There's nothing like cancer, many survivors say, to remind you that nothing is guaranteed... good or bad
It was tough on teachers when the COVID-19 pandemic suddenly shut everything down in March 2020. Many educators were fortunate to be able to work virtually — out of harms’ way.
Those who had school-age kids simultaneously became teach-from-home and teach-at-home moms. The heavy lifting that required, particularly in the new COVID-19-normal of uncertainty and fear, could be anxiety-inducing.
So, when Renee Garber — a teacher with the Hill Learning Center in Durham, North Carolina — felt a nagging pain in her stomach night after night as she read bedtime stories to her daughters, then 6 and 8, she blamed it on stress.
“I have two young girls. And you know, just juggling everything; I felt stressed a lot,” recalls Garber, a breast cancer survivor.
She wasn’t particularly concerned when her March 2020 oncology appointment at the Duke Cancer Center Breast Clinic — a six-month surveillance visit — was postponed until July.
“It was one less thing to think about having to do,” she thought. Plus, she couldn’t conceive of any acute need to be seen by her oncologist.
Then, gradually, her twice-weekly three-mile runs started leaving her breathless. She was getting so winded that she could barely make it up the stairs without having to sit down again. On Mother’s Day weekend she felt noticeably worse.
Spring 2020: Covid-19 or Cancer?
With COVID-19 spreading and spiking around the country, her husband urged her to call her doctor, Julie Lindsey, MD (Duke Primary Care Meadowmont . She saw her for a telehealth appointment.
“I told her, ‘I don't think this is COVID. I don't have a fever. I don't feel fluish, and I haven’t gone anywhere,’” Garber recalls. “And she said, ‘Yeah, you know, it doesn't sound like COVID, it’s probably just stress.’”
Lindsey scheduled Garber for an in-person exam and blood work the following week, on May 27, just to make sure.
Later that night, as Garber watched a movie, missed calls amassed on her phone, which was buried in her purse in another room. Lindsey had been frantically trying to reach her. The central message — her bloodwork was “off” and she needed to go to the hospital right away.
“She did not say she thought it was cancer. She said she wasn't sure what was going on,” remembers Garber.
“I went to the ER (Duke University Hospital, Durham). Everything got rolling really fast. They did a CT of my chest and abdomen that night that came back with suspected cancer metastases on my liver. I went home around 3 A.M. I think Dr. Sammons called me right at eight and wanted to get me on the schedule.”
Garber barely knew her new oncologist, Sarah Sammons, MD, who’d taken her on as a patient when Kim Blackwell, MD, left clinical practice. She’d seen Sammons only once — in October 2019 for a six-month surveillance visit at the Duke Cancer Center Breast Clinic in Durham. But Sammons was already on the case. On May 29, they spoke on the phone about the results of her hospital scans and on June 3 they met in-person at the clinic.
In addition to cancer throughout her liver, with further testing they would discover it was also in her bones, bone marrow and stomach/GI junction.
It had been nearly four and a half years since her primary care doctor, the same internist who sent her to the hospital, found a lump in Garber’s left breast and lymph nodes. The discovery was made during her annual physical (February 3, 2016). After a referral to Duke, Blackwell had diagnosed her with stage 3 lobular breast cancer. She underwent a double mastectomy then several rounds of chemotherapy and radiation. Her cancer stabilized.
The initial diagnosis of breast cancer never made sense to Garber.
“I don't fit the profile. I don't smoke. I'm not overweight, you know nothing like that,” says Garber, who was 34 at the time. Neither does she have a family history of breast cancer or harbor any mutations in either the BRCA 1 or BRCA2 genes in her DNA that raise breast cancer risk.
Garber’s cancer is hormone receptor positive (HR+) — in her case both ER+ and PR+. This means that her breast cancer cells need the hormones estrogen and progesterone to grow. Hormone therapies — a go-to in advanced ER+/PR+ cancer — act to reduce the level of these hormones in the body.
After completion of chemo and radiation therapy in 2016, she’d been prescribed monthly injections of Lupron (leuprolide) and daily Femara (letrozole) pills — to tamp down estrogen and progesterone production so that any remaining cancer cells might grow more slowly or stop growing altogether. In August 2019, she’d opted for surgical removal of her ovaries, which produce the hormones, so she didn’t have to continue to pay for the costly Lupron injection and so she could avoid “the mental challenges of being on the chemo floor every month.” She continued taking Femara.
But there Garber was in June 2020, “back on the chemo floor” of Duke Cancer Center. This time she was facing stage 4 disease, in the middle of a global pandemic, no less.
Summer 2020: A Tailspin
Sammons quickly deployed the hormone therapy Faslodex (fulvestrant), an older drug used in HR+ patients to reduce the estrogen activity in the body, in combination with Verzenio (abemaciclib), a Cyclin-Dependent Kinase 4/6 inhibitor which, by targeting the CDK4 or CDK6 protein, decreases the amount of estrogen that can be taken into a cancer cell, thereby slowing the rate of cancer cell expansion.
This combination had shown promise in patients, like Garber, whose cancer is both characterized as HR+ as well as HER2 negative, which means that there’s a normal level of human epidermal growth factor receptor 2 protein in the breast cancer cells.
But two weeks into the treatment, Garber’s health went into a tailspin.
“At that point, at least from how I understand it, I was already in such bad shape that it (the drug combo) didn't even have time to work. Within the time they put me on it to two weeks later, I was going downhill so fast. The word they used was — ‘visceral crisis,’” Garber recalls. “I had to look it up.”
She learned she was facing severe organ dysfunction and rapid disease progression.
Sammons quickly pivoted from treating her with the Faslodex/Verzenio combo to a weekly infusion of Taxol (paclitaxel), a natural-source cancer drug (derived from the bark of the Pacific yew tree) and one of the most common and effective chemotherapy drugs for breast cancer — but with potentially toxic side effects.
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. (see article sidebar)
“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 — are known to respond longer on alpelisib than someone with only one.to treat advanced breast cancer in patients with a PIK3CA mutation. Patients with two PIK3CA mutations, Sammons says,
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.”
Summer & Fall 2020: Celebrations & Restoration
Garber celebrated her 40th birthday this summer with her parents, her kids, her sister and her sister’s family at the New River Gorge National Park in West Virginia.
In September she joined her best friends from her New Jersey high school for a 40th-birthday-bash-I-made-it-a-year-celebration in Arizona.
They hiked the mountain ridges above Phoenix did Reiki and restorative yoga on the Red Rocks of Sedona.
In October, she flew to New York City for a much overdue trip to see Hamilton on Broadway.
Garber celebrated Thanksgiving with her family and will see extended family over the Christmas holiday as well.
She goes to the Breast Clinic every four weeks for bloodwork and gets scans every three months. Most of her bloodwork now is very close to normal.
Not everything with her liver or bones is in the normal range, but she says, “It’s far closer than we ever thought possible.”
“Honestly, I can't believe I'm still here. I feel like I got a bonus year.”