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Patients and Doctors Manage Multiple Myeloma Side Effects Together

Patients and Doctors Manage Multiple Myeloma Side Effects Together
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Published on April 30, 2021

Doctor-Patient Communication Key to Managing Side Effects

Reina Weiner was diagnosed with multiple myeloma in 2012. Drawing from what she learned in her career as an oncology pharmaceutical representative and her parents’ advice to always ask for what she needs, Weiner continues to live life to the fullest nearly a decade after her diagnosis. She’s written a book about effective patient-doctor communication and empowered others to become active participants in their own health care. But one of her biggest lessons was figuring out how to manage her side effects so she can ride on the back of her husband’s motorcycle on sunny days.

The side effects of myeloma treatment have been a recurring theme during Patient Power’s Dinner with the Docs series, where patients and experts discuss the latest myeloma news while sharing a virtual dinner via Zoom. Weiner led the March 8 discussion, which included Jonathan Kaufman, MD, a myeloma expert from the Winship Cancer Institute at Emory University. Like Weiner, Dr. Kaufman champions the importance of patients telling their doctors what they need and how they are feeling.

“I tell patients that it's very important that I know what the side effects are because there are some side effects that we can manage through, and there are some side effects that if we ignore will just get worse and become debilitating — and even become potentially life-threatening,” Dr. Kaufman said.

“I can know if somebody is responding to treatment for their myeloma because I see their numbers go down. But the only way I know if a patient is having side effects is if they tell me,” he added.

Side Effects of Multiple Myeloma Treatment

Multiple myeloma side effects vary by treatment and individual. The Multiple Myeloma Research Foundation lists blood clots, peripheral neuropathy, gastrointestinal problems like diarrhea, and decreased blood counts as four common side effects. Another issue that patients frequently report is fatigue.

“Fatigue, I think, is really common for all of us in the myeloma community,” Weiner said. “I don't know if it's the disease or the treatment or a combination of both, but I have not talked to any myeloma patient like myself who says, ‘I have so much energy.’ It's not the way it is.”

Patients can manage some side effects at home, by napping when they are tired, for example, or taking an over-the-counter drug like loperamide (Imodium) for diarrhea, if that is something their doctor recommends. Other side effects can be mitigated with the help of a specialist.

Nisha Joseph, MD, another myeloma expert from the Winship Cancer Institute at Emory University, shared her approach to managing peripheral neuropathy during the Dinner with the Docs event led by Weiner.

“Dose reductions are quite common [with peripheral neuropathy],” she said. “We monitor patients very closely, and we have drugs that we use to help control some of those symptoms, to make that neuropathy less painful for the patient. Things like gabapentin, [pregabalin] Lyrica, and [duloxetine] Cymbalta, we use often. And then things like physical therapy, making sure that you're continuing to walk and move and stimulate those nerves, can really help as well.”

By employing medications, dose-reduction strategies, at-home therapies, and other approaches, your doctor can help you mitigate the side effects of your multiple myeloma treatment. However, they will only know you need help if you tell them. Take detailed notes about what you are feeling and when, and then use those notes to have a candid conversation with your doctor.

Managing side effects during treatment is key to maintaining your quality of life after a cancer diagnosis. As Weiner writes on her website, advocate for yourself, trust yourself, and live the best life possible.

For more information about Dinner with the Docs or to register for an upcoming event, visit Patient Power Events or email myeloma@patientpower.info.

~Suzanne Mooney


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