The Myeloma Survival Guide: Essential Advice for Patients and Their Loved Ones

TON - September/October 2014 Vol 7 No 5 - Hematologic Cancers
Beth Faiman, PhD, APRN-BC, AOCN
Editor in Chief

Imagine you’ve been feeling more tired lately, but you think, who isn’t? You work long hours at the office and at home. The fatigue becomes worse. After a battery of blood tests, the practitioner tells you the results. The anemia is caused by excess protein in the blood and has damaged your bones. The diagnosis is multiple myeloma (MM). What is multiple myeloma? What does this diagnosis mean to me and my family?

Multiple myeloma is a cancer of the bone marrow plasma cells. Malignant plasma cells secrete clones of normal immunoglobulins that produce cytokines and attack the organs. Hallmarks of the cancer include hypercalcemia, anemia, renal insufficiency, and bone lesions.1 In 2014, approximately 24,000 patients will receive an MM diagnosis. As of 2011, an estimated 83,000 patients in the United States were living with this cancer.2 Although MM is largely incurable, overall survival has dramatically increased to 8 to 10 years, owing to the advent of newer therapies.3,4 There is currently no standard of care for treatment of MM at diagnosis; thus, clinical trial participation is encouraged.

Given the chronic nature of MM, upon diagnosis patients and their caregivers immediately become concerned about the short- and long-term physical, financial, social, and societal issues. Informed and proactive patients will strive to learn about the best treatment options, adverse effect management strategies, and what questions to ask. Support groups, patient care organizations, and hospitals themselves provide resources. But until now, there has been no single source of information written by someone with firsthand knowledge of living with this cancer.

To fill this gap, a patient and caregiver have offered their unique perspectives by cowriting The Myeloma Survival Guide, in concert with Their Best Advice Foundation.5 Their intimate knowledge of living with cancer allowed the authors to highlight the common health and psychosocial concerns the patient experiences as well as the resources to address them.

I had the opportunity to read the book, which is chock-full of resources to deal with common issues and answers frequently asked questions. The reader navigates the “forest full of trees” that is living with MM and experiences “new normal” ways of life. Key areas highlighted include the aforementioned financial, social, and psychological issues, and all are appropriately addressed. This book is a practical guide for all patients and caregivers as they steer through the rapidly changing landscape of the myeloma diagnosis and treatment process.

The Myeloma Survival Guide is pragmatic and relevant. As nurses, APNs, and PAs, we strive to understand what the patient and family are going through. But only those who have dealt firsthand with the diagnosis can truly understand what it means to live with this disease. I highly recommend this book for patients and caregivers who would like to learn more about MM and the resources available. Feel free to go to www.tbafoundation.org and share this information with your patients!

References

  1. Palumbo A, Rajkumar SV, San Miguel JF, et al. International Myeloma Working Group consensus statement for the management, treatment, and supportive care of patients with myeloma not eligible for standard autologous stem-cell transplantation. J Clin Oncol. 2014;32(6):587-600.
  2. Howlander N, Noone AM, Krapcho M, et al (eds). SEER Cancer Statistics Review (CSR) 1975-2011. http://seer.cancer.gov/csr/1975_2011/. Updated August 27, 2014. Accessed August 28, 2014.
  3. Kurtin S, Faiman B. The changing landscape of multiple myeloma: implications for oncology nurses. Clin J Oncol Nurs. 2013;17(suppl):7-11.
  4. Kumar SK, Dispenzieri A, Lacy MQ, et al. Continued improvement in survival in multiple myeloma: changes in early mortality and outcomes in older patients. Leukemia. 2014;28(5):1122-1128.
  5. Tamkin J, Visel D. The Myeloma Survival Guide. New York, NY: Demos Health; 2014.
Related Items
From the Editor - TON July 2018
Beth Faiman, PhD, APRN-BC, AOCN
TON - July 2018, Vol 11, No 3 published on July 25, 2018 in From the Editors
Palliative Care Use Dismal Among Patients with Hematologic Malignancies
TON - March 2018, Vol 11, No 1 published on March 9, 2018 in Conference Correspondent, ASH, Palliative Care, Hematologic Cancers
From The Editor - TON March 2018
Beth Faiman, PhD, APRN-BC, AOCN
TON - March 2018, Vol 11, No 1 published on March 9, 2018 in From the Editors
From the Editor
Beth Faiman, PhD, APRN-BC, AOCN
TON - November 2017, Vol 10, No 6 published on November 27, 2017 in From the Editors
From the Editor
Beth Faiman, PhD, APRN-BC, AOCN
TON - September 2017, Vol 10, No 5 published on September 10, 2017 in Cancer Center Profile
From the Editor
Beth Faiman, PhD, APRN-BC, AOCN
TON - July 2017, Vol 10, No 4 published on July 6, 2017 in From the Editors
Staying Abreast of New Treatments
Beth Faiman, PhD, APRN-BC, AOCN
Conference Correspondent  published on April 18, 2017 in ASH 2016 - Multiple Myeloma, Hematologic Cancers, Conference Correspondent
Managing Patients with Multiple Myeloma
Beth Faiman, PhD, APRN-BC, AOCN
Conference Correspondent  published on April 18, 2017 in ASH 2016 - Multiple Myeloma, Hematologic Cancers, Conference Correspondent
Perceptions of Daratumumab Therapy
Beth Faiman, PhD, APRN-BC, AOCN
Conference Correspondent  published on April 18, 2017 in ASH 2016 - Multiple Myeloma, Hematologic Cancers, Conference Correspondent
Starting a Patient on Daratumumab
Beth Faiman, PhD, APRN-BC, AOCN
Conference Correspondent  published on April 18, 2017 in ASH 2016 - Multiple Myeloma, Hematologic Cancers, Conference Correspondent
Last modified: July 28, 2015