Baljinder Khuban, a resident of Strongsville, Ohio, was 35 when she was told she had non-curable cancer. She was diagnosed after seeking treatment for a painful lump underneath her right cheek that caused pain so severe that it robbed her of restful sleep.
“The pain was so bad,” she said. “Nothing was helping, and one night, I was trying to lie down. I couldn’t sleep all night. I called my husband at work and told him, ‘I don’t know what to do.’”
Khuban, now 49, consulted with an Ear, Nose and Throat (ENT) doctor at a medical center in Ohio and said the doctor referred her to pain management services. She went for a second opinion with a different ENT, who ultimately removed her submandibular gland, which is located underneath the jaw and produces saliva, and sent it for biopsy.
The biopsy revealed salivary gland cancer, a rare head and neck cancer that affects only about one in 100,000 people in the United States, according to the American Cancer Society.
“It’s like someone throws a huge weight on you,” Khuban said. “It was very hard.”
Khuban underwent surgery after the biopsy to ensure that all of her cancer was removed. Doctors then monitored her over the next three years. One of her doctors ordered a CT scan with the expectation that the frequency of monitoring visits would decrease. However, this CT scan revealed that her cancer had returned and had spread to her lungs and liver. Doctors told her that at that point, due to the nature of her cancer, no other surgeries were appropriate.
Khuban was running out of treatment options when several of her doctors in Ohio suggested that she try to get on a clinical trial at the Barbara Ann Karmanos Cancer Institute in Detroit, approximately three hours away from where she and her family live.
“I said, ‘Do I have a choice?’” she said. “I couldn’t say no because my kids were little.”
In January of 2011, Khuban traveled with her husband, Manjit, to Karmanos to meet with Ammar Sukari, M.D., the leader of the Head and Neck Multidisciplinary Team at Karmanos Cancer Institute and an associate professor in the Department of Oncology at Wayne State University School of Medicine.
She was treated on a Phase II clinical trial involving a new class of oral drugs called Vorinostat. Vorinostat was tested at Karmanos Cancer Institute in an early development Phase I clinical trial that used the drug on different solid tumors. Researchers noticed that this drug was effective in two patients with a rare type of cancer called adenoid cystic carcinoma (ACC).
ACC is a common subtype of rare salivary gland cancers. Luckily, Khuban’s salivary gland cancer sub-type was ACC, so doctors started her on the Vorinostat clinical trial designed specifically for ACC. Her cancer stopped growing and spreading, and she remained on this treatment for five years, from 2011 to 2016. She then stopped the treatment and continues to have no evidence of cancer progression.
“I had great doctors and the medication worked for me,” she said. “Dr. Sukari was very good. (My cancer) has been stable the last five to six years.”
Dr. Sukari said that Karmanos set the benchmark for head and neck cancer treatments and has approximately 35 clinical trials designed to treat different types of head and neck cancers.
“Karmanos has a very old tradition in treating head and neck cancers,” he said. “We have a second-to-none medical team specializing in treating these kinds of cancers and all the different ancillary teams needed to care for head and neck cancer patients. This team meets weekly to discuss all new patient cases and provides treatment plans tailored to every individual patient. We also discuss if a clinical trial is the most appropriate treatment for a particular patient.”
Khuban said that she still lives with some memory loss, muscle spasms and difficulty sleeping, but she is able to manage. She credits her family, particularly her husband and her mother, for helping her through her journey, surviving and thriving.
“Family support is very important,” she said. “When you have that, you have everything.”
She also said that she wouldn’t hesitate to recommend a clinical trial to anyone who has been diagnosed with cancer. “This decision (to participate in a clinical trial) was part of what saved my life,” she said.
“It really helped me, and it can help others,” she added. “If you have a chance to get onto a study, I would. There’s nothing to be afraid of. I’m living and I’m taking care of my family. I’m still here. That’s all that matters.”
Karmanos Cancer Institute conducts hundreds of clinical trials to treat a wide variety of cancers. Karmanos offers every eligible patient the opportunity to participate in a clinical trial, many of which pave the way for therapies to gain FDA approval. To learn more about Karmanos’ clinical trials, visit karmanos.org or call 1-800-KARMANOS.