Living With Multiple Myeloma: Nurses as the Lifeline

Multiple myeloma patient Doug Rickert [right], with Ann McNeill, RN, MSN, APN, from the John Theurer Cancer Center multiple myeloma team.

In 2001, Doug Rickert, a 46-year-old industrial management consultant and married father of 3, heard the life-altering words, “softball-sized tumor pressing against your spinal canal.”

The tumor had been detected on an MRI, and, a subsequent biopsy at Hackensack University Medical Center (HUMC) revealed Doug had multiple myeloma. HUMC medical oncologist Andrew Jennis, MD, told Doug that while incurable, his cancer was manageable with a regimen that began with radiation, moved on to enrollment in a clinical trial of thalidomide (Thalomid), and also required treatment with several other drugs, including dexamethasone (Decadron), zoledronic acid (Zometa), and valacyclovir HCl (Valtrex). Ultimately, the goal was to prepare Doug for a stem cell transplant.

Doug soon began a treatment course at HUMC (now the John Theurer Cancer Center) that would last 9 years. He knew that his family—his wife, 2-year-old son, and twin 5-year-old daughters—would be his inspiration during what would be a very literal fight for his life. What Doug didn’t yet know, but would soon realize, is that his nurses would be his lifeline.

Multiple Myeloma: A Patient’s Treatment Journey

• November 2001: Radiation therapy
• January 2002: Enrollment in thalidomide (Thalomid) trial
• June 2002: Peripheral stem cell transplant
• July 2002: Beginning of 18-month remission
• December 2004: Thalidomide regimen reinitiated after relapse
• July 2006: Thalidomide replaced with lenalidomide (Revlimid); zolpidem (Ambien) added to aid with sleep
• October 2006: Temporary interruption of access to lenalidomide, necessitating return to thalidomide protocol before reinstatement of access to lenalidomide
• December 2006: Remission achieved and maintained for 25 months
• May 2009: Relapse and subsequent enrollment in carfilzomib trial; duloxetine HCl (Cymbalta) added to help control neuropathy
• August 2010: Remission achieved and maintained for 3 months
• December 2010-present: Entry into carfilzomib trial and subsequent maintenance regimen

Treatment Begins: Nurses to the Rescue

Only 7 days after his diagnosis, Doug began the regimen recommended by Dr. Jennis. This was only the first leg of Doug’s long treatment journey (see “Multiple Myeloma: A Patient’s Treatment Journey”), which would eventually lead to his enrollment in a clinical trial of carfilzomib (see Carfilzomib Timeline), a selective, next-generation proteasome inhibitor that Doug is currently receiving in maintenance therapy.

Without hesitation, Doug credits his nurses with seeing him through every twist and turn along the way, citing the compassion and take-charge attitude of those who cared for him during treatment, and the extraordinary knowledge and concern of those who prepared him for every eventuality of his drug regimens and trial protocols.

A nurse named Anne Marie, who worked with Dr. Jennis, made a particularly strong impression on Doug early in the course of his treatment. “I really was astounded by the extent of her expertise and was truly touched by her compassion. In every way she was a true extension of my doctor, and was always there to answer questions, solve problems, and allay my concerns—something I’ve seen time and time again over the years.”

It was, in fact, that combination of expertise and compassion that Doug needed and received during his first week-long hospitalization, when he got a taste of an unfamiliar and unpleasant feeling: helplessness. “Any movement was painful, and I was fighting the nurses who were trying to move me from the gurney to my bed,” he says. “Finally, one of the nurses looked me right in the eye and told me that I simply needed to stop. I still remember her saying, ‘This is what we need to do, and this is how we’re going to do it.’ At that moment I just let her take charge and do what needed to be done. It was actually a relief to give over that momentary control to someone who knew what she was doing.”

Multiple myeloma patient Doug Rickert celebrates Father’s Day 2002 with his son and twin daughters after undergoing peripheral stem cell transplantation. He carries this photo in his briefcase to this day.

Doug credits a number of nurses with helping him to navigate the clinical trial process, but is especially grateful to Multiple Myeloma Division Oncology Research Nurse Coordinator Laura McBride, RN, BSN, OCN®, CCRP, who he says took great pains to make sure he knew what to expect. “We do all we can to inform our clinical trial patients about known treatment effects,” she says, “but equally important is our ability to make patients understand that we don’t always know all the short- and long-term adverse effects associated with a particular drug in an early-phase trial; hence, the reason the drug is being studied.” It is because of this uncertainty, says McBride, that the research team makes every effort to forge a true partnership with clinical trial patients, and to give each patient a go-to person for questions and concerns. “There’s no doubt that Doug’s optimism and upbeat attitude helped him through the process,” she says.

Doug’s memories of his clinic visits during preparation for his stem cell transplant are just as vivid. “Back then the process was sterile and lonely, with virtually no visitors allowed,” he says. He recalls the tedium of the daily trips between his HUMC patient apartment and the clinic, where he spent 8 hours each day, and also recalls the attentiveness of his nurses and the way they walked him through each step of the process and made certain he knew what to expect. “I was lucky that I tolerated almost all of my treatments very well and didn’t experience most of the side effects I was told about,” he says. “But knowing what might happen gave me a sense of control.”

Carfilzomib Timeline

Carfilzomib, a selective, next-generation proteasome inhibitor that has demonstrated encouraging response rates and tolerability in patients with advanced multiple myeloma, was granted orphan drug status by the FDA in 2008. In December 2010, positive results from a phase IIb 003-A1 study of single-agent carfilzomib for patients with relapsed and refractory multiple myeloma were announced. Only a month later, in January 2011, the drug was granted fast-track designation by the FDA, giving hope to the more than 50,000 US residents currently living with this second most common hematologic cancer, as well as to the 20,000 diagnosed with the disease each year.

Through the fasttrack designation, Onyx Pharmaceuticals has initiated a rolling submission of a new drug application (NDA) for possible accelerated approval. With the nonclinical section of the NDA already submitted, Onyx hopes to complete submission as soon as possible.

Currently, the “Carfilzomib Development Program” includes a large, international, randomized phase III trial (ASPIRE), in which investigators are studying the combination of lenalidomide (Revlimid) and low-dose dexamethasone (Decadron) with and without carfilzomib in patients with relapsed multiple myeloma. A second phase III trial (FOCUS) is being conducted in Europe, and involves analysis of carfilzomib in patients with relapsed and refractory disease. An investigator-sponsored program is also evaluating the drug as a first-line multiple myeloma treatment, in combination studies, and to treat lymphoma and other malignancies.

David S. Siegel, MD, PhD, chief, Multiple Myeloma at John Theurer Cancer Center discusses the FDA approval process for Carfilzomib

Throughout it all, Doug kept a promise to himself to never “play the cancer card” or use his illness as an excuse. “That would have gotten me nowhere,” he says.

Indeed, it’s Doug’s optimism and positive attitude that John Theurer multiple myeloma team member Ann McNeill, RN, MSN, APN, admires most about the patient she first met in 2005. “I’m a firm believer in the role that emotions and attitude play in coping with a cancer diagnosis,” she says. “Doug’s attitude has always been positive, and there’s no doubt that his optimistic outlook has been an asset.”

McNeill goes on to note that frequent office visits, scheduling of diagnostic tests, undergoing treatment, and dealing with adverse effects can all be extremely challenging, adding that patients and family members often seek out nurses to answer their questions and allay their concerns. “Supporting our patients by clearly outlining treatment plans, providing calendars that delineate those plans, and providing assistance in making follow-up appointments will likely help to reduce anxiety,” she says.

Doug, who is especially grateful to McNeill for an unrivaled level of compassion and accessibility, says he was able to essentially carry on with his life and work because he knew what to expect throughout the course of his treatments. “When patients are educated about their medications and their potential adverse effects, they’re more likely to comply with the treatment regimen,” says McNeill. “Open communication is the key.”

An Eye Toward the Future

Today, Doug isn’t always sure whether his aches and pains are due to his myeloma or to the fact that he’s now nearly a decade older than when he began his journey. He has neuropathy but overall “feels great” and has hope for the future. He does his best to encourage others just beginning the struggle that he now knows so well, and also attends multiple myeloma fundraisers and volunteers his services at a local blood bank.

At home, Doug’s cancer is rarely a topic of discussion. “My hospital bracelet is the only clue that I’ve been at the clinic for treatment,” he says. “I don’t want anyone to make a fuss. It’s just a fact of life, a necessary evil.”

Even so, Doug allows himself a small indulgence in the form of a now-wrinkled photo he keeps in his briefcase. “It was Father’s Day 2002 and just about a week after my transplant when the kids were given special permission to visit. Their smiling faces, along with my sunglasses and headphones, remind me that life went on even then, and certainly goes on now. It’s all about attitude, and it’s all about hope.”