Diane Kennedy 

Support Systems and Multidisciplinary Treatment Approach

City of Hope offers a comprehensive, multidisciplinary approach to support patients through their myeloma journey. Beyond the core medical team, patients benefit from pharmacists who provide detailed medication guidance and social workers who offer emotional and practical support to both patients and their families. Palliative care specialists are also available to help manage symptoms and improve quality of life throughout treatment. Additionally, consultants such as cardiologists and infectious disease experts collaborate with the primary team to address specific health concerns, ensuring that complex issues like blood pressure control or infections are expertly managed. This team-based approach allows patients to receive coordinated care tailored to their unique needs.

One example of multidisciplinary care in action is managing side effects of specific myeloma drugs. For instance, some treatments can cause high blood pressure, requiring collaboration with cardiology to safely continue therapy. Similarly, neuropathy—nerve pain or numbness—can be a significant challenge for many patients. Palliative care and integrative medicine at City of Hope offer complementary therapies like acupuncture, Tai Chi, and mindfulness practices to help relieve these symptoms. These approaches work alongside conventional treatments to address both the physical and emotional aspects of living with myeloma, providing a holistic model of care.

Support groups play a vital role in helping patients and caregivers cope over the long term. Many find that emotional and social challenges become more pronounced years into their treatment, as they begin to process the impact of their diagnosis. These groups foster connection and encouragement by bringing together newly diagnosed patients and those who have been living with myeloma for many years. Sharing experiences creates a hopeful community where people can learn from one another and find strength in knowing they are not alone. This combination of expert medical care and strong psychosocial support is a hallmark of the patient experience at City of Hope.

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Panelists discuss City of Hope’s multidisciplinary approach, highlighting pharmacists providing medication guidance, social workers offering emotional support, and palliative care specialists managing symptoms, while consultants like cardiologists and infectious disease experts address specific health issues to ensure coordinated, personalized care; complementary therapies such as acupuncture and mindfulness help manage side effects like neuropathy, and support groups foster community and resilience among patients and caregivers throughout their myeloma journey.

Patient Perspective: Adverse Events and Tolerability

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 healthcare team allowed for adjustments, including reducing and eventually removing the dexamethasone. This brought significant relief. Other side effects, such as fatigue, were mild and predictable, enabling a rhythm of resting after treatment days but otherwise maintaining regular activities.

Managing side 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 one month off work was needed during the first two years, highlighting the treatment’s relative tolerability and the ability to maintain quality of life during therapy.

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

Adverse Event Management and Treatment Response Assessment

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 side 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 side 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 side 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 four 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 (MRD) 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.

Panelists discuss how patient portal use improves communication by allowing patients to report side 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.

Patient Perspective: Navigating Multiple Myeloma Treatment

When first confronted with a multiple myeloma diagnosis, patients are often overwhelmed by both the emotional impact and the volume of medical information. In this case, the patients quickly went into "warrior mode," conducting extensive online research to better understand treatment options and terminology. Initially, they expected a standard three-drug regimen followed by stem cell transplant and maintenance therapy. However, after meeting with their physician, they learned about a more cutting-edge four-drug regimen that was still emerging in the field at the time. The treatment included daratumumab (an immunotherapy), lenalidomide (an immunomodulatory pill), bortezomib (a proteasome inhibitor injection), and dexamethasone (a steroid), followed by stem cell transplant and long-term maintenance.

This approach, referred to as a "package," was based on research that later formed the foundation of the landmark Perseus Trial. The patients appreciated that their physician was ahead of the curve, offering access to the most advanced therapies years before they became mainstream. Their treatment decisions factored in not only the specifics of the disease—such as risk level and genetic features—but also their family circumstances, personal goals, and the desire to maintain quality of life. This collaborative, personalized planning helped build confidence in the treatment process and contributed to a deep, durable remission lasting more than seven years.

The patients also emphasized the importance of clear communication and shared decision-making. At a time when medical terminology felt foreign and the emotional weight of an “incurable” diagnosis was heavy, they valued how their care team took the time to explain everything in writing, considered their family responsibilities, and helped restore a sense of control. Rather than being told what to do, they were invited into the decision-making process, which helped ease the anxiety and uncertainty of the early days following diagnosis.

Panelists discuss how patients newly diagnosed with multiple myeloma often face emotional and informational overload, but collaborative, personalized care—including early access to cutting-edge four-drug regimens, clear communication, and shared decision-making—can empower them, ease anxiety, and support long-term remission and quality of life.

Diane Kennedy

Support Systems and Multidisciplinary Treatment Approach

Patient Perspective: Adverse Events and Tolerability

Adverse Event Management and Treatment Response Assessment

Patient Perspective: Navigating Multiple Myeloma Treatment

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