The Boca Raton Multiple Myeloma Support Group is observing Multiple Myeloma Awareness Month in March.
“Members of the support group have been instrumental in bringing community awareness to this disease, and have worked with local city governments to have March declared Myeloma Awareness Month in Boca Raton, Delray Beach, Boynton Beach and Ocean Ridge,” among others, Dawn Toimil, co-leader with Gail Young, said in an email.
More than 250 people were expected at the group’s recent, two-day International Myeloma Foundation’s Patient & Family Seminar at the Boca Raton Marriott.
The Boca Raton Multiple Myeloma Support Group meets from 6:30 to 8:30 p.m. the first Monday of the month at the James Rutherford Community Center in Patch Reef Park, 2000 Yamato Road.
“Our group is open to those who are affected, as well as their families, friends and anyone interested in learning or sharing information concerning multiple myeloma,” Toimil said. “Our group membership has grown to over 70 patients/caregivers.”
Dr. Warren S. Brenner speaks to the support group twice a year, after each major oncology conference.
“I bring them up to date on new information and currently available therapies,” he said.
Myeloma is a cancer of cells in the bone marrow that affects the immune system and can damage bone. Myeloma affects more than 100,000 people in the United States, with an estimated 20,000 new cases diagnosed each year, Toimil said in a statement.
“Veteran newsman Tom Brokaw recently shared news that he is battling multiple myeloma,” she added.
Dr. Brenner recently talked about multiple myeloma.
How much do you see multiple myeloma in your practice?
I see a lot of myeloma, about 40 active patients. Most doctors may have five or 10. Our practice is geared toward sub-specializing, so these patients will be referred to me. I have a specialized interest in focusing on myeloma.
Is this often misdiagnosed?
Physicians are more aware of it. Patients may be seen by a kidney specialist first. As part of the workup, the kidney specialists would want to rule out it’s not multiple myeloma.
How important is getting treatment as soon as the patient is diagnosed?
Yes, to really prevent further organ damage, but some are more urgent than others. Someone who presents with kidney failure, we initiate treatment immediately. Someone who presents with aggressive anemia we have time to do the appropriate workup and arrange for some of the prescriptions, which are expensive and may take a few weeks to get.
What is the standard of care for treatment?
There is no one standard of care. You have to divide patients into two broad categories: Those who are candidates for a bone marrow transplant and those who are not.
What is that based on?
Based on age, generally not over the age of 70, but that is not a rule. If they have a comorbidity, such as a bad heart function or lung function not related to multiple myeloma, they may not be a candidate even if they’re 45. Myeloma is a disease of aging. The median age is 71.
Does the patient have to look for a donor?
The bone marrow is derived by the patient themselves by collecting stem cells from their blood. That’s why we give patients therapy, to get the myeloma as much in remission [as possible]. We treat myeloma first, and then potentially move forward with a transplant by collecting stem cells from the blood and try to minimize the number of myeloma cells that may be present.
Are there any new treatments on the horizon?
Multiple treatments. Most will be available by clinical trials at Clinicaltrials.gov.