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Cancer Survivor Now Leads Multiple Myeloma Support Group

Diedra Jones and Cynthia RobinsonUAB patient Deidra Jones (left) and her sister Cynthia Robinson. Jones, whose cancer is in remission, is helping others by leading the Central Alabama Multiple Myeloma Support Group.

 

Deidra Jones was diagnosed in 2015 with multiple myeloma, the second most common blood cancer. She was treated by UAB Medicine hematologist/oncologist Luciano J. Costa, MD, PhD, who is part of the Blood and Marrow Transplantation and Cell Therapy Program. Today her cancer is in remission, and Jones is helping others by leading a multiple myeloma support group.

March is Myeloma Action Month, which is designed to raise public awareness and educate patients, their family, and caregivers about this type of cancer. In the interview below, Jones discusses her journey of survivorship and leadership and what led her to take the reins of the Central Alabama Multiple Myeloma Support Group. Founded in 2013, the group offers an informal setting for connecting with others, sharing experiences, and learning to navigate both the practical and emotional sides of cancer.

Tell us a few details about yourself.
I am a native of Birmingham, Alabama. I have a daughter who is a psychiatrist at the University of Maryland. I have two grandchildren, ages 3 and 7. Along with surviving myeloma, I am also a cancer survivor of a meningioma (tumor) in the left hemisphere of the brain, which was diagnosed in 1993.

When did you first begin experiencing multiple myeloma symptoms?
That was in 2015, when I was working at St. Vincent’s East on the Geriatric Unit. The charge nurse and my co-workers noticed that I was very short with the workers and the patients, and I was acting very fatigued. Also, I was having problems with sleeping and eating, my breathing was affected, and I was having chest pains. I thought I was having a heart attack.

After several visits to the emergency department, I followed up with my internal medicine physician, but I was still experiencing the same symptoms and getting no relief. I thought maybe the problem was with my circulation, so I saw an orthopaedic physician. He and my internal medicine doctor referred me to UAB Urgent Care.

From there I was referred to UAB Hospital-Highlands, and when I went to the Emergency Department, an EKG indicated that there were some irregularities with my heart. The next morning I was diagnosed with congestive heart failure. Upon discharge, I was scheduled for a bone marrow biopsy at UAB, and it was then that I was diagnosed with multiple myeloma.

Tell us about your diagnosis and treatment experience.
When I was diagnosed with cancer, I didn’t know what to expect. But the staff in Dr. Costa’s office is the best. They made it possible for my family and me to contact them during or after hours at his office, for whatever assistance I may need. Even when there were times that I needed to be admitted, they made it possible for me to have a smooth transition to the hospital. When I was in the Infusion Clinic, the nurses explained the procedure in detail to us and made sure we understood what was going to occur throughout treatment.

I received this treatment until November 2016. My immune system began to reject the chemo that I was receiving, and I went into remission. In December 2016, Dr. Costa was coordinating a clinical trial that he thought that I would be a good candidate for. I was enrolled in the study in 2017, and within approximately six weeks I went into remission and have been in remission ever since. I was receiving this regimen until June 2018, and when I received my last treatment, I rung the bell to signal the end of my chemotherapy (a tradition at UAB Medicine).

How did you become the leader of a myeloma support group?
I have been the leader of the Central Alabama Multiple Myeloma Support Group for the past two years, but it was actually started at a church about five years ago by Eric Huckabee, who is a myeloma survivor. As the group expanded, we moved our meetings to Landry’s Seafood House, where we meet on the second Saturday of each month. The inspiration for the group was to give people a place to discuss any issues that they have with their condition and also an opportunity for caregivers to share their concerns. I took over the support group because Eric began having difficulty attending each month and the group was going to disband, but I told him I wanted to lead if it would keep us together.

What has the experience of leading the support group meant to you?
This group is like a family. When one of our members doesn’t attend a meeting, or if they are going through something difficult or about to have a procedure, they always know they can count on us to be there for them. Taking on this group has been an opportunity to learn a lot about myeloma and to meet distinguished individuals who are experienced with the disease. Doctors and pharmaceutical companies and representatives from the International Myeloma Foundation have attended meetings to inform us about new treatments and clinical trials. I also traveled to Wisconsin to attend my first patient and caregiver seminar. I learned so much that the group and I decided to hold one here in Birmingham in October of last year. I am in the process of preparing another one for next fall.

Do you have any advice for other people with multiple myeloma?
Just know that it’s not a death sentence. Don’t focus on what your life would have been like, and don’t stop living because you have been diagnosed with cancer, because you can live with it. Continue to do what the doctors suggest, take your medications, and do the chemotherapy treatments. I have a saying: “I have cancer, but cancer doesn’t have me.” In other words, don’t let cancer control your life.

Click here to learn more about the Central Alabama Multiple Myeloma Support Group. Click here to learn more about multiple myeloma care and the resources available at the O'Neal Comprehensive Cancer Center at UAB.