Patient Perspective: Adverse Events and Tolerability

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Panelists share that despite initial emotional challenges, multiple myeloma treatment with targeted combination therapies was generally well tolerated, with manageable adverse effects—especially after adjusting dexamethasone—and strong health care team support, enabling patients to maintain quality of life and continue regular activities throughout therapy.

Soon after diagnosis, treatment began quickly, with the first infusion happening on a birthday. Despite the emotional weight of that day and uncertainty about how the drugs would be tolerated, the treatment proved much more manageable than expected. Contrary to the common perception of cancer therapy being brutal, the targeted combination therapies were generally quite tolerable.

The medication that was most challenging was dexamethasone, a steroid that caused irritability, insomnia, and emotional swings. Loved ones and coworkers even joked about how “dex days” brought out a more volatile side. While these effects were difficult, open communication with the health care team allowed for adjustments, including reducing and eventually removing the dexamethasone. This brought significant relief. Other adverse effects, such as fatigue, were mild and predictable, enabling a rhythm of resting after treatment days but otherwise maintaining regular activities.

Managing adverse effects was a team effort, with prompt access to doctors and nurse practitioners. There was comfort in being able to call the clinic when issues arose, even during holiday weekends. Despite the intense treatment—including induction, consolidation, and stem cell transplant—only 1 month off work was needed during the first 2 years, highlighting the treatment’s relative tolerability and the ability to maintain quality of life during therapy.

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