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Throat Cancer Survivors Clinical Trial for DIPG Offers Hope
Don’t Have to Sacrifice Ability for Children with Brain Cancer
to Swallow and Taste Brain cancer is the second most common cancer among
children after leukemia. But while new therapies have sig-
Tamarac resident Kenneth nificantly increased the cure rate of pediatric leukemia,
Goff was home shaving morning effective treatment for brain cancer still lags.
when he felt a small lump on the I am currently conducting a pioneer phase I clinical trial
left side of his neck. called ONC201 at the Miami Cancer Institute (MCI) test-
“There was no pain, no noth- ing a new targeted therapy for brain tumors. I am hopeful
ing, but I could feel it by the that this new drug will become the go-to treatment for
way the razor moved,” said the cancers such as diffuse intrinsic pontine glioma (DIPG), a
58-year-old father of five and cancer that currently has no long-term survival rate. This
grandfather of eight. “It wasn’t is one of the hundreds of clinical trials for cancer in which
visible at all, but I could feel it we’ve enrolled patients for the past three decades.
right below the jaw line.” I joined the Children’s Oncology Group (COG) in 1996 BY DOURED
After a CT scan at Broward to find cures for pediatric cancer working with experts DAGHISTANI, MD
Health Medical Center in Dr. Ryan H. Sobel Kenneth Goff worldwide. The COG is supported by the National Cancer
August 2020, Goff was diag- Institute and COG researchers have been instrumental in numerous advances.
nosed with HPV-mediated squa- Through COG’s multiple clinical trials, acute lymphocytic leukemia (ALL) in children
mous cell carcinoma, a type of prepared me very well and told me in saw an increase in survivorship from 60 to 90 percent. Only 50 years ago, a diagnosis of
throat cancer. This cancer is similar to advance what to expect so I could pre- ALL was a death sentence. The next target is to get the same results – or better – for brain
what actors Michael Douglas and Stanley pare myself mentally and physically,” cancer, DIPG and other pediatric cancers.
Tucci have battled. The treatment of Goff said. “He said my taste buds would
HPV-related oropharyngeal squamous change during radiation and advised me DIPG – Uniquely Difficult to Treat
cell carcinoma may include surgery, radi- to gain 20 pounds before starting treat- In children with DIPG, the average survival is six months to 18 months after diagnosis.
ation, chemotherapy or combination of ment.” DIPG cannot be treated with surgery because the tumor is located where breathing and
the treatments. The radiation treatment temporarily heart function are controlled. Removing the tumor would cause catastrophic injury to
Ryan H. Sobel, M.D., a head and neck affected Goff’s saliva gland. He lost his these vital centers.
surgical oncologist at Broward Health sense of taste and suffered from severe The Miami Cancer Institute, where I serve as Medical Director of Pediatric Oncology,
Medical Center, prescribed radiation to dry mouth. He’s now 90% back to normal is one of five centers in the U.S. doing a trial with ONC201, a new generation of
treat Goff’s isolated neck mass. Prior to thanks to Dr. Sobel’s revolutionary proce- chemotherapy called “targeted therapy”.
radiation treatment, Dr. Sobel performed dure. We know our children are tolerating this new drug very well but it is too early to have
a submandibular, or saliva gland transfer, Goff was able to continue working as any conclusion on the impact of the drug on survival. At some point, we may be able to
an intricate surgery only a handful sur- probation officer during his treatments. combine ONC201 with chemotherapy or immunotherapy for a more robust response.
geons across the country are skilled at “Everyone thought I was crazy coming to While the children are monitored regularly in my office at MCI, the medication is
performing. He is currently the only sur- work during radiation,” he said. “I didn’t given once a week by pill or via compounded liquid for younger children. The first dose
geon utilizing this technique in Broward want to sit home. We have a great crew of is given under our supervision at MCI, after which the children return once every three
and Palm Beach counties. people I work with who are very helpful weeks for assessment. There are currently 12 children participating in the trial, ranging
Dr. Sobel strategically relocated one of and very supportive.” in age from 5 years old to adolescents.
Goff’s saliva glands. It was moved about Goff’s last treatment was December All of the Institute’s pediatric patients are under my care, including the majority of
three inches from the right side of his 2020, and now that his taste buds are those receiving proton therapy. We regularly attract children from throughout Florida
throat to under the chin to place it out of fully back to normal, he’s happy to be and other countries looking for our expertise in diagnosing and treating cancers like
direct range of the damaging effects of cooking up his signature dish for his fam- leukemia, brain tumors, kidney cancer and bone tumors, among others.
radiation. ily. “My specialty is pork and beans and
Patients diagnosed with throat cancer hotdogs,” he said. “We barbeque a lot.” Regional Collaboration Offers Children More Opportunities
face a difficult choice: treat the cancer Grateful to the physicians at Broward One of our goals is to expand COG treatment opportunities to patients of the other
with radiation and risk losing their abili- Health Medical Center for treating his KIDZ Medical Services hematology/oncology offices at Nicklaus Children’s Hospital,
ty to swallow and taste, or don’t treat the cancer in its early stages, Goff now advo- Palm Beach Children’s Hospital at St. Mary’s Medical Center, West Boca Medical
cancer and risk terminal illness. cates for being proactive about taking Center in Boca Raton and Naples Community Hospital.
“By safely moving saliva glands away care of one’s health. The dedicated KIDZ Medical Services hematology/oncology researchers, physi-
from direct radiation, we are able to help “We need to take care of our bodies cians, and other healthcare staff have, for decades, been involved in ground-breaking
mitigate long-term risks such as the abil- and pay attention to it,” he said. “I’m that research to improve cancer survival by offering patients the most advanced treat-
ity to taste and swallow and significantly kind of guy that when something doesn’t ments, such as with proton beam therapy, and opportunities to participate in clinical
preserve a patient’s quality of life,” said feel right, I run to the doctor,” Goff said. trials.
Dr. Sobel. “Some people, when they feel a little Keys to the medical advancements are multispecialty collaboration, medical expert-
For Goff, his radiation treatments lump, don’t do anything. When our bod- ise, participation in the Children’s Oncology Group research and a deeply-rooted
began with Evan Landau, M.D., a radia- ies our trying to tell us something, we commitment – some might say calling - to increase survivability for pediatric cancer
tion oncologist at Broward Health. “He need to listen.” patients.
Dr. Daghistani summed it up succinctly. “Research is the engine of everything and
as long as we have hope in our heart and work hard on doing research and supporting
research, we will beat cancer one day.”
Dr. Doured Daghistani is Medical Director
of Pediatric Oncology at Miami Cancer Institute.
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8 March 2022 southfloridahospitalnews.com South Florida Hospital News