Capitol Hill Communications

Camilla Marston sits on an over-sized sofa in a sunlit room. For the past six months she’s been quarantining at home. A lavender candle perfumes the room. A water glass, a vase of flowers, and heart-felt sympathy cards sit on her coffee table. A monthly calendar is stacked atop a thick binder of materials from Mercy Health Systems. The bold black type along the binder’s spine is glaring: “Multiple Myeloma: Patient Information.” She meticulously keeps track of doctor appointments, medication refills, and the latest research around her disease.  

The weight of a new cancer diagnosis during a global pandemic is heavy. Yet Camilla has found hope and she is beating the odds.

“I was living a full, active life.”

“Earlier this year I was golfing twice a week, spending time with my grandchildren, and volunteering on several nonprofit boards,” Camilla explains. Other than an immune deficiency that she’d lived with for years, she considered herself a healthy 66-year-old enjoying retirement from her law practice. 

In March everything changed. 

Only two weeks after the World Health Organization declared the novel coronavirus disease (COVID-19) a global pandemic, Camilla recalls driving to the hospital where her orthopedic doctor worked in Richmond, Virginia, with shooting pain in her left arm. She had been taking precautions by staying home given her weaker immune system, but the pain in her arm eclipsed her worry about seeing a doctor. 

“Bad cells had been growing inside me without any signs.”

Within two hours of entering the hospital, an oncologist was called into the room where Camilla awaited her x-ray results. 

“It really felt surreal,” she recalls. 

Her diagnosis was advanced multiple myeloma, a less common cancer that forms in a type of white blood cell called plasma.

According to the Cleveland Clinic, plasma cells reside inside bone marrow producing abnormal proteins that damage the body and damage the immune system. People with multiple myeloma have malignant plasma cells. When cells are malignant, they can spread to other areas in the body. 

“These bad cells were on hyper drive, replicating at lightning speed inside me,” Camilla recalls. “They were growing without any signs, until I felt horrible pain,” she says. 

A two-inch tumor growing in one of the larger bones in her forearm, the radius, had caused the bone to fracture. Her imaging test also revealed a tumor in her hip and a dozen smaller growths along her spine.

Camilla says the oncologist gave her less than a year life expectancy.

An incurable disease where no two patients are alike.

According to the American Cancer Society, around 32,000 people in the U.S. are diagnosed with multiple myeloma each year. For perspective, breast cancer diagnoses totaled over 268,000 in 2019. Experts conclude multiple myeloma is an incurable disease, but one that can be treated to improve and prolong a patient’s life. 

Ashley Lake is a chemotherapy and biotherapy nurse who was part of Camilla’s care team for the first few months while Camilla was in a full arm cast and couldn’t perform some  household tasks without assistance. “A cancer diagnosis where the disease is in an advanced state is difficult for patients to process, but multiple myeloma is one of the most complex diseases,” says Lake.

Lake explains that unlike some cancers that are classified in stages (I, II, III), the genetics of a multiple myeloma patient informs treatment and prognosis. “Since everyone’s DNA, the carrier of the body’s genetic information, is unique, treatment for multiple myeloma can be different for every patient,” Lake says.

In Camilla’s case, a genetic screening found her DNA “unfavorable” to the more standard types of treatment. “Combined with her weakened immune system, Camilla’s prognosis wasn’t as promising as we’d hoped,” recalls Lake.

Yet Camilla refused to concede to predictions.

“Despite it all,” Lake says, “Camilla was positive and proactive. She is such a smart woman, asking questions and wanting to know the why behind the treatment recommendations.”

The treatment journey begins.

Within several days of diagnosis, Camilla underwent radiation therapy. This was followed by starting a four-drug chemotherapy regimen called “Dara-RVd” which represents the four drugs daratumumab, Revlimid (lenalidomide), Velcade (bortezomib), and dexamethasone. Two of these drugs are taken orally at home, while two are administered weekly at the hospital through infusion and injection.  

“I agreed to include the addition of a fourth drug, daratumumab,” Camilla explains. “This drug was recently introduced to multiple myeloma therapy, and is showing early signs of success,” she says.

Camilla recalls spending hours researching her treatment options. 

“I read a lot about the four drugs’ side effects, and consulted with the oncology center’s pharmacist Elizabeth,” Camilla recalls. 

Elizabeth Kaster is an oncology clinical pharmacist and also part of Camilla’s care team at Bon Secours Cancer Institute at St. Mary’s Hospital. “Camilla’s four-drug chemotherapy regimen is a relatively new treatment, but we’re seeing a lot of success if the patient can tolerate the drugs,” Kaster says. “It’s been remarkable how few side effects Camilla has experienced,” notes Kaster.

Camilla experienced dehydration, sleep disruption due to trouble sleeping at night, and a sensitive stomach, but, “All things considered,” she notes, “I am doing well.” Camilla is disciplined about following a bland diet, drinking lots of water, continuing physical therapy for her arm, and going on daily walks around the 16-acres of land surrounding her home.

Each week Camilla drives to her infusion appointment, undergoes a temperature check, and answers a series of COVID-19 screening questions. She’s then admitted into the lab for her pre-infusion testing. Now most visits to the infusion center last around 4 hours.

“Before the pandemic, patients could bring a companion to sit with you during infusions, but I have to go alone,” Camilla explains. 

“It can feel like a very long day, especially at first when they had to administer the chemo drugs more slowly, checking for side effects, but now I know what to expect. I bring a book and sometimes I close my eyes and rest,” she says. 

Camilla contemplates a transplant.

While undergoing chemotherapy and continuing to quarantine at home, Camilla considered a stem cell transplant, at her oncologist’s recommendation, with consultation from Dr. Christine Gasparetto at the Duke Cancer Institute. According to the Mayo Clinic, research continues to show high-dose chemotherapy and stem cell transplantation are the best treatments available for many patients with multiple myeloma.

“Having a stem cell transplant is a big decision,” Camilla recounts, “and one I wasn’t going to agree to without fully understanding. Plus, the risk of exposure to COVID-19 was a factor given my weaker immune system.”

Camilla meticulously reviewed as much information about stem cell transplantation as possible.  

“I spent hours reading how other health centers were treating patients,” she reports. “I started following a few doctors’ incredible work in multiple myeloma treatment and it was inspiring,” Camilla explains. She was particularly impressed by Dr. C. Ola Landgren, a Hematologic Oncologist at Memorial Sloan Kettering Cancer Center.

A phone call she will always remember.

Part of the preparation for a stem cell transplant is a bone marrow biopsy. A few days after her biopsy, Camilla received a phone call she will always remember. 

“They told me the biopsy had returned results of no cancer detection,” Camilla smiles. “It appears the four-drug chemo is working.”

 She’s decided to wait on a transplant. 

“My body is stronger than I ever thought.”

Life in insolation marches on. Camilla has stayed home for nearly seven months, only leaving the house for her weekly chemotherapy. She has occasional visits from family or friends, sitting outside on her porch, masked, six feet apart. 

“I don’t want to live in a bubble, but if that’s what it takes right now, I accept it,” she says.

Paging through the calendar on her coffee table she points to November. “If all goes to plan, I’ll start maintenance chemo next month,” she says. 

Camilla takes a big sip from her glass of water. Light reflects off the glass and casts a colorful prism on the wall behind her. 

“I’m looking forward now. I would like more freedom of movement. I have hope that will come, once there is an approved COVID-19 vaccine.”

“There isn’t one path to follow with multiple myeloma,” Camilla says. “I’ve learned so much about this disease and my body is stronger than I ever thought.” 

For more information about multiple myeloma visit Multiple Myeloma Research Foundation.

Bibliography

Mayo Foundation for Medical Education and Research, 2020. 1, October 2020. <https://www.mayoclinic.org/diseases-conditions/multiple-myeloma/symptoms-causes/syc-20353378>

“What You Should Know About COVID-19 and Chronic Medical Conditions” Cleveland Clinic. 30, June 2020. <https://health.clevelandclinic.org/faqs-what-you-should-know-about-covid-19-and-chronic-medical-conditions/>

“The Role of High-Dose Chemotherapy Supported by Hematopoietic Stem Cell Transplantation in Patients With Multiple Myeloma” National Center for Biotechnology Information. 17 October 2014.<https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4201373/>

“What is Multiple Myeloma?” American Cancer Society. 28, February 2018. <https://www.cancer.org/cancer/multiple-myeloma/about/what-is-multiple-myeloma.html>

“Frequently Asked Questions about CAR T-cell Therapy” Dana-Farber Cancer Institute. 1, October 2020. <https://www.dana-farber.org/cellular-therapies-program/car-t-cell-therapy/faq-about-car-t-cell-therapy/>

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