"If I knew then what I know now, I would have done things differently."
A myeloma patient, who wishes to remain anonymous, met with me on a sunny afternoon to share her story. Hers, similar to many of our own, was filled with many successes and some regrets. There was one regret in particular that she wanted to share with others.
"I noticed my light chain curves were trending upwards," she explained, "that was the earliest indication a relapse was happening."
She talked to her treating doctor, but he didn't seem to be concerned.
"They wanted to watch and wait. I went along with his suggestion." Another set of labs went by, with the trends still slightly increasing. Still, the doctor encouraged her to watch and wait. When it was time to check on the status of her myeloma again, things had progressed quickly.
A new myeloma regimen was prescribed, and with it came difficult side effects. Her life as an active myeloma patient began again.
If she could do it over again?
"I would request a bone marrow biopsy right away," she lamented, "and asked all of my consulting myeloma specialists what their opinion was regarding my treatment."
Before the relapse, she had a stable, MGUS-like disease, and her medications didn't affect her daily life. Though no one can go back and change time, she wonders if a bone marrow biopsy (or other scans) would have given the physicians a better picture of her disease activity, and slight medication adjustments could have prevented a full-blown relapse.
Commonly in myeloma, the need to be proactive falls on the patient. The disease is complicated and unique, and many oncologists can't keep up with the research within this complex disease field.
Consider the following in your own myeloma journey:
- Are you tracking your myeloma labs to notice slight changes in lab value trends?
- Do you have more than one physician consulting you?
- Is at least one of these physicians a myeloma specialist?
- Have you talked about a possible relapse with your healthcare team?
- Do you have a plan for your next myeloma treatments if you do relapse?
While it can be overwhelming to feel all the proactivity lands on your plate, HealthTree provides resources that can help you be proactive in your own care:
- Tracking Your Myeloma Labs: use HealthTree CureHub to track your disease trends and be notified of personalized treatment recommendations
- Find a Myeloma Specialist in Your Area: Myeloma Specialist Directory
- HealthTree University Courses: Relapsed/Refractory Myeloma Treatment Education
When I asked our myeloma patient what mantras or phrases she was living by to help her along the myeloma journey, she responded:
- When we get a myeloma cure, I'm going to body surf.
- I choose to take care of myself.
- I am going to get well.
She lives by these words, and even though her relapse is a disappointing point within her myeloma journey, she's hopeful about the amazing treatments available to her now and in the near future.
about the author
Audrey is the Editor for the HealthTree Foundation for Multiple Myeloma. She originally joined the HealthTree Foundation in 2020 as the Myeloma Community Program Director. While not knowing much about myeloma initially, she worked hard to educate herself, empathize and learn from others' experiences. She loves this job. Audrey is passionate about serving others, loves learning, and enjoys iced chais from Dutch Bros. She also loves spending time with her supportive husband and energetic three-year-old.