Myeloma Patients, Partnership and Education

By Bonnie Falbo

As the wife of a myeloma patient, and as a new Myeloma Coach for the Myeloma Crowd, I was honored to attend the Inaugural Charlotte Plasma Cell Disorder Congress, hosted by Levine Cancer Institute on August 9-11, 2019.

Intended primarily for local health care providers who treat myeloma patients, Myeloma Coaches and other patient advocates were encouraged to attend. As Dr. Saad Usmani, the organizer of the Congress said:

“This is about promoting partnership between physicians and patients.”

This was a new, rare experience for me—or any patient or caregiver, for that matter. I had the opportunity to listen to presentations from American and European experts including Dr. Robert Kyle from the Mayo Clinic, considered by all myeloma specialist to be the father of field. He embodies the passion, devotion and tireless efforts of myeloma specialists. This meeting was one with an agenda designed to peel back the layers of this complex cancer for community oncologists. It also exposed paths toward a cure.

This desire of physicians to partner with well-informed patients and caregivers is a dramatic paradigm shift from the paternalistic roots of the doctor/patient relationship. It offers those of us who live with this disease—as patients and caregivers—to listen, ask questions and voice what is important to us. As patient advocates, we are committed to sharing what we learn and to offering support, and as Myeloma Coaches we volunteer to listen and help you find and use the best myeloma resources to better navigate your own myeloma care.

Myeloma is a cancer where the progress is exponential. The future is filled with hope. Yet there are many unanswered research questions and the path to curative treatments is still different for every individual.

Myeloma has many subtypes—which are increasing with greater understanding of the disease—and unique features. A good physician will present a variety of treatment options to help patients to decide what is best for them.

A basic understanding of the disease process and the ability to ask informed questions is essential. It is not about having the answers, but about the ability to engage in decisions that involve your quality of life, values and lifestyle.

The Myeloma Community is a powerful one that offers multiple opportunities for learning, sharing and garnering support. There are conferences offered throughout the year by various myeloma organizations that include opportunities to converse with myeloma experts as well as to meet other myeloma patients and families.

There is tremendous positive energy and I encourage everyone living with this disease to try attending at least one. I have attended a Myeloma Crowd Round Table and hope to do so again.

There are also support groups and one-on-one coaching opportunities available through the Myeloma Coaching program. If you’re wondering what coaching is, it’s a partnership centered around you and your needs. A coach listens to you from a place of being totally present without judgment. Coaching can take place in person, on the phone or via the internet. You too can be a Myeloma Coach. (register to become a Myeloma Coach or find a Coach on www.myelomacoach.org)

You do not have to take this journey alone. There are many of us who are here to help if you just ask. That is what the Myeloma Coach program is all about.