When Josephine Diagonale’s doctor told her in 2007 that she had myeloma, tears of disbelief immediately welled up in her eyes. After all, myeloma is a rare cancer of the plasma cells in bone marrow that affects fewer than six Americans in 100,000 each year.
Diagonale was even more incredulous when she learned that the average life expectancy at that time was 4-5 years.
“I refused to accept that timeline. I knew I had more living to do,” Diagonale said.
Myeloma affects the blood and bone. Myeloma cells damage the bone’s ability to repair itself, leading to soft spots that appear as holes on an xray. Patients may develop anemia, increased risk of infection or bruising, or kidney failure.
People are often asymptomatic in the early stages of myeloma, and some of the disease’s characteristics imitate other ailments. For this reason, myeloma may be diagnosed incidentally through tests for other conditions.
A spiritual woman whose personal philosophy centers on the interplay of mind, body, and spirit, Diagonale turned inward after her diagnosis. She focused all her energies on healing, deepening her regular meditation practices.
She also scoured the internet for everything she could find on myeloma, which at the time was a hot topic among pharmaceutical companies and cancer research centers.
Although myeloma was once one of the most-feared diagnoses a patient could have, over the last ten years, scientific developments and newly-approved drugs have made the conversation more hopeful.
Delaware Governor Jack Markell recently signed a proclamation designating March as Myeloma Awareness Month. Sponsored by the International Myeloma Foundation, events during March seek to educate the public about the disease.
Through consultation with Rishi Sawhney, MD, of Bayhealth Hematology/Oncology Associates, Diagonale eventually embarked on a treatment regimen including an oral medication. After four years, her cancer became resistant, so Dr. Sawhney transitioned her to a different therapy.
This experience is common. Treatment for myeloma often involves doctors trying combinations of drugs when one stops working. Many patients pursue stem cell transplants, which may enhance the effects of drugs.
Typically a private person, Diagonale decided in 2010 that being open about her disease would not only benefit herself but also create connections with other myeloma patients in her community. She felt that an organized support network at the local level could provide an important source of strength for myeloma patients and their caregivers.
In 2011, born of a collaboration between Diagonale and the International Myeloma Foundation, the Delmarva Multiple Myeloma Support & Networking Group held its inaugural meeting. Now in its third year, the group regularly welcomes 12-14 attendees for monthly meetings where guest speakers present on topics as diverse as coping with loss, ongoing clinical trials, and muscle strengthening.
By May 2012, Diagonale’s blood work revealed that her plasma and blood protein levels, previously elevated by myeloma, had returned to the normal range. While she is grateful and relieved to be in remission, her journey with myeloma continues.
“We can still be creative and productive members of our households and communities,” Diagonale commented. “Medical research, new therapies, and education, along with support from friends and family, will change the outlook for myeloma patients.”
At the 2012 Annual Meeting of the American Society of Hematology, over 700 scientific papers were presented on myeloma. Scientists and medical experts believe that evolving therapies will drastically increase the life expectancy for myeloma patients.
For more information about multiple myeloma, visit www.myeloma.org. The Delmarva Multiple Myeloma Support & Networking Group meets the third Saturday of each month in the Eden Hill Medical Center. To learn more, call 302-233-8229.