How to Make Smarter Decisions at Every Step of Your Myeloma Journey

Five takeaways from the MMRF’s webinar with co-founder and patient advocate Kathy Giusti.

►

A myeloma diagnosis can mean stepping into a system that’s overwhelming, fast-moving, and full of difficult decisions. In a recent webinar, MMRF Co-Founder Kathy Giusti shared her practical strategies for making confident decisions, preparing for key milestones, and more.

Drawing on nearly 30 years of experience as both a cancer survivor and patient advocate, Giusti offered a candid perspective on what it takes not just to survive, but to live well with myeloma. Here are five key insights from the conversation.

1. Take an active role in your treatment

With more than 15 FDA-approved treatments for myeloma, patients have more options than ever before. But that also means that they increasingly need to be active participants in their care.

“The doctor is now saying to you, ‘Here are your options. What do you want to do?’” Giusti said. “You need to understand your options.”

Giusti emphasized the importance of preparing for appointments, asking clear questions, and making your priorities known. Proactively bring up things like your work schedule, caregiving support, and how far you have to travel so your doctor can match you to treatments that fit your life.

“We’ve always had these challenges as patients, but with more information and more treatments, you’ve got to do your research and optimize your own journey,” she said.

2. Prepare before you need to

One of Giusti’s biggest pieces of advice was to plan ahead whenever possible. Ask your doctor questions about the next phases of treatment. If you’ve been diagnosed with smoldering myeloma, like Giusti was, use that as an opportunity to learn about myeloma and outline potential next steps. Having a plan in place can reduce anxiety and help you feel more in control when circumstances change.

“You make the best decisions when you’re not in a panic,” she said.

3. Get a second opinion

“I’m a huge fan of second opinions,” Giusti said, because treatment for myeloma is rapidly evolving. She encourages every patient to seek multiple perspectives—especially from oncologists at leading cancer centers, who will often do virtual consultations.

Far from being seen as a challenge to a physician, second opinions are now a routine part of care.

“Doctors don’t take this personally,” Giusti said.

4. Speak up about your quality of life

Treatment isn’t just about how effective it is—it’s also about how you feel while on it. That’s why Giusti recommends being “brutally honest” about any side effects you’re experiencing and making sure you understand how you might feel on every drug.

Ask your doctor what side effects might be temporary and what you might experience in the longer term. Bring a caregiver with you to your appointments to be a second set of ears and to raise side effects they’ve noticed.

“I know we don’t want to be a burden. We don’t want to complain. We want our doctors to like us,” Giusti said. “But in myeloma, we have a lot of good options.”

Doctors can make medication adjustments, prescribe medication to alleviate certain side effects, or even consider temporary pauses in treatment.

“It doesn’t have to be all or nothing,” she said.

5. Remember what matters most

Reflecting on her own journey, Giusti shared one of her most personal lessons: Survival alone isn’t enough.

“For a long time, I was definitely staying alive, but I wasn’t living,” she said.

In hindsight, she realized how easy it is to become consumed by treatment—and how important it is to stay grounded in what matters most to you.

“Pick your north star, and go do it,” she said.