Gregory Francis is fighting an aggressive form of brain cancer, but his healthy complexion and high energy level make it impossible to detect that he is dealing with a life-threatening disease.
Francis, 41, is a new kind of cancer patient. His doctors have signed him up to be part of a sweeping new clinical study in Maine that attacks cancer in a different way from the traditional and often debilitating regimen of chemotherapy and radiation treatment.
He takes one 40-milligram pill daily that aims to keep his glioblastoma in check. The medication is afatinib, a genomic drug his doctors prescribed after genetic mapping of his tumor pointed to its potential as a medication that could arrest the tumor’s growth. Currently, Francis’ tumor is pea-sized, and Maine Medical Center doctors are keeping a close eye on it to see whether it stays the same, grows or shrinks.
“I’ve been feeling really good, better than I was. It’s been pretty much painless,” Francis said, a sharp contrast to the frequent vomiting, fatigue and weakness he experienced when he underwent radiation and chemotherapy last year, after he nearly died from seizures.
When the study is fully implemented, 1,800 Maine cancer patients will be participating, thanks to a $16.8 million investment, half from a Harold Alfond Foundation donation and the other half from The Jackson Laboratory in Bar Harbor. About 700 patients are now enrolled in the study.
Jackson Laboratory’s Maine Cancer Genomics Initiative is taking the lead on the project, working with all the major hospital systems in Maine. The initiative started in 2017 and is expected to continue for several years. About 9,000 Mainers are diagnosed with cancer every year, according to Jackson Lab.
And while the Maine patients are part of a clinical study that is in some ways experimental, genomics is gaining a stronger foothold in cancer care nationwide for its targeted treatment that attacks cancer cells’ DNA.
Dr. Priscilla Brastianos, who leads the Brastianos Laboratory at Massachusetts General Hospital in Boston, which studies the “genomic drivers of human brain tumors” said genomic research has an impressive track record and is showing great promise for the future.
“In the past 10 to 15 years, our understandings of the molecular underpinnings of cancer have dramatically improved,” said Brastianos, who is not affiliated with Jackson Laboratory but called the investment in Maine “amazing” and on a large enough scale that it will “move the needle” on cancer care in Maine. She said the improved scientific knowledge of cancer cells paired with the targeted therapy is producing “beautiful results in many different types of cancers.”
Nationally, the federal National Institutes of Health launched the Precision Medicine Initiative involving 1 million patients in 2015, and devoted $70 million to the National Cancer Institute to “lead efforts in cancer genomics,” according to the NIH website.
HOW IT WORKS
The key to using genomics in cancer treatment, experts say, is to map the DNA of the tumor and match the genetic testing with medication that could prevent the cancer cells from multiplying.
“We are targeting only the abnormal cells and leaving the normal cells alone,” said Dr. Christine Lu-Emerson, Francis’ physician and a brain tumor specialist. “Medicines won’t reverse the mutation, but the idea is to target those cells and stop them from replicating.”
The precision therapies are much different from traditional cancer treatment. Chemotherapy and radiation work in tandem by seeking to destroy cancer cells, but in the process also destroy some regular cells, leading to side effects such as hair loss and general fatigue.
Francis’ quarter-sized tumor was removed in February 2018, but he became eligible for the Jackson Lab study early this year when the tumor grew back, despite undergoing surgery, chemotherapy and radiation. He has been taking the specialized medicine for about five weeks, and the goal is to prevent his tumor from growing.
Francis will have frequent MRIs to track the tumor, which is above his right ear. During a recent checkup, Sam Gagnon, a Maine Med physician’s assistant involved in Francis’ care, put Francis through a number of tests to check his motor skills. Among the tests, Francis touched his finger to Gagnon’s finger, tracked objects with his eyes and moved his legs and arms. Gagnon said everything is working well so far, and Francis has near-normal brain functioning.
“If the MRI is showing it’s keeping everything the same, that’s a win,” Gagnon said. “If the tumor shrinks, we pop bottles of champagne.”
Francis said he noticed some occasional slight numbness in his left leg, but otherwise felt well.
Figuring out which medication would be most effective to combat the cancer is crucial, and where Jackson Lab is a critical component.
Dr. Jens Rueter, who heads up the Maine Cancer Genomics Initiative at Jackson Lab, said genomics research is moving so rapidly that doctors need help interpreting and learning about the best course of action for their patients. That’s where Jackson Lab steps in, providing testing for the cancer cells, helping doctors interpret the test results and offering treatment recommendations, often drawing from national experts.
“It’s very hard sometimes to dig out the correct information from the report,” Rueter said. “The results need to be interpreted correctly so that it’s not just an alphabet soup, so that we can find the right biologic rationale. This is all so new (that) many oncologists don’t have the expertise, and they’re not teaching it yet in medical school.”
Rueter said the study will have many benefits, as the nearly 2,000 patients will all be Mainers, and many different types of cancer will potentially be treated using the therapies.
As a clinical study, there is no cost to the patient, and patients and doctors won’t have to make appeals to insurance companies, which sometimes turn down the precision therapy because it can be labeled “experimental,” Rueter said. And the study will help advance research on genomics and cancer.
NEAR-DEATH EXPERIENCE
To Francis, the “miserable” experience of chemotherapy and radiation, plus knowing it didn’t work to prevent his tumor from re-growing, made him eager to try the targeted therapy.
He said when he heard he could be part of the genomic study, he immediately agreed.
“I thought, ‘OK, this is different but it seems promising.’ I was willing to give it a shot,” Francis said. “I’m going to do whatever I need to do to nip this in the bud and take care of it. I’m not going to let this get me down.”
His prognosis is still uncertain, and glioblastoma is an aggressive cancer. It caused the deaths of Sens. John McCain of Arizona in 2018 and Ted Kennedy of Massachusetts in 2009. Glioblastoma patients on average live 10-12 months with the condition, and Francis has already survived for 14 months after a seizure that nearly killed him on Feb. 3, 2018.
Francis, a former short-order cook, was living in Spruce Head at the time and would have died had his uncle not discovered him in the early morning hours “purple and not breathing” from seizures caused by an undetected tumor. He was taken to Pen Bay Medical Center, then transferred to Maine Med, where they were able to stop the seizures.
“I remember people saying, ‘He’s awake, he’s awake,'” Francis said. “I woke up in the hospital in Portland surrounded by doctors. I didn’t know where I was, who the president was or what year it was.”
Within weeks, surgeons removed his tumor and by March he had started his chemotherapy and radiation, which made him vomit frequently, and left him fatigued and weak. By the end of 2018, his tumor had started to grow back.
Now, Francis said, after switching to the precision medicine, he feels better, and he likes knowing that his case is part of scientific research that may lead to even better treatments for cancer, potentially helping many people in the future.
“When I first heard about it, it freaked me out a little bit,” Francis said. “But everything about it has been fantastic.”
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