For One Patient with Neuroendocrine Tumors, Being First Matters
July 12, 2018
| by Wayne Lewis
Lynn Degroot, neuroendocrine tumor patient
Lynn DeGroot is something of a medical pioneer.
She was the first patient at City of Hope to receive a targeted therapy called Lutathera PRRT
following recent FDA approval for counteracting certain neuroendocrine tumors. Since City of Hope is one of the first centers nationwide to offer Lutathera, that makes DeGroot one of the first patients to receive the treatment.
The path there included mysterious symptoms and difficulty in diagnosis and treatment. At City of Hope under the care of neuroendocrine tumor expert Daneng "Dan" Li, M.D.
, she has found a trustworthy ally and a new measure of optimism in facing an intractable disease. Being at the leading edge of treatment makes a big difference to DeGroot.
“I feel fortunate for the timing, because it was the sooner the better to get this,” said the La Cañada, California, resident. “The stars kind of aligned for me.”
The trouble began in 2015. A low blood count in routine testing presaged what would remain persistent symptoms of weakness and exhaustion. A gauntlet of invasive medical tests provided no insight. Finally, in an emergency room visit for a severe stomachache, a CAT scan revealed blockage in DeGroot’s small intestine.
The next step — dealing with her neuroendocrine tumor diagnosis — was not that straightforward. It was difficult just to find a specialist.
“It was so overwhelming at first,” she said. “Everybody says that you have to kind of be your own doctor with this cancer.”
Neuroendocrine tumors arise in the lungs or the gastrointestinal tract, from tissue that resembles both nerve and hormone-releasing cells. The malignancy is uncommon — with only 12,000 new cases each year in the U.S. — and typically slow-growing. Although there currently is no cure, the few existing options for therapy keep some patients alive and well for decades.
Unfortunately, DeGroot’s case was atypical.
In a procedure in November 2016, her surgeon discovered more than a dozen tumors that had metastasized to her liver. He removed all that he could find, but new growths appeared in follow-up imaging after surgery.
She tried the current medicines for neuroendocrine tumors — treatments that mimic a hormone called somatostatin, for which these growths tend to have an abundance of receptors. The therapies did little to help and exacted serious side effects.
“When I met him, I felt like I finally had a good advocate,” DeGroot said. “Every step along the way, he was trying to make my life easier.”
After a redoubled attempt with a somatostatin analog didn’t help, there was one last recourse: a therapy newly approved by the FDA.
For years, physicians in Europe have offered a targeted radiotherapy called “peptide receptor nucleotide therapy,” or “PRRT” for short. In neuroendocrine tumors, an engineered doppelganger of somatostatin will latch onto the cancer cell. Then an attached radioactive molecule with a small range of effect attacks the disease with minimal damage to healthy tissue.
Until very recently, neuroendocrine tumor patients in the U.S. could gain access to PRRT only through clinical trials.
But one trial, codenamed “NETTER-1,” produced persuasive results. It compared Lutathera PRRT, a medicine by Novartis, with an existing standard of care among patients with advanced disease of the midgut. As reported in the January 2017 edition of the New England Journal of Medicine, PRRT produced six times both the response rate and the rate of progression-free survival.
In late January 2018, the FDA approved Lutathera for somatostatin-positive neuroendocrine tumors of the pancreas or the small intestine.
Li concentrated his efforts upon making sure that DeGroot and other City of Hope patients could receive Lutathera, and have it covered by insurance, as soon as possible.
He said: “We don’t leave any disease behind, no matter how rare. We wanted to bring this technology here immediately after approval and not wait, because some patients were already suffering and had no options. We wanted to quickly change that.”
By March, Li and his colleagues could offer Lutathera PRRT. Attempting to prolong her life and maintain the quality of that life, DeGroot became the first to receive outpatient therapy in a daylong visit to City of Hope.
“It was a gift that the timing was right,” DeGroot said.
In the weeks since the initial treatment, she’s seen some improvement in her day-to-day energy level. More than that, there is hope.
But DeGroot’s story is one that is still in progress. She recently received her second treatment. The result is still uncertain.
“I’m trying to have a positive attitude while keeping my expectations in check,” she said.
Living with a daunting diagnosis, DeGroot takes inspiration from a quotation by author and spiritual teacher Eckhart Tolle: “Acceptance of the unacceptable is the greatest source of grace in this world.”
De Groot said: “I want to live with courage and grace. I certainly don’t do it perfectly, but I do my best.”
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