Summer 2020: A Tailspin

Garber couldn’t believe she’d reached that point of seemingly no return so quickly.

It fell to her husband and parents that summer to explain to the kids, “This time mommy is really sick." The family also got some counseling support through DCI's Duke Cancer Patient Support Program.

“Now looking back, I’m like, ‘Gosh, even when I read to my kids at night last year, I'd have to put a pillow against my stomach because it hurt and that's not normal,’” Garber concedes. She’d carried on, despite the pain, through nearly the entire school semester. “I'm learning to accept that I have a really high pain tolerance. And especially when you're a mom, you know, it (your pain) just falls to the wayside.”

In August, a couple months into chemotherapy treatments, Garber was hospitalized with a staph infection. The area around her chemotherapy delivery port, surgically implanted in June, had become infected.

The port was removed and a PICC line (a type of catheter) was placed in the interim. Later, a new port was implanted. By early September, her cancer marker numbers were stabilizing, but she had to cut back on her Taxol dosage.

“The cancer didn’t seem to be growing, but the chemo was really hard on my body,” she recalls. “I lost all my fingernails and toenails. I had horrible mouth sores, you know, going down my throat. I lost all my hair, eyebrows, eyelashes, everything. And I just was so weak. I looked like I was dying.”

Garber’s doctors were not sure she would last a year.

2021: A New Year, A New Protocol

Sammons had sent Garber’s tumor tissue for comprehensive genomic profiling (also called next-generation sequencing or NGS) in June 2020. The test, which can screen for hundreds of possible genomic mutations in a patient’s cancer cells, is especially critical for patients who are running short on treatment options.

Some of the newest and most exciting cancer drugs on the market or in clinical trials can target the specific genomic mutation that’s driving the growth and spread of cancer in a patient’s cancer cells; thereby slowing that growth or shutting it down. At Duke Cancer Institute there’s a sophisticated database — the Duke Frameshift Molecular Registry of Tumors (or Frameshift MRT) — that interpolates the NGS data for each patient and issues alerts to clinicians when it finds that their patient has a potentially druggable genomic mutation. This includes FDA-approved drugs as they come on the market or drugs in clinical trials. The tests have become increasingly routine for patients with metastatic cancer as more and more “targeted therapies” are developed.

In Garber’s case, the NGS testing revealed two PIK3CA mutations (genomic alterations). PIK3CA mutations are known to be present in about 40% of HR+/HER2 negative breast cancers.

Fortunately, there was a new drug called Piqray (alpelisib) — a pill developed specifically to target 11 known PIK3CA mutations — that was FDA-approved in 2019 in combination with the hormone therapy fulvestrant (Faslodex) to treat advanced breast cancer in patients with a PIK3CA mutation. Patients with two PIK3CA mutations, Sammons says, are known to respond longer on alpelisib than someone with only one.

This new treatment had the potential to prolong Garber’s survival, provided she could stomach the side-effects of Piqray — including being diarrhea, rash, nausea, and fatigue (the most common) as well as decreased appetite, stomatitis, vomiting, weight loss, and hair loss.

Hyperglycemia, a rise in glucose, was also a known side-effect — with varying degrees of severity — in more than two-thirds of patients. Because Garber’s liver had sustained so much damage from cancer and cancer treatment — it had become cirrhotic — this specific side effect could be dangerous if not managed properly. (The liver not only acts as the body's glucose reservoir but helps to steady the body’s circulating blood sugar levels)

Garber was determined to make the diet and lifestyle modifications necessary to keep her body in working order. She wanted more time with her girls. Before starting the new therapy, she consulted with Heather N. Moore, PharmD, BCOP, CPP, a DCI clinical pharmacist practitioner with the Duke Cancer Center Breast Clinic.

“Duke is fabulous in the sense that before they put you on medication, you meet with the pharmacist a week or two beforehand. Heather on the breast cancer floor is wonderful. She went over everything. For me, I had to have a strict low-carb diet because I can't regulate the blood sugar. Therefore, she put me on Metformin proactively, a diabetes medicine,” says Garber.

While she was healthy before her cancer diagnosis, she’d never been one for a low carb diet, but she did as she was advised because her life depended on it.

Once starting the drug combination, she met regularly with a Duke Integrative Medicine Center-based dietician.

The gastrointestinal side effects, which can be severe, didn’t hit her until a couple months in, but she worked out a formula for dealing with that and the drug became what she considered “manageable."

The lymphedema in her arm, a long-term side effect of breast cancer treatment, has been one of her worst side effects. Each week, to mitigate the discomfort from swelling, physical therapist Leigh Wilfley, DPT, CLT, PT, at Duke Primary Care Meadowmont wraps her arm. She also wears a daily compression sleeve — and utilizes a FlexiTouch pneumatic compression device, nightly, to stimulate lymphatic function and reduce swelling.

“I have a protocol in place. I take the drugs that I'm supposed to take and I make sure I walk every day. I do barre classes now. And I love yoga, but yoga doesn't always help the lymphedema situation. But I stay active, and now I'm feeling so much better,” shares Garber— about a year since her near-death experience and a couple months shy of a year on the alpelisib/fulvestrant combo. “I almost have all of my nails back. My hair is still thin, but I have hair and I will happily have this much hair for as long as it lasts… I feel like I've been really lucky because I know that many people have a really hard time with this drug.”