ask about your risk of VERY serious side effects before starting 5-FU Chemotherapy

Susan's Story

My mother Susan was diagnosed with Stage 3 colon cancer in September 2019, and the
following month underwent a very successful surgery to remove a sizable tumor in the colon
along with a group of compromised blood vessels and a number of questionable lymph nodes.

In the weeks after surgery her oncologist strongly recommended a three-month course of
chemotherapy with FOLFOX, stating that he predicted she would tolerate the treatment
reasonably well, and could expect some of the typical and common side effects of
chemotherapy. He drove home an assuring message as he pronounced that to fail to urge the
chemotherapy treatment would be tantamount to malpractice on his part. After much thoughtful discussion with my brother, my sister, and myself, Mom led with her instinct to trust her physician’s wisdom and experience and she began the chemotherapy protocol, receiving her first - and only - infusion of 5-FU on December 4th, 2019. She died, head-spinningly, just 17 days later as a direct result of the chemotherapy “treatment”. We would only piece together the course of events after her terrible - and completely preventable - death.

For the nearly 20 years of her retirement - and before her cancer diagnosis at age 80 - Susan
lived a “snowbird’s” vibrant and charmed life. She spent the east coast’s frigid winters in sunny south Florida, playing golf and bridge with good friends, attending the theater and gardening. She lived very independently in a beautiful home and was continuously visited by family, including her children and grandchildren. She traveled north to New Hampshire for the summer and early fall months, back to a rustic cottage owned originally by her grandfather, where a dear community of long-time friends and cousins gathered. She reveled in these simple joys and her sense of freedom was marked with profound gratitude. She was a conscientious and thoughtful caretaker of the whole of her life, including her health. She kept up with every recommendation from her physicians as she aged. She was cautious and smart and proactive. The cancer diagnosis came as something of a shock - as it does to anyone - but she accepted it’s simple reality as a sensible 80-year old might be expected to do.

Susan began 5-FU treatment on Wednesday, December 4th, 2019. She received an hours-long
infusion at a local outpatient center and went home with a pump which fed the chemotherapy
chemicals into her body for another two days. Immediately upon cessation of the first (it would be the only…) treatment, troubling side effects emerged. Her tongue and mouth became tender and sore, diarrhea started, her appetite receded. Over the weekend she marshalled a positive attitude, believing she would turn the corner and the side effects would diminish and she would regain an acceptable level of comfort. But everything compounded and grew worse. Sores opened up all through her mouth, so painful she had trouble eating, speaking, or even swallowing. The diarrhea was urgent and chronic, the fatigue overwhelming. After several frustrating days of seemingly lost messages and failed attempts to reach her oncologist’s office, she was finally able to receive an assessment and some care on Wednesday, December 11th, one week after the launch of the 5-FU treatment. The concerned nursing staff administered badly-needed fluids and insisted she return the following day to see the doctor himself; they then sent her home with mouthwash for a (non-existent) thrush infection. In that appointment just 24 hours later, her oncologist voiced his concern that she was, in fact, tolerating the 5-FU very poorly. That he suspected she might “lack an enzyme” that would allow her to metabolize the 5-FU properly. He administered a test for DPD (a genetic condition known as dihydropyrimidine dehydrogenase deficiency) and told her that she was no longer a “candidate” for chemotherapy going forward. At that news,           Susan was honestly relieved. The treatment nightmare of the last week would subside and would not be re-entered in 2 weeks time as originally planned. She did not understand - was not told - that if her physician’s suspicions were correct, and she did indeed have DPD, that the outcome would very likely be fatal.

After the Thursday appointment with her oncologist, Susan spent another weekend suffering
horribly at home, waiting for her symptoms to abate. In fact, they continued to worsen and by
Sunday included a fever which sent her to the local emergency room (the urgency of the
situation meant she did not have the time it would take to reach the Cleveland Clinic facility
where her treating oncologist practiced). She presented with dehydration, mucositis, and
neutropenia, and was admitted immediately. Staff under the oversight of a second, new
oncologist, worked to bring symptoms under control and provide her with some relief; she
received an IV for fluids and Neupogen in an effort to boost her white blood cell count. The hope was to bring her own failing immune system back online to battle the increasing number of alarming symptoms Susan was experiencing. The mucositis required that Susan continuously suction mucus from her mouth, as she was unable any longer to swallow. She struggled to keep her eyes open - they were very light-sensitive and painful (likely due to corneal abrasion, a result of the 5-FU toxicity), and took to keeping a cool, damp cloth over her eyes in order to find a measure of comfort. The diarrhea worsened, the output only black liquid, to the point she required a bedpan, a terrible humiliation for her. She received only liquid nutrition as she had been unable to swallow solid foods for over a week. As we struggled to understand what was happening, staff stated blandly, “this is just
what you see with chemotherapy”. With the passage of several frightening days, her immune
system did not rebound and she was administered IV morphine for what was surely tremendous pain as the 5-FU ravaged her entire body, slowly poisoning her to death.
After 5 days in the hospital - and 1 week since her oncologist had administered the test for DPD - we learned the results of that test. That she was indeed positive for DPD. It was too late, then, for Vistogard intervention. She died two days later, Saturday December 21, 2019.

In the hours and days that followed her death, my siblings and I scoured the internet for every
available insight into what had happened to our mother. We dialogued with both of the
oncologists who had treated her and learned that they each had previously experienced a
DPD-related patient fatality in the course of their career. It was only after her death - and never
during the brief time she was being treated - that we understood that her chemotherapy protocol risked fatality. And that that very fatality was preventable through easily accessible knowledge: through testing for DPD.

Had Susan’s oncologist recommended DPD testing in advance of starting chemotherapy, her
story would be utterly different. In fact, she would be here herself to tell it. She would be here to tell the story of how she survived surgery for colon cancer at age 80. Of how lucky she was.
Even ineligible as she was to undergo chemotherapy treatment, she survived cancer. She
would say that no one knows what the future holds, that the cancer could return. But - for now - she was grateful for her life and the time she had left.

As my brother and sister and I grapple with our mother’s death, and strive to honor her life, we
are speaking out about the very important considerations that should be made (by both patients and physicians) surrounding chemotherapy treatment with fluorouracil and capecitabine. Pre-screening testing for DPD is of the utmost importance; it can be absolutely life-saving.