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

Update: Kerrie passed away after suffering four years. See the Strong Mom site for the complete story: 

https://www.strongmom.org/about-strongmom/kerrie-prettitores-story/

Original post: Kerrie Prettitore, a 42-year-old mother of three, was diagnosed with colon cancer in February 2014 and subsequently had successful surgery to remove the tumor.  However, today she is fighting for her life after a single chemotherapy treatment.  

After recovering from surgery, Kerrie began a six month chemotherapy regimen in mid March 2014. She immediately became very ill and was admitted to Valley Hospital in Ridgewood, NJ on March 31st. Kerrie’s condition continued to worsen and became life threatening within two weeks.  A test performed after Kerrie’s admission revealed she has a condition known as DPD Deficiency (Dihydropyrimidine dehydrogenase deficiency) which prevents her body from breaking down one of the chemotherapy drugs she received, 5-FU (fluorouracil).

After receiving the DPD test results, Kerrie’s doctors essentially gave her no chance for survival because she is completely deficient in the main enzyme needed to break down the 5-FU chemo drug. They contended that the toxicity would ravage her body and her immune system, preventing her from fighting even minor infections.

At this point Kerrie’s condition deteriorated very quickly. After several days, she fell into a coma and was admitted to the ICU.  She suffered greatly from severe mucositis and pneumonia, and in mid-April, when her immune system was at it’s lowest, she was nearly killed by a minor infection.

After Kerrie’s DPD diagnosis, her husband Glenn identified an experimental drug named Uridine Triacetate. Although this drug is normally given to chemotherapy patients with accidental overdoses of 5-FU, Glenn worked feverishly to obtain it to try to save Kerrie.  After significant effort and a successful appeal to the Federal Drug Administration, Glenn received approval to give the drug to Kerrie, and we believe it helped save her life.  

It is unknown if Uridine Triacetate actually helped Kerrie, but shortly after receiving the drug, Kerrie’s immune system began to recover. The mucositis subsided and her vital signs gradually improved through the end of April but she remained in a coma and in the ICU.

Her overall appearance and vitals gradually improved in the subsequent weeks but she remained in a coma and was transferred to the Kessler Institute for Rehabilitation in West Orange, NJ in mid June. At Kessler, Kerrie immediately began receiving intensive therapy and treatment to help her emerge from the coma. In July she started waking, opening her eyes and sometimes even making eye contact with visitors. Sadly, also in July it was discovered through an MRI that Kerrie is suffering from neuroencephalopathy secondary to 5-FU (chemotherapy) Toxicity.

Never one to give up, through August Kerrie made gradual improvements. She was more alert, and was able to slightly increase her Coma Rating Scale (CRS) scores. By September, she was starting to say a word or two in response to questions asked by visitors and Kessler staff, although this was not consistent. 

Kerrie Today

Today Kerrie is continuing to work hard each and every day and we feel that she is beginning to “emerge”. She is more alert and exhibits visual tracking to the left, and less frequently from midline to the right. She has begun to verbalize and appears to recognize people, especially those whom she hasn’t seen in a while. She will look at them and raise both eyebrows, sometimes accompanied by a small smile. We, along with the medical professionals at Kessler, are now able to recognize more of Kerrie’s words such as “what”, “yes”, “no”, and “ok”, along with some full sentences clinicians hear occasionally. They believe this is intentional talking, but remains inconsistent. In fact, Kerrie recently responded “I love you, too” in response to Glenn’s “I love you”. Last week Kerrie was able to complete the last word of the song Happy Birthday, although this wasn’t consistent. Two days ago Kerrie gave Glenn a kiss as he placed his cheek on her lips. She responded by puckering her lips and giving a kiss back (with sound which we believe further shows intention). She does this consistently with Glenn and her 3 children.

Medically speaking, Kerrie has a trachea collar but it has been capped for about 2 months. She tolerates it very well and her oxygen level has been normal. She has a peg tube for nutrition and medications but is beginning to be fed applesauce and water by spoon during speech therapy sessions. We are told that she is tolerating this well. As of last week, Kessler removed her catheter and she is urinating on her own.

However, Kerrie continues to exhibit increased neurological tone (extreme stiffness throughout her body), most notably to her neck muscles and both calf muscles. Also, Kerrie does experience episodes of vomiting. The exact cause of this is unknown at this time.

The most tragic element of this story is that this never should have happened. Had Kerrie been tested for DPD deficiency prior to the start of her chemotherapy regimen, she would not have been given 5-FU and her life would not have been put at risk. From our research, patients with DPD Deficiency consistently have high levels of thiamine or uracil in their blood. This would have been the first indication that there was a potential risk and further blood tests before chemotherapy would have prevented this horrible tragedy.

Educate yourself on varying degrees of DPD Deficiency and it’s affect on the wide range of side effects when coupled with 5-FU (fluorouracil).

To learn more about Kerrie's case and to help her and her family,

visit www.StrongMom.org