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Published on May 21, 2021
Expert Shares Recommended Reading With Myeloma Patients
The following article includes highlights from the Myeloma Connections: Dinners with the Docs series.
When someone is diagnosed with multiple myeloma, they are suddenly thrown into an unfamiliar new world — a world filled with drug names, medical jargon, and a team of healthcare providers who specialize in treating rare blood cancers. While trying to make sense of all of that, the patient is also worried about their future, a future that now looks very different than it did before they heard the words, “You have cancer.”
With the shock that accompanies a cancer diagnosis, it can be tempting for patients to sit back and let the oncology/hematology team map their course for treatment. After all, they are the experts! But those experts want patients to know that it is not only okay to ask questions — it is imperative.
Education and self-advocacy have been recurring themes 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. In a recent event hosted in the Pacific Northwest, Josh Epworth, an Advanced Registered Nurse Practitioner (ARNP) at Seattle Cancer Care Alliance (SCCA), shared a message for patients.
“I would strongly encourage all of the people who are listening here to recognize that you have a right to good care for your myeloma,” Epworth said. “But you also have the right to a conversation about the status of your disease, time to talk about what these numbers mean. You can lead a good quality of life while receiving these treatments, and all that needs to be done is that you communicate with your team, ask for things, and never say, ‘I'm so sorry to bug you with this, but…’ You have that right. That is what we do here, that is our job, and that is our passion to make sure that everybody comes through this as best as they can.”
Epworth encourages patients to prepare for appointments by reading about multiple myeloma and familiarizing themselves with the latest available therapies. He shared his recommended reading list with Patient Power, which includes academic and patient-centered articles about treatments, managing side effects, COVID-19, and more.
“In treating myeloma, there is not one perfect treatment,” Epworth said. “There are a variety of options, and a patient needs to be able to determine which one is right for them. Part of making this decision is knowing your options. Your care team is a great resource, but there are also many great articles that you can read to prepare yourself for your clinical meetings.”
Epworth added, “When picking reading materials, choose resources that come from credible sources. Medical journals can be very informative but also heavy. There are many groups that review these journals and distill the information into clear summaries. As time goes by, you will gain a greater understanding of this disease and gain confidence. Read, don't be afraid to ask questions and recognize you are part of your care team.”
Recommended Reading List from a Myeloma Expert
Understanding Multiple Myeloma
Multiple myeloma: Diagnosis and treatment. (National Institutes of Health)
Myeloma today: Disease definitions and treatment advances. (National Institutes of Health)
What is multiple myeloma? (International Myeloma Foundation)
Understanding multiple myeloma (Multiple Myeloma Research Foundation)
Plasma cell neoplasms (Including multiple myeloma) (National Institutes of Health)
Coronavirus and Multiple Myeloma
Clinical features associated with COVID-19 outcome in multiple myeloma from the International Myeloma Society data set (Blood)
Coronavirus: What people with cancer should know. (National Cancer Institute)
COVID-19 Vaccine and Multiple Myeloma
ASH-ASTCT COVID-19 vaccination for HCT and CAR T cell recipients: Frequently asked questions. (American Society of Hematology)
Response to first vaccination against SARS-CoV-2 in patients with multiple myeloma (The Lancet)
COVID-19 vaccine spurs immune response in majority of patients with MM (Multiple Myeloma Today)
Multiple myeloma, 2020 update on diagnosis, risk-stratification, and management (Wiley Online Library)
Newly diagnosed Myeloma in 2020. (ASCO Educational Book)
Optimal strategies for treatment of multiple myeloma in newly diagnosed patients (Targeted Oncology)
Support for this series has been provided by Karyopharm Therapeutics. Patient Power maintains complete editorial control and is solely responsible for program content.
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