Join us and celebrate Black History Month with a patient spotlight series! Tune in each week and get to know patients from our myeloma community as they share their stories with us.
This week meet Patricia Phillips Roberts. Patricia shares with us her diagnosis story and the important role that faith has had throughout her myeloma journey. Click the video below and listen to her story.
Patricia has loved singing since she was two years old and the only time she had to stop was when she was on dexamethasone during her myeloma treatment. But the song she has in her heart about her faith in God has helped her on a 17 year journey with multiple myeloma.
In 2003 Patricia started experiencing pain when she exercised. Thinking it could be because she wasn't warming up properly, she ignored the symptoms. She had more pain after being in a car accident during that time.
In 2004 she knew something was truly wrong when she was attending a family reunion and went to jump rope with the kids. Landing, she felt a pop and then excrutiating pain. Her primary care doctor performed an MRI and found a compression fracture that looked old. Not knowing what else was going on, she was prescribed water therapy for 8 months.
In June of 2005, she had additional imaging performed and was diagnosed with monoclonal gammopathy of undetermined significance (MGUS). An official diagnosis of multiple myeloma was later given and her local doctor referred her to UCLA where her first hip biopsy wasn't successful, but the second sternum biopsy showed a kappa-based myeloma with 50% plasma cells.
In 2005, treatment options were very limited. She was given 10 dexamethasone tablets daily, four days a week for her myeloma treatment. The dex would make her active for 4 days with a complete crash when she stopped. (To put this into perspective, this is likely a weekly 40 mg dose of dex, which is an astounding amount of dex per week. It's astounding that she was mentally functional. Mike Katz, a myeloma patient advocate helped clinicians reduce that dose significantly after decades of high use like that.)
Her myeloma specialist coordinated care with her local oncologist. Patricia had an autologous stem cell transplant and from February 2006 until 2010 was in complete remission.
When her doctor told her the myeloma had returned in 2010, she cried harder than she had at the initial diagnosis. She started taking dex again, then Velcade but had to stop because she developed neuropathy. She moved to Revlimid, went back to Velcade and in 2016 tried pomalidomide. In 2020 the pom stopped working and she went back to Velcade. In 2022 she started a Darzalex and Kyprolis combination.
When she was diagnosed, Patricia was told that shse had 3-5 years to live and that she had probably had the disease for at least 2 years. Seventeen years later, she is alive and well in spite of multiple myeloma. She credits her family and God for helping sustain her during this long-term trial.
Patricia wrote a book called Song of a Survivor in 2014 to share her experience with multiple myeloma.
If you would like to share your story like Patricia, please send an email to firstname.lastname@example.org.
about the author
Marsha Calloway-Campbell - Marsha is a caregiver to her husband who has multiple myeloma. Although a lawyer and consultant, Marsha finds time to work with the myeloma community all while enjoying time with her husband, 3 adult daughters and young grandson. She’s passionate about helping and empowering others.