Panelists discuss how patient portal use improves communication by allowing patients to report adverse effects with photos for accurate evaluation, and how treatment effectiveness is monitored through carefully timed blood tests, imaging, and bone marrow biopsies—including minimal residual disease testing—to balance thorough assessment with minimizing patient discomfort.
With the advent of the patient portal, communication between patients, families, and the care team has become much easier and more efficient. When patients experience adverse effects, they often send messages describing their symptoms. The care team reviews these messages, then follows up with a phone call to clarify details and identify which medication might be causing the problem. For example, a common adverse effect of certain treatments is a skin rash. Patients are asked to send photos via the portal, allowing the care team to assess the severity and characteristics of the rash more accurately. This helps differentiate between treatment-related rashes and other skin issues, enabling tailored advice on managing adverse effects while keeping patients on their essential therapies. Patients are also educated on when to use the triage line for urgent concerns, ensuring timely care.
Monitoring treatment effectiveness is a critical part of care and relies heavily on blood tests. Myeloma proteins in the bloodstream have different half-lives—some, like IgG, may remain for about a month, while others, such as kappa or lambda light chains, clear within hours. This means that testing too soon after treatment may not provide an accurate picture of response. Generally, the care team waits around 4 weeks before evaluating treatment effects to allow enough time for changes to show. In addition to blood tests, imaging studies such as PET scans and bone scans are used intermittently to assess bone involvement, but these are done less frequently due to cost and radiation exposure. Bone marrow biopsies are also performed but only at key points since they are invasive and uncomfortable for patients.
Advanced testing like minimal residual disease analysis, which detects very low levels of cancer cells, requires bone marrow samples and helps guide long-term treatment decisions. Because no single test perfectly captures disease status, the care team carefully balances how often and which tests to use, aiming to monitor progress closely while minimizing patient discomfort and disruption. This thoughtful approach allows for personalized care, combining thorough disease assessment with attention to quality of life.
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