FUTURE.



  3. I had colon cancer, stage 3c. I had 4 treatments with oxaliplatin. Side effects started immediately. After I could no longer tolerate that drug, I agreed to 5-FU/leukavorin (spelling?). In the weeks following, I had every side effect listed about this drug except death. I was very close to death by the time I arrived at the ER. I spent 18 days in the hospital. Enzyme testing found DPD deficiency. In Feb 2012, I suffered respiratory failure. My husband found me unresponsive. He called 9-11 and performed CPR. I arrived at the ER, DOA. For reasons only the Lord knows, I am still here.
    I suffered vision and hearing loss from that event.
    I firmly believe the toxicity of chemotherapy not only altered me 5 years ago, it is still wreaking havoc on my body/brain today.
    I too believe enzyme testing should be available to patients. I was never told about this particular risk. Our family history with pharmaceutical drugs would have been enough for me to have order testing.
    I am so sorry for the loss of your Kathryn. I hope you have been surrounded by loving family and friends during this time.
    I believe many things have improved in the treatment of cancer. There are many unknowns regarding the side effects of chemotherapy. There are many things oncologists know but have not shared with their patients. I did my own research about side effects of the drugs I was taking, but never knew anything about DPD.
    Thank you for speaking out.
    Many thanks for sharing Kathryn’s story.

  4. I apologize for not responding sooner to your comments. Doris, I am sorry for your loss. The test involved a blood draw and the lab looked for genetic indicators of DPD Deficiency. Kathryn\’s oncologist office took the sample and Quest labs performed the analysis. While this test can be useful, it will not identify all the \”at risk\” patients: there are more genetic mutations to discover and other factors may cause low DPD enzyme activity. Two hospitals in France are using a \”functional\” test that checks the enzyme level to allow for tailored dosing of 5FU; as a result, these institutions have reduced their rate of severe toxic reactions.

    Instead of asking if a patient has the genetic condition that leads to DPD Deficiency, we need health care providers to ask if a patient\’s enzymatic activity is sufficient to withstand treatment with 5FU. When we start asking the right questions, we can get to the right answers.

    Kathryn, I wish you well as you recover.


  5. The very same thing happened to my husband in 2011. He died 28 days after he took his first pill. Our Health Gouvernement in Québec has been informed, but the test is not yet offerd. Many doctors don’t even know what a DPD deficit is. You have been doing your part to inform people and so have I in Quebec.

    I know I will continue to do it until the test is offered.

    Colette Bibeau

  6. I live in the UK. I was screened. I am DPD deficient. I had stage 3a bowel cancer and was operated on last month. Chemo starts next week. I am very very anxious. But for the screening….. Who knows but I’d had a very very bad feeling about it and now I know why.

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