Tag: Waldenström event

January 2, 2025

Building Bonds Episode 2: How to Find and Partner with a Doctor for Better Waldenström Care

Finding a doctor is important in your Waldenström macroglobulinemia care. A strong partnership leads to more informed decisions, personalized care, and a greater sense of control. Patient advocate Pete DeNardis, hematologist-oncologist Dr. Jonas Paludo from Mayo Clinic, and patient advocate Lisa Ramirez discuss how her decisions led to being treated by Dr. Paludo and forming a trusted patient-doctor relationship.

Building Bonds Ep. 2: How to Find and Partner with a Doctor for Better Waldenström Care

Hosted by The Patient Story

Finding a match is important in your Waldenström care. A strong partnership leads to more informed decisions, personalized care, and a greater sense of control. Join host and patient advocate Pete DeNardis, Dr. Jonas Paludo from Mayo Clinic, and patient advocate Lisa Ramirez as she discusses how her decisions led to being treated by Dr. Paludo and forming a trusted patient-doctor relationship.

Watch the Replay!

Edited by: Katrina Villareal

Discover the importance of second opinions and how even top specialists recommend them. Understand how a Waldenström macroglobulinemia specialist can provide a unique perspective having seen more cases. Learn about shared decision-making in Waldenström treatment. Hear first-hand experiences of navigating a chronic cancer with your doctor by your side. Get practical tips for advocating for yourself or a loved one in the treatment process.

We would also like to thank The Leukemia & Lymphoma Society and the International Waldenstrom’s Macroglobulinemia Foundation for their partnership.

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Thank you to Pharmacyclics, an AbbVie Company, for its support of our patient education program. The Patient Story retains full editorial control over all content.

Building Bonds Episode 1 - Patient-Doctor Partnerships for Better Waldenstrom Care

Introduction

Tiffany Drummond, Patient Advocate

Tiffany Drummond: I’m a patient advocate with over 20 years of experience in cancer research. My journey as a care partner began when my mother was diagnosed with endometrial cancer in 2014. I quickly realized the challenges of finding reliable information to support her care, so I am committed to helping others avoid similar difficulties.

At The Patient Story, we create programs to help you figure out what’s next. Think of us as your go-to guide for navigating the cancer journey. From diagnosis to treatment, we’ve got you covered with real-life patient stories and educational programs with subject matter experts. I’m your personal cheerleader, here to help you and your loved ones best communicate with your healthcare team as you go from diagnosis through treatment and survivorship.

We want to give a big thank you to The Leukemia & Lymphoma Society for its partnership. The LLS offers incredible free resources, like their Information Specialists who help you communicate with members of your healthcare team and provide information about treatment options.

We also thank IWMF (International Waldenstrom’s Macroglobulinemia Foundation), an organization specifically dedicated to Waldenström’s patients and care partners. They also offer free resources, including over 60 in-person support groups worldwide.

We want to thank our sponsor, Pharmacyclics, an AbbVie company, for its support, which helps us host more of these programs for free to our audience. The Patient Story retains full editorial control over all content. While we hope you find this helpful, please keep in mind that the information provided in this program is not a substitute for medical advice. Pete, a patient advocate and Waldenström’s survivor, will lead the conversation.

Peter DeNardis, IWMF Chair Emeritus

Peter DeNardis: I’m currently the chair emeritus of the International Waldenström’s Macroglobulinemia Foundation. I have been a long-time volunteer for the organization and a patient myself. I was diagnosed 20 years ago and I’m well aware of the importance of a strong patient-doctor relationship. I look forward to learning from our esteemed panelists about how best to build and maintain that relationship.

With us is Dr. Jonas Paludo, a hematologist-oncologist and assistant professor of medicine and oncology at Mayo Clinic in Rochester, Minnesota. His research interests include studies to understand the biology, genetics, and therapy of lymphoma and plasma cell disorders, and he is also a noted researcher in Waldenström’s.

Building Bonds Episode 2 - How to Find and Partner with a Doctor for Better Waldenstrom Care

Lisa Ramirez, Patient Advocate

Lisa Ramirez: I was diagnosed in 2021. I was getting into a doctoral program and had to do some routine testing and physical exams, and in the process, I was diagnosed with Waldenström’s macroglobulinemia. The diagnosing oncologist was retiring, so he passed me on to another doctor in his practice.

I did a lot of research on Waldenström’s immediately and read Dr. Gertz’s recommendation on getting a second opinion, which I appreciated. I looked for the doctor who I thought would be best in getting a second opinion from and that was Dr. Paludo since he specialized in Waldenström’s in young people. I got another opinion from a physician at a major cancer center in the state in which I live as well.

I had a great rapport with Dr. Paludo immediately, but I initially thought I would only see him for a second opinion since I lived in Texas and he was at Mayo Clinic. I made it work and secured Dr. Paludo as my primary oncologist. I was very pleased about that.

Proactively Participating in Your Care

Peter: It’s good that you immediately did research and also went for a second opinion. Is it appropriate to say that you were an involved patient from the start?

Lisa: Yes. I work in public health. I’m a natural researcher and a very curious person. I wanted to learn as much as I possibly could and as quickly as I could about Waldenström’s to plan out my course of treatment and to be a well-informed patient.

I listened to all the lectures I could get my hands on and tried to understand the philosophies of the different cancer institutes. They seem to have differing philosophies about treatment and I tried to find one that fit with my personal philosophy and how I wanted to approach treatment.

I wanted to learn as much as I possibly could and as quickly as I could about Waldenström’s to plan out my course of treatment and to be a well-informed patient.
Lisa Ramirez

Signs and Symptoms

Peter: Looking back, do you think you had any symptoms that you weren’t paying attention to at the time?

Lisa: I was having night sweats, but I didn’t I thought I was experiencing early pre-menopause symptoms. Now I know the difference between hot flashes and night sweats. There’s a big difference.

I had some testing done because of other reasons and there was a note to rule out lymphoma and to check in six months after. Right at the six-month mark, my primary physician had me see a hematologist because of those test results. I had zero symptoms then. I felt great.

Looking back, I had some input from other oncologists that perhaps I had the disease for so long that I thought I felt good. That small incremental change in a negative way can go unnoticed, but I thought, “Does it matter? If I believe I feel good, then I feel good.”

Insurance Concerns

Lisa: The average time between diagnosis and treatment is about two and a half years and that’s about how long it took for me, so I was right on pace with the average.

Peter: You got a second opinion in a different state. You live in Texas while Mayo Clinic is in Minnesota. Did you have any financial or insurance issues trying to see Dr. Paludo?

Lisa: Surprisingly not. I received some treatment in another city in Texas. When you break down the costs, that treatment was more expensive.

Different institutions have different priorities in terms of testing and the amount of testing at checkups. In my case, the cost of the additional testing outweighed the cost of travel to Minnesota. It ended up being more cost-effective and worth it to travel to receive treatment at Mayo Clinic.

Peter: You’re very fortunate in that regard. I’m glad that worked out for you. You’re under great care and it appears that right from the start, you’re a very involved, proactive patient, so I applaud you for that and hope that other patients can take your lead.

WM at a Glance

Peter: Dr. Paludo, many of us patients have a general idea of what Waldenström’s macroglobulinemia is, but can you give a 30,000-foot view explanation of what the disease is?

Dr. Jonas Paludo: Waldenström’s is a rare type of blood cancer. It’s a form of an indolent or slow-growing subtype of a B-cell non-Hodgkin’s lymphoma. It’s a disease that has some overlapping features between lymphoma and myeloma, but it’s a type of blood cancer.

Common WM Questions

Peter: You see patients either coming initially to see you or for a second opinion. They probably have similar questions, but in your experience, what are the more common questions that patients ask?

Dr. Paludo: I can group the most common questions into three specific categories. In one shape or another, they’re trying to understand: What is Waldenström’s? What is this disease? Then the next one is: what do we do about this? Do we have to do anything about it right now? What it will look like? And then the third one is: what is my prognosis? What can I expect out of this disease?

Peter: Those questions are pretty common for Lisa and me when we were first diagnosed, so it’s good to see those questions are still being asked.

Diagnostic parameters, treatment options, follow-up testing, and surveillance are not as well-established in rare diseases as they are in more common diseases.
Dr. Jonas Paludo

Getting a Second Opinion

Peter: Many in the medical community and even the IWMF itself encourage patients to get a second opinion in certain circumstances. Dr. Paludo, as a healthcare provider, what are your thoughts on patients getting second opinions?

Dr. Paludo: Waldenström’s is a rare disease and like any rare disease, a second opinion should always be considered. Diagnostic parameters, treatment options, follow-up testing, and surveillance are not as well-established in rare diseases as they are in more common diseases or more common forms of cancer, like breast cancer or colon cancer, for example. That’s where a second opinion can help.

In addition, the familiarity of physicians with the disease or the current evidence and data of the disease can be quite variable. It’s part of reality. We can’t keep up with all the information generated daily for all diseases. Getting a second opinion from someone who has more experience or more interest in that specific type of rare disease is very important and adds a lot to the treatment and management.

I always encourage second opinions. To be honest, with most patients I see with Waldenström’s, I’m the one giving the second opinion. But for the patients who we see that are local, I encourage asking for another opinion elsewhere to have different points of view. I don’t think a second opinion would ever hurt a patient. It can only add information and help with the treatment and plan.

Peter: That’s a good point and hopefully they’re not trying to juggle three different opinions. In Lisa’s case, it was the one that she felt more comfortable with, which is appropriate.

Dr. Paludo: That’s a potential downside, but the benefits of a second opinion outweigh that downside.

Lisa: Waldenström’s is so different in terms of it being a cancer because you want to time treatment perfectly and take into account your quality of life. With a lot of other cancers, there’s a rush to treat and there are very specific treatment regimens. With Waldenström’s, you’re playing a very long game of chess.

You want your partner to be someone who you trust and who understands your quality of life and your age as you’re moving along the course of treatment. You’re going to want someone who understands you well enough, to keep pace, and who has a similar philosophy and approach to treatment. With Waldenström’s in particular compared to other cancers or other diseases, it’s important when selecting an oncologist that there’s a good fit.

Different cancer centers can appeal to different types of people. Mayo Clinic and Dr. Paludo were the perfect fit for me.
Dr. Jonas Paludo

Knowing Your Options

Peter: How did you know where to go for a second opinion? You mentioned Dr. Gertz’s presentation, but how did you figure out what your options were?

Lisa: The resources from the IWMF immediately pointing to Dr. Gertz and understanding Mayo Clinic’s philosophy led me there and looking into physicians there. I found Dr. Paludo in relation to Waldenström’s and other aspects of Waldenström’s that were of particular interest to me. I immediately sought him out for a second opinion.

I seem to resonate more with the philosophy of Mayo Clinic. They seem to have an approach that is slower to overreact. Their approach feels more strength-based rather than fear-based and I respond to that. When I need to embark on an intimidating treatment like chemotherapy, I want my partner to be able to reassure me that I’m strong enough, that I’ve prepared enough, and that it is the right time.

I understand that people have different motivations for starting treatment and some people can be more motivated by fear-based approaches. I don’t respond well to that. I respond better to a strength-based approach and the reassurance that all my questions are answered and that there’s enough time spent understanding the procedure or what’s happening with the progress of the disease. I find direct information very reassuring.

I have had oncologists who took a different approach where they feel nervous about my condition and then I start to feel very nervous and anxious. I know that it’s best to time treatments correctly and wait a little bit longer. It’s a fine line. Different cancer centers can appeal to different types of people. Mayo Clinic and Dr. Paludo were the perfect fit for me.

Finding a WM Specialist

Peter: Dr. Paludo, you mentioned that some patients come to you initially while others come for second opinions. If you’re telling a patient to get a second opinion, where do you direct them to? And for the patients who come to you initially, how did they find out about you in the first place?

Dr. Paludo: I also rely a lot on the IWMF resources to help patients decide on where to go next. There are so many factors, like insurance coverage and cost of travel, that are so particular to each patient, so I try not to be very specific. I point them to resources that they can look at to see which one makes more sense based on insurance, cost, travel, timing, family members, where they are, and things like that.

As with most rare diseases, you find more experience in bigger centers because they tend to see more patients with their rare diseases. It doesn’t necessarily mean that’s the only place you can find experience and expertise. It’s just the more common place where you can find expertise for rare diseases. The IWMF helps with pinpointing areas with more expertise or experience with Waldenström’s than other sites.

Peter: Because of my involvement with the IWMF, I’m well aware of the services they provide. On their website, they have a list of top doctors to go to for a second opinion regardless of what part of the world you’re in. The IWMF also has online discussion groups and Facebook groups where you can ask other patients who they go to. Granted, that’s word of mouth from one patient to another, but you can form an idea of who are the more noted doctors and who you could see if you want a second opinion.

The biggest challenge that I see is often related to indications to start treatment… sometimes it’s better if we don’t jump into treatment and instead sit tight and watch very closely.
Dr. Jonas Paludo

Building Bonds Ep. 2: How to Find and Partner with a Doctor for Better Waldenström Care

Hosted by The Patient Story

Watch the Replay!

Treatment Approaches to WM

Peter: Dr. Paludo, what do you see that some healthcare professionals don’t get right about a WM patient?

Dr. Paludo: Waldenström is such a unique disease that the biggest challenge that I see is often related to indications to start treatment. Because of the uniqueness of this disease with overlapping features with other indolent lymphomas, sometimes I see more of a generalization of what we do for similar diseases applied to Waldenström’s. I understand where they’re coming from, but it doesn’t always fit with our best practices for Waldenström’s.

They haven’t seen a lot of cases and sometimes it can be difficult for a provider to sit tight on a patient who has a very high IgM level and hold off on doing something. It’s often easier to do something, but sometimes it’s better if we don’t jump into treatment and instead sit tight and watch very closely when patients are asymptomatic or not having significant symptoms.

Peter: I hesitate to say this, but back when I was first diagnosed, there was something called the 10,000 IgM Club. There were a handful of patients who felt that they were okay and feel fine. Their IgM level is 10,000, but their symptoms are fine. In hindsight, that may have not been, but every patient is different. You’re exactly right. It depends on a patient’s symptoms and how they’re feeling along with the blood values. It’s critical to go to a specialist if you can.

I’m Newly Diagnosed. What Now?

Peter: Let’s turn to the important role of the doctor-patient relationship in managing your disease course, both short- and long-term, especially about WM. It’s considered incurable, but with the more novel agents that have come around in the last 5 or 10 years, it’s much more treatable.

Lisa, you mentioned your path to getting a second opinion. What advice would you give to a newly-diagnosed patient who’s looking for care and what do you think is most important?

Lisa: What we’re talking about here is building rapport. You have to be able to trust your oncologist 100%. There are some scary moments and you question yourself. You want to have the reassurance of an oncologist who has expertise in this area, understands you, and has a sense of how uniquely your disease is manifesting.

Every WM patient is a little bit different, so find a physician who you can trust and sees you. Sometimes that’s not something tangible. It’s what occurs during a conversation and a sense that you feel shared insights or philosophies. During my visits with Dr. Paludo, he would ask, “And what else?” I loved that he always left room for all of my questions and he was always very direct with me.

You want to have the reassurance of an oncologist who has expertise in this area, understands you, and has a sense of how uniquely your disease is manifesting.
Lisa Ramirez

Do your research. Understand what it is that you want in terms of your quality of life and what’s important to you. For example, I was going to start treatment under the care of a different oncologist, which would have put at risk my ability to dance ballet on my toes because there was a higher risk of peripheral neuropathy with that particular treatment. At my age, I thought the first treatment I should do perhaps shouldn’t be that one. I was able to have that conversation with Dr. Paludo and talk about things that are important to me.

Oncologists see a lot of different patients and their priority is to save your life and get you treated, which is understandable, but it’s a little bit different with WM. My quality of life includes being able to dance on my toes, so losing feeling in my toes was a big deal. It would have negatively impacted my quality of life had I started with that particular treatment if I had the unfortunate side effect of being unable to feel my toes.

Find an oncologist who understands who you are as an individual, what your quality of life is based upon, what’s important to you, who you feel comfortable sticking with throughout your life, and who will map out a course of treatment that’s going to work for you. One time, Dr. Paludo said, “You’re probably going to have to do all the treatments. We just have to figure out what works for you when.” Everyone’s different, so that’s important.

Deciding to Stay Local or Travel for Your Care

Peter: You have a good rapport with Dr. Paludo. Do you still see a local oncologist in Texas?

Lisa: No, I see Dr. Paludo exclusively. I was already scheduled for treatment somewhere else, but I got cold feet at the last second. The first step in treatment is so critical. It impacts the next move and the next move and the next move. Even though those moves are spaced out—hopefully many years apart—it still sends off a ripple effect.

You want to feel very comfortable with your provider and the institution you’re receiving care from is critical. I had to advocate for myself and say, “I know it doesn’t make sense to seek treatment in a different state and to get my primary care from an oncologist so far away, but we’re going to Minnesota.”

How Often Do You See WM Patients?

Peter: Dr. Paludo, Mayo Clinic is a world-renowned medical institution, but, hopefully, many people with Waldenström’s also understand that it’s world-renowned for Waldenström’s macroglobulinemia. Out of curiosity, can you say how many patients you maybe see a day or in a week that have Waldenström’s?

Dr. Paludo: It’s variable these days, but I estimate about two to three patients a week with Waldenström’s and sometimes as many as five patients a day. We looked at this a few years back and to give some context, if you were to consider all practicing doctors in the US and all newly-diagnosed Waldenström’s patients in a year, each doctor will see a new case of Waldenström’s once every eight years. This gives you a sense of how rare diseases are very, very difficult to come across.

I want the patient to feel empowered that they can ask any question, no matter what it is, and bring up any concerns or fears that are important to them.
Dr. Jonas Paludo

Approaches to Personalized Care

Peter: You and Lisa have a very good doctor-patient relationship. In your experience, does each patient approach you differently? Do you have a different approach depending on what kind of interaction you have or what works best for that patient?

Dr. Paludo: My approach is different for each patient. The things that we always try to discuss and focus on are the main concerns that each patient brings to the visit, which can be different. If someone was recently diagnosed with Waldenström’s versus someone who’s reviewing, studying, researching, and now we’re talking about treatment, there would be some differences in how I approach each patient.

Managing Your Life with WM

Peter: Given that Waldenström’s is becoming more of a manageable disease, what is your guidance to patients when they first come to you as far as dealing with having a disease like ours? You have periods of requiring active treatment and periods of watching and waiting for the next shoe to drop, in a sense.

Dr. Paludo: It depends on the situation, but I’m always trying to discuss the key concepts related to Waldenström’s. We talk about follow-ups and treatment indications. I like to address that because they’re important for the patient, especially if they’re not coming to Mayo for their care.

At the end of the day, we always try to establish trust and an open space. I want the patient to feel empowered that they can ask any question, no matter what it is, and bring up any concerns or fears that are important to them. It’s difficult to do everything in one visit, although we do try, but sometimes we need several visits to discuss all of these.

Peter: That’s very commendable. That should be the model for all clinicians. Unfortunately, a lot of them are pressed for time or dealing with a large patient load, so they don’t make the extra effort, and you should be applauded for doing that.

WM Treatment Options

Peter: Lisa, you had some choices to make concerning treatment. Were you aware of the treatment options before you spoke to Dr. Paludo?

Lisa: Yes. The second oncologist I saw was supposed to be my first treatment opinion. When I started talking to her about the treatments, she said, “Gosh, you sure do know a lot about this. What do you think?” I didn’t get the first opinion that I was hoping for because I had done so much research that the oncologist felt that maybe I had a better sense of what treatment I should start with, which ultimately led me to a second opinion with Dr. Paludo.

I have done a lot of research, which I enjoy doing. It’s not a situation you want to be in, but I work in public health and public health strategy, so I enjoy strategy and research. I wanted to find out as much as I could about the treatment options. From the scientific papers, it’s not always clear. Actual patient experiences are something that’s missed in very scientific journal articles, which can only be shared through patient-to-patient experiences.

With Waldenström’s, that can be additionally challenging because we are each so unique. It’s a full-body disease that manifests differently. The symptoms are different from person to person. There are also fewer females with the disease and fewer people my age, so it can become more difficult to know exactly what to expect even though you do a lot of research.

What reduced my anxiety was talking to Dr. Paludo about being vulnerable about parts of the treatment that I thought were most concerning.
Lisa Ramirez

The Emotional Impact of a WM Diagnosis

Peter: You did a lot of research, but how were you dealing with it emotionally? How did it affect you when you were first diagnosed and how did you deal with the enormity of it?

Lisa: When I was first diagnosed, I was shocked. I knew I couldn’t have the conversation with my daughter that day, so she had a sleepover that night.

After that, I felt somewhat calm about it, even though I do have a history of anxiety disorder. I knew going into treatment that my outcomes would be better if my anxiety was reduced. Stress plays a huge role in your physical health in general, but especially as you undergo something as stressful as chemotherapy where you have a lot on the line.

I made sure to take care of my mental health through exercise and seeing a therapist weekly. What reduced my anxiety was talking to Dr. Paludo about being vulnerable about parts of the treatment that I thought were most concerning. I was able to talk in-depth about how I was concerned about a recurrence of my anxiety and eating disorders in the course of treatment.

Dr. Paludo was able to reassure me that, at any point in time, if I was having concerning symptoms, we could talk about it, but most of all, we could always stop treatment and take a different course of action. That option was never presented to me before by any of the oncologists I had seen. Having that way out and knowing that I had that autonomy was so reassuring and helped me get through a lot of rough times throughout treatment.

I had a pretty good treatment experience. It wasn’t always easy, but it was a lot easier knowing that I had the support of my oncologist to pivot, redirect, and find a different course of treatment that worked better for me. My quality of life was most important to both of us.

Peter: That focus on quality of life is critical. Every patient’s different, both physically and mentally, and it’s important to treat both aspects of how a patient approaches their disease.

Important Takeaways from Initial Consultation

Peter: Dr. Paludo, when you see a patient, what do you want patients and care partners to take away from that initial visit with you? What do you want them to understand?

Dr. Paludo: One of my priorities is to have patients understand that treatment for Waldenström’s is not a sprint but a marathon. It’s a long-term process that involves long-term planning, and we have to consider all short- and long-term strategies for treatment.

I usually say that when you’re getting treatment, you’re not in a long-term commitment. You can always stop and find a different option. I also like to discuss, usually in broad terms, that what we have today for treatment options has an overall similar efficacy. They are different in potential side effects, logistics, duration, and frequency. That often allows patients to focus on the implications of the treatment on their quality of life and their goals.

Once we remove the efficacy piece from the discussion, we can talk more about side effects and logistics. We can focus on how the treatment can help patients achieve what they want at the end of the day, which is improved quality of life, and accomplish what’s important to them. Those are things that I always like patients to take away from those initial discussions about treatment options before even we decide on which treatment to go next.

Lifestyle Changes in the Face of a WM Diagnosis

Peter: Lisa, you wanted to make sure you had a good quality of life. After you were diagnosed and started treatment, did you do anything different? Did you make lifestyle changes to help you emotionally and physically?

Lisa: Absolutely. Dr. Gertz said that frailty is the enemy, so I immediately got a personal trainer and hit the gym. People train for marathons. This is the rest of my life. I don’t want chemotherapy to knock me down. I need to be as fit as possible.

I also participated in an educational session on nutrition through The Leukemia & Lymphoma Society and met with a nutritionist. I changed my diet to reflect some of the recommendations based on those talks. I’m eating more of a plant-based diet and building up my strength as I approached treatment knowing that treatment was inevitable.

I saw a therapist weekly, which ultimately helped. During chemotherapy, I didn’t miss any work. I remained very active. I was still able to dance. I wasn’t allowed to skateboard anymore, but I was still exercising as much as I could to fight the fatigue and it paid off. That makes a big difference in terms of how one feels during the course of treatment and your ability to be resilient and make good progress in treatment.

Peter: I agree completely. It’s important to move. A lot of patients say that their treatment has debilitated them, but I tell them to try to move a couple of feet and take a couple of steps a day and build on it. It does make a difference.

Maximizing Your Quality of Life

Peter: Dr. Paludo, do you have any follow-up advice for Waldenström’s patients on how to deal with quality of life issues? Can they continue to live like they did before they had WM?

Dr. Paludo: Absolutely. It’s always difficult to cope with a new diagnosis of any cancer, including Waldenström’s. Every patient is a little different on how they try to cope. I try to understand what’s important for each patient and focus on what we can do to control what we can.

With Lisa, dancing was very important. We couldn’t control when treatment was needed, but we could control that she could continue to dance. It would be a form of exercise that helps her cope and keep some form of normalcy. Life can be disrupted with diagnosis and treatment, so trying to keep as much of a normal life as possible after diagnosis or when you’re going into treatment is very important. As you go through the watch and wait period with Waldenström’s before treatment or in between treatments, it’s very possible to live life like before as much as possible.

I’m not a mental health expert, so I also look for help. I refer my patients to cancer therapists and psychologists. The team we have at Mayo Clinic helps. I play within my limitations and always look for help from others who know more than I do about topics that are very important for every patient.

Patient Advocacy

Peter: Lisa, you’ve advocated for yourself right from the start. What would your advice be to newly-diagnosed patients or even those who are even in remission?

Lisa: For newly-diagnosed patients, get connected with IWMF. I was so impressed with the resources available for such a rare disease. It’s honestly very impressive how well IWMF is organized.

If you’re a young person or under 50, it can be more challenging because it’s almost a different disease. When you have young kids at home, there are a lot of different things to consider. Getting connected with the IWMF support group for young people was helpful. Find support with people in your community.

Watch lectures and read all the resources available sooner rather than later. You have some time to figure everything out. If you’re newly diagnosed and you don’t have symptoms that require immediate treatment, you have time to research.

It’s necessary, I would say also, to look at the different cancer institutes that have different philosophies. When you’re listening to lectures from different experts, find who resonates with you and what makes sense to you. Who do you seem to align with in terms of what feels right for you and what you value?

Take time to consider all that’s important to you so that you can locate the physician and your team that you’re hopefully going to be with for the rest of your life, working on achieving a good quality of life while living with this disease. Take in all the information, talk to your support network, and connect.

At first, I thought that having Dr. Paludo as my primary oncologist was not possible, but you may be surprised at what is possible so have hope and advocate for yourself.

It’s great to have an external brain to help process the information and to reflect back to you.
Lisa Ramirez

The Role of Care Partners

Peter: You approach each appointment with knowledge beforehand, you do your research, and you advocate for yourself. Do you go to your appointments on your own or do you take a care partner with you? You read that someone should always have someone else with them because they can mishear something. How do you manage that?

Lisa: I have a great partner and support. You’re absolutely right. Sometimes it can be overwhelming. When I would go to appointments with a different provider, I’d walk out sweating and notice I was so nervous during the appointment. Having someone there can be helpful. When I went to treatment, my partner would go with me. One time, my sister went with me.

Sometimes, you get disappointing news. I oddly got disappointed that I couldn’t do chemo a couple of times and I got upset and emotional, so to have someone to provide emotional support is helpful. It’s much better to not have to do it alone.

But if you are alone, there are people who are there to support you. At Mayo Clinic, there’s a whole team. Everybody there is supportive, so you can do it alone. It’s great to have an external brain to help process the information and to reflect back to you. Maybe you didn’t even notice that you weren’t feeling comfortable with a certain provider. It’s helpful to have someone to bounce off, so it’s important to have someone with you.

Peter: Dr. Paludo, what’s your advice in that regard? Do most patients come with someone to the appointment? And do you suggest it to patients if they don’t?

Dr. Paludo: Most patients come to their appointments with someone else. That’s very helpful and very important, if possible, of course. It’s difficult to take people away from their normal day-to-day lives, but it helps to have someone else also listening. We usually don’t remember everything that is discussed. Each person may remember different parts of the discussion. It helps, so I encourage that if possible.

Living with WM

Peter: Lisa, you’ve been living with Waldenström’s for a few years now. How do you not let Waldenström’s consume your everyday life? What’s your approach to living with it?

Lisa: In the beginning, it was difficult to not let it consume my life. For me, planning out a theoretical course of treatment to last my whole life was helpful. What helped was having that plan in place and also having a plan when I didn’t have symptoms or symptoms that I thought were bothersome to me.

Having those things mapped out in advance allows me to trust the plan and not have to think about it in my daily life. Once those decisions are made for the future, I can always change my mind at any point, but to have that mapped out for myself allows me to forget that I have Waldenström’s and live my life. It might take a minute to get there.

At first, it’s consuming. You’re consumed with the research. Don’t overreact. Take your time. Talk with your oncologist about a plan, put a plan in place, and then put it aside and live your life. Ultimately, treatment is all about having a good quality of life and living your life normally. You want to be able to do that and not add any additional stress to yourself. Putting a plan in place, putting it aside, and referring back to it when you need to is important.

Talk with your oncologist about a plan, put a plan in place, and then put it aside and live your life. Ultimately, treatment is all about having a good quality of life and living your life normally.
Lisa Ramirez

Waldenström: The Patient-Physician Relationship

Peter: Right from the start, you had a good relationship with Dr. Paludo. How has that evolved over the past few years? Is it different now than it was initially?

Lisa: Dr. Paludo has been very consistent. Initially, I met with him before I even met with who I thought was going to be my primary oncologist. I walked away from that conversation saying, “Gosh, I met the right oncologist for me. Too bad. I can’t possibly get treatment in Minnesota.”

It felt like a good fit from the beginning and we’ve built upon that trust. I instantly felt comfortable and felt trust. He engaged with me in a way that was strength-based and not over reactive. He’s very steady. Our relationship hasn’t changed much other than we’ve been through this treatment together and there’s a deepening of trust.

I’ve talked about my next treatment episode with my partner and when I have to do the weekly treatment, we’re going to live in Minnesota for six months. There’s no question about that. I know Dr. Paludo’s there for me and he’s my oncologist until the end, so I feel very comfortable with that.

Key Takeaways

Peter: Dr. Paludo, do you have any key takeaways for patients or healthcare providers in building and sustaining a strong relationship through the cancer journey?

Dr. Paludo: Advocate for yourself. Go after what you think is important for you. Lisa and I are on the same page. For the healthcare providers, what’s very important is to actively listen to each patient’s priorities. Listen and not just hear. Pay attention and focus on what’s important for each patient, like their main concerns and fears.

As providers, we have to be frank and honest with the limitations of what we know and what we don’t know about Waldenström’s. There are a lot of things that we know now that we didn’t know before, but there are a lot of questions that we can’t answer yet. Being honest with our limitations, paying attention, and focusing on what is important to the patient help build that trust, which is important in a relationship. We’re all going together through good and not-so-good moments in this long journey of Waldenström’s.

Being honest with our limitations, paying attention, and focusing on what is important to the patient help build that trust, which is important in a relationship.
Dr. Jonas Paludo

Peter: It’s good to see you’re both in agreement. You’re both following the proper path and I applaud both of you, especially for taking the time to share your experience with healthcare providers and patients.

Lisa mentioned that she first did a good bit of research through the IWMF website. I did that myself 20 years ago. I was a youngster back then and the services and support they provided meant so much to me that I started volunteering for the organization and I’ve been with them since then.

Waldenström’s is a rare disease, so you don’t encounter many people who have it, so finding an online community was of great benefit. Sharing stories with them, joining support groups, taking part in discussions, viewing webinars, and going to their annual educational forum are key components of becoming a more knowledgeable patient.

Before we had the technology, I would have my own chart that I would give to my doctor and say, “Here are my trends.” He would laugh at me, but he would look at it. We had a great relationship and that’s important to have. Be educated about your disease, know your options, what your preferred lifestyle, and what you want in quality of life, and pick a doctor who fits well.

Lisa: My therapist thinks Dr. Paludo is great. She’s convinced he took some classes in psychotherapy. She’s got great admiration for him. I’m also trained as a therapist and I would say Dr. Paludo has those skills, but please don’t leave the work you’re doing to be a therapist, although you’d be a great one.

Mayo Clinic is huge and yet after every visit, I would think, “How is it possible that each person on my care team was able to spend that much time with me?” I’ve never encountered that anywhere else. How is it that nurses remember me? People remember me. We had little inside jokes. Those things matter so much.

Our healthcare environment is changing. There’s limited time with patients. We’re speaking to healthcare institutions and I don’t know how providers get reimbursed and what expectations are in general.

Physicians want to have these kinds of relationships with their patients and perhaps there’s a larger pressure that prevents them from doing so. I hope that we can get back to that. Institutions like Mayo Clinic and physicians like Dr. Paludo give me the hope that it’s possible to have those kinds of relationships with patients in the current healthcare environment somehow.

Dr. Paludo: I don’t think I can say it better. It’s important to keep in mind what the priority is, which is the patient and what matters to that patient. Always keeping that in mind is the goal at the end of the day.

Conclusion

Peter: I enjoyed this discussion. It’s always good to meet with a fellow WMer and a noted, world-renowned Waldenström’s clinician and researcher. I’m very grateful for both of you for sharing your time. I hope others find this information very useful and beneficial as much as I did. Thank you both and thanks to The Patient Story.

Tiffany: Thank you, Pete, Lisa, and Dr. Paludo for an engaging discussion. It is so crucial to be empowered so that you and your caregivers can make informed decisions about your care.

Thanks again to our sponsor, Pharmacyclics, an AbbVie company, for its support of our independent patient program.

Thank you to our partner, The Leukemia & Lymphoma Society (LLS). Make sure to visit their website, particularly their Information Resource Center, which provides free one-on-one support. Thank you to the International Waldenstrom’s Macroglobulinemia Foundation (IWMF), which has over 60 peer support groups worldwide where they share experiences, discuss concerns, and exchange information.

Special thanks to The Leukemia & Lymphoma Society and the International Waldenstrom’s Macroglobulinemia Foundation for their partnership.

Thank you to Pharmacyclics, an AbbVie Company, for its support of our patient education program. The Patient Story retains full editorial control over all content.

Waldenstrom’s Macroglobulinemia Patient Stories

Kay, Waldenstrom Macroglobulinemia Symptoms: Nosebleeds, fatigue, fainting, bruises, hair loss Treatments: Chemotherapy (R-CHOP), Rituximab
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Pete D., Waldenstrom Macroglobulinemia

Symptom: Irregular blood test results during a regular workup for Crohn’s
Treatments: Chemotherapy, surgery, radiation, monthly IVIG
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Sheree N., Waldenstrom Macroglobulinemia

Symptom: Feeling anemic

Treatment: Chemotherapy (bendamustine & rituximab)
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Cindy S., Waldenstrom Macroglobulinemia

Symptom: Hyperproteinemia

Treatment: Chemotherapy
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Tags non-hodgkin lymphoma event, Waldenström event

Non-Hodgkin Lymphoma Patient Events

Building Bonds Episode 1: Patient-Doctor Partnerships for Better Waldenström Care

Post author By Katrina Villareal
Post date October 10, 2024
No Comments on Building Bonds Episode 1: Patient-Doctor Partnerships for Better Waldenström Care

October 10, 2024

Building Bonds Episode 1: Patient-Doctor Partnerships for Better Waldenström Care

The relationship between a patient and their doctor can make all the difference. A strong partnership leads to more informed decisions, personalized care, and a greater sense of control. Dr. Shayna Sarosiek, an expert in Waldenström macroglobulinemia, and patient advocate Jason Euzukonis discuss what makes their patient-doctor teamwork truly effective.

Building Bonds Ep. 1: Partner with Your Oncologist for Better Waldenström Care

Hosted by The Patient Story

Join Waldenström expert Dr. Sarosiek, and patient advocate Jason Euzukonis, as they discuss what makes their doctor-patient teamwork truly effective.

Free Online Program!

Learn how to build trust and open communication with your healthcare team. Understand the role of shared decision-making in Waldenström treatment. Hear first-hand experiences of navigating chronic cancer with your doctor by your side. Discover practical tips for advocating for yourself or a loved one in the treatment process. Explore how teamwork fosters a supportive environment for long-term care.

We would also like to thank The Leukemia & Lymphoma Society and the International Waldenstrom’s Macroglobulinemia Foundation for their partnerships.

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Thank you to Pharmacyclics, an AbbVie company, for its support of our patient education program. The Patient Story retains full editorial control over all content

Edited by: Katrina Villareal

Introduction

Tiffany Drummond, Patient Advocate

Tiffany Drummond: I have worked in cancer research for 20 years, but more importantly, I became a care partner and advocate when my mom was diagnosed with endometrial cancer in 2014. Her journey led me on a quest to find out as much information as I could to help with her care. Quite honestly, it wasn’t easy to find and that’s why we at The Patient Story put on programs to help people navigate life after diagnosis.

This program is hosted by The Patient Story, a multi-platform organization that aims to help people navigate life before and after diagnosis in human terms through in-depth patient stories and educational discussions, focused on how patients and care partners can best communicate with their doctors as they go from diagnosis through treatment in Waldenström’s.

We want to thank The Leukemia & Lymphoma Society for its partnership. The LLS offers incredible free resources, like their Information Specialists who can help you communicate with members of your healthcare team and provide information about treatment options.

We want to thank our sponsor, Pharmacyclics, an AbbVie company, for its support, which helps us host more of these programs for free to our audience. The Patient Story retains full editorial control over all content. While we hope this is helpful, please keep in mind that this program is not a substitute for medical advice.

Stephanie, The Patient Story founder and a blood cancer survivor herself, will lead this conversation. But first, we start with Waldenström’s patient voice, Jason.

Jason Euzukonis, Patient Advocate

Jason Euzukonis: My name is Jason. I recently turned 50 years old.
I’m married and have two children who are 13 and 10. I live on the North Shore of Massachusetts. I’m an avid runner and a sales rep in the athletic footwear industry, and I was diagnosed with Waldenström’s macroglobulinemia in June 2018.

Dr. Shayna Sarosiek, Hematologist-Oncologist

Stephanie Chuang: Dr. Shayna Sarosiek is someone whom we’ve had the pleasure of collaborating with before and have heard so many great things about. Dr. Sarosiek, can you tell us about who you are, what you do, and what drew you to this specialty?

Dr. Shayna Sarosiek: I’m a hematologist-oncologist. I work at the Dana-Farber Cancer Institute at The Bing Center for Waldenström’s Macroglobulinemia (WM). I went to medical school at the University of Miami and then did my residency and fellowship at the Boston Medical Center.

Jason’s Initial Diagnosis

Stephanie: We hear about shared treatment decision-making, being an empowered patient, or self-advocacy, and sometimes that concept can get a little bit lost in the mix. There’s a lot of conversation without specific examples. Our goal is to showcase not the only kind of communication and the relationship that can happen between a physician and a patient but also to showcase what a great relationship looks like.

Jason and Dr. Sarosiek have a great relationship and a lot of that is centered on communication and long-term relationship building. Having said that, Jason, what were the signs that something wasn’t right and who was the first physician you went to see?

Jason: I’m a runner and I know my body well. In the spring of 2018, I noticed signs that something wasn’t right. I can go for a run and feel tired but still slog through a few miles, but I started feeling some fatigue that felt off. Three or four minutes into the run, I would feel like my body was shutting down. It felt like blood and oxygen weren’t getting to my muscles.

After I learned my diagnosis, it turned out that’s exactly what was happening. It led me down the path of trying to figure out what was going on. I went to my primary care physician then to a hematologist then to a general lymphoma specialist. I went through multiple steps before I ended up at Dana-Farber with a team that specialized in my subtype of non-Hodgkin’s lymphoma.

Primary care physicians are not cancer specialists.
Stephanie Chuang

Stephanie: I want to dive into some of this because I think different parts of your story will resonate with different people. As we know, primary care physicians are not cancer specialists. Yours ordered blood work and saw something was wrong, but your self-advocacy started pretty quickly. Can you describe that?

Jason: The primary care physician was able to identify that something wasn’t right. I was very anemic and they had me come in within a day or two to make sure blood counts weren’t crashing in case there was some internal bleeding, in which case I would have needed to go to the emergency room. Things seemed stable, even though my blood counts were low, and that’s when they kicked me over to the hematologist.

I started doing more research and realized that I needed someone who knew the disease.
Jason Euzukonis

As I look back, there’s certainly a role for hematologists, but even then, especially for my situation with a rare type of non-Hodgkin’s lymphoma, you want to go to another level. That’s when I started doing more research and realized that I needed someone who knew the disease.

There were some things that the hematologist said that jumped out at me. When they were talking about treatment, they said, “We treat all these tough types of non-Hodgkin’s lymphoma the same way with chemotherapy.” I thought that didn’t sound right. I was fortunate that I knew someone who worked in a lab at another medical center in Boston and that’s when we started taking a deeper dive and getting the true diagnosis of Waldenström’s macroglobulinemia.

This is why I think it’s important for a patient to continue doing research. They were great over there, but during that time, if you search Waldenström’s macroglobulinemia, it’s not going to be too hard to find The Bing Center at Dana-Farber.

When I realized that there was a team there that truly specialized in my cancer, that’s when the real journey began of getting over to that team. I felt like the more I could work with doctors who truly know this disease inside and out, the better my chances of living a normal lifespan.

Doing Research & Asking Questions

Stephanie: Jason, you mentioned in a previous conversation that you love research. I was a professional journalist and a research geek myself. When I became a patient, I felt very self-conscious about being labeled as a problematic patient, which I defined as asking too many questions. Did you have to get over any hump like that, even though that’s your nature to ask questions, to want to know? Do you have guidance for those who have less of an affinity for asking questions or wanting to take up that space?

Jason: I didn’t have a problem getting over that. My life was on the line. I’m naturally curious anyway and when I get on top of certain topics, I like to take a deep dive and learn as much as I can, but I don’t have a problem asking questions.

That said, I know there are patients for whom that can be challenging. We’ve had to deal with that in our own family where an older relative got a difficult diagnosis. Their generation tends to be a little bit shyer about questioning the doctor, but I think good doctors have no problem with patients asking questions and probably prefer that.

Get your family or friends involved because there’s likely someone who will take the bull by the horns. Let them know the situation because there likely is somebody who will be more familiar with what to do and what questions to ask.

I’m naturally curious anyway and when I get on top of certain topics, I like to take a deep dive and learn as much as I can
Jason Euzukonis

Patient Demographics

Stephanie: Dr. Sarosiek, can you describe how many years you’ve been focused on Waldenström’s and how many patients you see on average?

Dr. Sarosiek: I’ve been focusing on Waldenström’s for about four years now since I came over to Dana-Farber. It varies a little bit, but I see about 30 to 40 patients a week and the vast majority of them have Waldenström. A few of those patients might be patients with a precursor to Waldenström called MGUS (monoclonal gammopathy of undetermined significance) or related disorders.

Navigating Your Way to a Specialist

Stephanie: You’re seeing 30 to 40 patients a week, the majority of them have Waldenström’s, some of them with MGUS. Whereas in the community, hematologist-oncologists are seeing everybody across the board, so they may only see one or two Waldenström’s patients a year.

Similar to Jason’s trajectory, most people are probably going to see a community provider and then end up with someone like yourself. Dr. Sarosiek, what is your guidance to people on how to get to a specialist and the importance of that?

Dr. Sarosiek: Because of what I do, it’s important to get to a specialist in whatever way you can. If you’re able to and have the means to see a specialist, that’s the best because you can have one-on-one dedicated time.

There are other ways of getting a specialist’s opinion. If you’re unable to travel, Dana-Farber offers grand rounds where you can send in your records and physicians can review them.

I give patients as much time as I can to dig deep into their disease knowing that it’s not possible in the community to specialize in Waldenström’s.
Dr. Shayna Sarosiek

Some employers have second opinion programs and it’s a good idea for patients to look into that. The employer provides the ability to give your records and a physician can give a second opinion. Those physicians are typically at large academic centers that specialize in the disease. You can also access some opinions of physicians as well through some support groups. It wouldn’t be exactly for your case, but it might be a way for the patient to inform themselves and learn a little bit.

But if possible, seeing a specialist is a good idea. Having practiced for a few years before I came to Dana-Farber, I saw a handful of Waldenström’s patients a year. I never could have known all the literature that there was to know about Waldenström’s then or any other particular disease. If you’re able to see a specialist, they might be able to better tailor your care around all of the literature on that one disease.

The other part that I try to do with my patients—and hopefully I’m okay at it—is to recognize that when patients come to see me, typically they’re seeing their local doctors who are excellent physicians but don’t know all the details. I give patients as much time as I can to dig deep into their disease knowing that it’s not possible in the community to specialize in Waldenström’s.

Decentralized Care

Stephanie: Many people hear, “Go see a specialist,” but logistically speaking, that might seem daunting for some people, especially if this is something that they’re going to have to be minding for a long while. How does that work? Do they have to travel every single time? Do you have relationships where patients see you as the specialist, but they’re getting their blood draws and some of the routine care closer to home?

Dr. Sarosiek: We have a lot of cases where patients do what works best for them. Patients who live nearby can travel to see us. We have an ongoing relationship with routine care and routine blood work at our center. But a lot of our patients can’t travel, so they have a local oncologist who we’re willing to work closely with and they can have their routine follow-up there.

Patients will see us once a year and then for the rest of the year, we remain available to them for questions or concerns. Sometimes we might do an initial consult and then tell the patient if something comes up in the future, now that we have a little bit of their background, their local oncologist can reach out to us with questions or concerns or they can come back if and when they have to make a big treatment decision. We can tailor it to what works best for the patients in terms of their ability to visit our center.

Stephanie: That’s wonderful. It sounds like you are as flexible as you possibly can to meet the different situations that patients and care partners have.

My gut was telling me that there should be more discussion between the patient and the doctor.
Jason Euzukonis

Your Doctors, Your Decision

Stephanie: Jason, the first place you were at, you were there for a year before you went to Dana-Farber and saw Dr. Sarosiek. Could you describe what the difference was between where you were before and Dr. Sarosiek?

Jason: With the doctor I was seeing before, there wasn’t as much back and forth in terms of decision-making. It was here’s what we’re going to do and that’s that. I felt like I didn’t know if that was the right approach. My gut was telling me that there should be more discussion between the patient and the doctor.

By the time I got to Dana-Farber, which was about a year after my diagnosis, I couldn’t believe the difference. At my first appointment, I worked briefly with another doctor before Dr. Sarosiek and that doctor was phenomenal. I remember him sitting back and saying, “What questions do you have?” He took more time than any other doctor I’d ever met with before and that seems to be the case with the whole team at Dana-Farber.

That’s something important for all patients to remember. If you feel like you’re getting rushed, if you feel like there’s not a good discussion with your doctor, then you might want to see if there are other options. It was just such a big difference not just between Dana-Farber and that one hospital, but also almost with any other doctor I’ve met with before.

How the Right Care Impacts Mental Health

Stephanie: Mental health is a huge part of every diagnosis, but because this is long-term, it’s a huge part of the consideration. Can you describe the daily impact and what shifted for you after you moved to Dana-Farber?

Jason: In that first year after my diagnosis, I had a massive amount of anxiety. I woke up every morning and I could feel it in my chest. I had to spend a good solid half hour in quiet meditation every day. Fortunately, I’m an early riser, so I’m up before the family and I get that moment of quiet.

Meditation was huge for me. Whether people believe that works or not, the point is to find things to help you get through your day. At the end of the day, we have to get used to living a long time with this cancer and at some point, once you start to feel better, you’ve got to get back to your routine in terms of work and, in my case, raising a young family.

A cancer diagnosis can feel very lonely and being around others who are going through something similar is helpful.
Jason Euzukonis

I felt like I lost control of my health, so I was trying to do whatever I could to reclaim that control. I changed the way I eat. I was able to get back to exercise. It doesn’t have to be an intense form of exercise. It’s simply moving, like going for a walk or gardening. It’s helpful that those were the things that I did.

Support groups are a critical component in moving forward with your mental health. There are a lot of people who have been through some difficult journeys in those groups. You can learn a lot. If you’re dealing with something, there’s a good chance that somebody else in that support group has been dealing with the same thing at some point. Another great way to help with your mental health is to talk to others who are on the same journey. A cancer diagnosis can feel very lonely and being around others who are going through something similar is helpful.

Stephanie: Absolutely. I know you lead a couple of support groups for the IWMF, so thank you for highlighting that.

It’s a journey for patients as they get used to living with this disease and restructuring their lives around the disease. I have to change a little bit of who I am for the patients depending on where they are in that journey.
Dr. Shayna Sarosiek

Approaches to Care from a Doctor’s Perspective

Stephanie: Dr. Sarosiek, hearing Jason’s journey to you, how often do you see patients who are in a very similar space where they’ve been told what to do? What are you noticing from the patients you’re seeing and how do you approach them when you first meet them?

Dr. Sarosiek: Patients will see me and say, “What would you do for my treatment? This is what I was told I have to do.” Luckily with Waldenström’s, we often have quite a few options. I lay out the options and some patients don’t know that they have other options and that’s an important part of seeing a specialist.

The longer I’ve been in Waldenström’s, the more I learn that a lot of patients face something similar to Jason. I can’t speak to this personally, but patients come to see me initially around the time of diagnosis and it’s an everyday, day-in, day-out thing where they’re thinking about the disease and worrying about the future.

It’s a journey for patients as they get used to living with this disease and restructuring their lives around the disease. I have to change a little bit of who I am for the patients depending on where they are in that journey. Initially, patients will have a lot of questions and a lot of anxieties. I even tell them that this is a time when you ask questions because relieving your anxiety or getting questions answered is important right now.

At one point, they’re going to learn to live with this and feel more relaxed, and it’s not going to be the only thing on the front of your mind all the time. I try to adjust to patients as they work their way through because it’s life-changing, but it also changes during the time that they’re living with the disease as well.

Approach with Different Kinds of Patients

Stephanie: You see different kinds of people with different personalities and preferences. I know that there’s so much more depth to this, but could you generalize the different kinds of patients and care partners who walk through the door? Jason is very research-oriented and has no problem asking questions. How about the other kinds of people who are not the same? What’s your guidance to them on how to approach a Waldenström’s diagnosis?

Dr. Sarosiek: That’s something that I try to feel out during an appointment. Who am I meeting with and what works best for them? Many of our patients who come to Dana-Farber for a second opinion tend to ask more questions and want more information. But as I talk to the patients in the first few minutes, some patients are overwhelmed by a lot of information, especially in the beginning. I try to tailor what I’m saying or what I’m offering in that first appointment in terms of information.

Then you might have someone who wants to learn more after they get over the initial shock or anxiety about the diagnosis. Sometimes after I give them the options, patients want more guidance from me rather than leaving the decision up to them. There are a lot of different people and a lot of different personalities and I try to feel that out, so hopefully I can best serve the patient in a way that would make them most comfortable with their disease.

Stephanie: Are there top questions you recommend that patients should ask their doctor after a Waldenström’s diagnosis that would be pretty key in helping them understand the disease and how the care is going to follow?

Dr. Sarosiek: A lot of patients want to confirm if they have the right diagnosis. Most of the time, they do but occasionally, that’s not the case. Part of what we do in that initial visit is walking through to confirm that a patient has Waldenström’s. No one wants to hear that they have cancer, but sometimes that helps patients to understand that this is the cancer that they have and they can move forward without having doubts.

It’s important to ask what treatment options are available. They should ask, “Are there other things that I could consider as my options? Are there alternatives?” Most cancers do; not all of them, but most have multiple options for treatment.

Knowing the key markers to watch closely empowers the patient to know what’s going on with their disease.
Dr. Shayna Sarosiek

Patients should ask about the differences in the treatments and that depends on the patient’s goals. What are the differences in side effects? How long am I going to be on treatment? The patient can help tailor their treatment to what their goals are in life.

Another key question is, “What do I need to look at going forward? What are the most important markers?” With Waldenström’s, we watch their IgM level and we watch for anemia. That’s another key thing that often helps patients to feel a sense of control if they know exactly when they should be following up and what they should be looking for. We always check labs and a hundred values will come up on any patient portal for any visit, but knowing the key markers to watch closely empowers the patient to know what’s going on with their disease.

You have a certain amount of time with a doctor and it’s a matter of being more upfront and telling them if you’re not comfortable with where things are at with the relationship.
Jason Euzukonis

Taking Back Control of Your Care

Stephanie: I’ve heard control come up a couple of times and that resonates with me as well, the sense of how to regain control. Like you said Dr. Sarosiek, some people are clearly overwhelmed and you recognize that they may not be able to or want to hear and digest a ton of information, so you tailor the conversation to them. What is your recommendation on anything else that can help them in the beginning? Jason, when you had some problems feeling heard or feeling like an actual participant and partner in the conversation, what is your recommendation?

Jason: In retrospect, with the doctor who I saw before I got to Dana-Farber, I probably should have been more upfront and said, “I’d like you to hear me out a little bit more. Are you okay with me asking more questions?” Because I think a lot of people have a hard time getting past that hurdle. I wish I would’ve been more upfront because for all I know, maybe they were more open to a back-and-forth.

The challenge that the doctor ran into was that particular center was overwhelmed. The healthcare system was very taxed. It was one patient after another and it felt like they didn’t have the time. I don’t think that was the fault of the doctor. But at the end of the day, it’s your life. You have a certain amount of time with a doctor and it’s a matter of being more upfront and telling them if you’re not comfortable with where things are at with the relationship.

Ask your physician, ‘What’s the best way for me to ask questions?’… You need to have a comfortable way to reach out to your provider and be able to ask those questions.
Dr. Shayna Sarosiek

Stephanie: Thank you for pointing that out. It’s true. The systems are quite inundated, unfortunately, and time is the biggest resource that is unavailable. Dr. Sarosiek, do you have anything to add?

Dr. Sarosiek: As a physician, I agree that there are a lot of time constraints in terms of seeing patients and other responsibilities. You could ask your physician, “What’s the best way for me to ask questions?” Maybe there isn’t enough time in that initial appointment or they have a full schedule.

They may say, “You can reach out to me through the patient portal or talk to my nurse who’s an excellent resource.” Some patients email and if they’re comfortable with that, that’s another avenue. You have to see with your physician the best way that they feel comfortable and a way that you feel comfortable communicating. If you can’t get all of that done in a clinic appointment, then is there another way? Because that’s a key part of the relationship.

As a physician, I feel like it’s important to be available if questions come up, particularly in the beginning when there are a lot of anxieties or questions surrounding a diagnosis. Even as time goes on, there can be things that pop up and the patient wants to know if it’s something they should worry about. You need to have a comfortable way to reach out to your provider and be able to ask those questions.

Navigating Conversations Between the Patient and the Physician

Stephanie: Dr. Sarosiek, you see so many Waldenström’s patients, family members, care partners, and caregivers. What’s your message to healthcare providers who don’t see so many Waldenström’s patients and who may not understand how to navigate the conversation? What are your top tips for them on how to navigate these conversations in the beginning?

Dr. Sarosiek: I don’t know exactly the secret to this, but I do think that as a physician, it’s important to know that we don’t know everything. I know a lot about Waldenstrom’s, but still, I don’t know everything and I certainly don’t know a lot about things outside of Waldenstrom’s. It’s important for us all to realize that we have limitations and to be open to hearing from other people.

Physicians who don’t have the expertise shouldn’t hesitate to reach out to specialists at larger academic centers and feel free to ask questions.
Dr. Shayna Sarosiek

We try to be available to other providers who might not have expertise. I usually tell my patients to tell their local doctor that I’m more than happy to answer questions and be available. Physicians who don’t have the expertise shouldn’t hesitate to reach out to specialists at larger academic centers and feel free to ask questions. People email us a lot and even if I don’t know who they are or I haven’t personally interacted with them before, we’re happy to answer questions. The goal for all of us is to provide the best care.

As a physician, it’s important to be open to learning. I do it all the time. I see patients who have other clinical questions or needs that I don’t know about, and I reach out to specialists in different fields to try to answer those questions. We all have to be open to learning and open to asking other people questions when we don’t know the answers.

Understanding Waldenström’s Treatment Options

Stephanie: It’s a rapidly shifting landscape of treatment options in lymphomas, non-Hodgkin lymphoma, including Waldenström’s, and there’s a lot of discussion we’re hoping can happen in the clinic between the physician and the patient. Jason, before you met Dr. Sarosiek, where was your mind in terms of wanting to understand treatment options and what was that first conversation like with the other physician?

Jason: That was a very difficult and very different time. I didn’t know even remotely as much as I know now, so I was still very much in the mindset of doing whatever the doctor said. As I got deeper into the journey, that’s when I realized that there were other options, but I initially pretty much did what the doctor said.

My treatment options are a tad more limited than the average Waldenström’s patient. Chemotherapy wasn’t a great option for me. In retrospect, the good news is that the previous hospital did put me on the right path, so I’m grateful for that. I didn’t know about the other options anyway and I likely would’ve started with the same option. As time went on, I got more informed and realized the right questions to ask, but I didn’t know them back then.

Stephanie: Dr. Sarosiek, how do you define what Waldenström’s is at the first meeting? What is top of mind for you as you try to lay out treatment options?

Dr. Sarosiek: I draw out the bone marrow and how the IgM comes out of the bone marrow. I usually try to explain it and do a little bit of a drawing because some people are more visual while other people like to hear it. I give a little background about Waldenström’s and ask what questions they have and what they want to know.

Usually, at a first appointment, patients have something that’s at the forefront of their mind or they have a list of questions. If I’m spewing out information about other things that they don’t care about before I answer the question that’s most burning, it’s not helpful. I often ask them what questions they have and that guides the conversation.

Ultimately, we often end up covering the same things at every new appointment that I have with a patient with Waldenström’s, but we might get to it in a different order or a different way, depending on what’s most important for them.

Stephanie: It sounds like during the initial meetings, you’re meeting people where they are. At what point do you lay out the treatment options? Whenever that happens, how do you lay out the options in a way that people will understand and the impact on quality of life?

Dr. Sarosiek: There’s a small percentage of patients that need treatment immediately. For those patients, in the first conversation, we go through the diagnosis and then we jump right into treatment options.

Stephanie: What’s that profile? Why do they need treatment? How do you explain to them why they need treatment faster than other patients with Waldenström’s?

Dr. Sarosiek: A lot of our patients present similar to what Jason described. They have pretty significant anemia, their disease was brought to their attention, and they have symptoms that need to be addressed right away. In the case of Waldenström’s, the reason most patients need treatment is because of anemia. They presented to their doctor to work up the symptoms of their anemia.

Another percentage of patients will have hyperviscosity or thickened blood and that’s causing symptoms related to their Waldenström’s. In those cases, patients typically need treatment right away, so we jump into treatment discussions.

Some patients come to us because their disease was incidentally diagnosed. They had a routine blood test for their annual checkup with their primary doctor and they were noted to have high protein or very mild anemia that’s not causing any symptoms. In those cases, we have the opportunity to discuss treatment later on. We often don’t get to treatment discussion on the first visit; that comes up months or even years later.

Stephanie: For the majority of patients, when you do talk about treatment decisions, how do you lay these out for them?

Dr. Sarosiek: I usually walk through the options. Often with Waldenström’s, we’ll have two or three different options. I typically write those out and give the big-picture details. Is this a treatment you stay on for years or is it a limited-time therapy? What are the main side effects that patients can experience? What are the biggest risks that we worry about with each of those treatments?

Next, I try to figure out what might be most important to the patient. Are they someone who doesn’t want to be on a pill every day? Are they someone who would hate to take a pill because they would miss it all the time? That information helps me to guide the patient on which treatment option might be better for them.

Stephanie: Can we go into specifics of the major courses of treatment that you would offer? You mentioned the continuous and time-limited therapies. What patient profile would you consider for one versus the other?

Dr. Sarosiek: For Waldenström’s, one of the main treatments that we talk about is chemoimmunotherapy, which is chemotherapy and immunotherapy together. It’s an IV therapy and it’s time-limited, usually four to six months. Some patients prefer to have a very time-limited therapy. There are risks associated with that, particularly infections. There’s a small risk of damage to the healthy cells in the bone marrow, so that’s an important conversation to bring up with patients

On the other end of the spectrum is another treatment option, which is oral therapy. Patients take pills every day and it’s continuous as long as your disease is responding, which is often for years. It’s a little bit easier because you’re not getting aggressive therapy upfront with all of the treatment at once. It’s low-level therapy all the time. There are risks associated with that as well. For example, a small risk of heart side effects, but in a patient with severe heart disease, I might stray away from using that as a first option.

Then there are some options in between, like targeted therapies that are injections and we use those in a small percentage of people. Luckily, Waldenström’s has a lot of different options.

Stephanie: What are some of the most common questions you get from patients? Are there some that rise to the top when you’re introducing these treatment options?

Dr. Sarosiek: An important question is: how will I be able to live my life during these treatments? Many of our patients are still working, have families to raise, and have other things that are important to them, so they ask, “What will my day-to-day life look like?”

Another important question is, “How will this treatment look to people around me? Will I lose my hair? Will I be constantly sick?” That’s a huge part of how patients can deal with and move forward with their disease. The biggest thing is what their lives will look like on the treatment.

The next important question that patients ask is, “How long is this treatment going to work for? What’s going to happen with my disease if I start this treatment? Am I going to need more treatment again in a year or two?”

They also ask, “What’s the worst thing that could happen to me from this treatment? What are the scariest risks associated with the treatment?”

Dr. Sarosiek and I did have to decide on treatment when I was starting to experience some side effects… That’s when Dr. Sarosiek led into the conversation about shared decision-making.
Jason Euzukonis

Stephanie: Jason, your first line of therapy was a BTK inhibitor. You had some rituximab infusions earlier on, but you were on the daily pill. What was that like for you? What were the considerations for you before you met with the Dana-Farber team?

Jason: At the time I was diagnosed, there weren’t quite as many options as there are now, so I’m a lot more at ease knowing that there are a lot of good options on the table for me when the time comes. I was already responding well to a BTK inhibitor. By the time I got to Dana-Farber, there wasn’t a need to change it, I guess.

Probably the more relevant question from someone in my shoes is: had chemotherapy been an option, which way would you go? That’s a common question with pros and cons, as Dr.Sarosiek mentioned for both approaches. Had both been an option for me, I likely still would’ve chosen the same path of the BTK inhibitor.

As a younger patient, there are some things to think about in terms of the long-term potential side effects of chemotherapy versus targeted therapy. I’m in pretty good health overall, younger, and don’t have heart issues, so I wasn’t all that concerned about any potential side effects surrounding my heart.

Dr. Sarosiek and I did have to decide on treatment when I was starting to experience some side effects; nothing overly threatening but more annoying. I approached her and asked, “What do you think about cutting the dose?” That’s when Dr. Sarosiek led into the conversation about shared decision-making and presented this newer version of the targeted therapy. I guess it’s the best example of the decision-making with Dr. Sarosiek that put me on the right path.

Stephanie: What I appreciate about this is you had clearly done enough research where you even knew to ask about lowering the dosage. What got you to that point? What were your considerations about staying on something that had been working versus shifting completely?

Jason: At the end of the day, part of it is a certain amount of trust in your doctor. I have my feelings on things, but I quite literally would trust Dr. Sarosiek with my life. But at the same time, this is where hopefully people do their homework and read up on what’s latest and greatest.

I had already read up a bit on the newer targeted therapy that Dr. Sarosiek presented and when she mentioned that, I was also fortunate that it had recently been approved. I was already aware of it and knew that the side effect profile was better on it, so I was very comfortable when she brought up moving to that.

Knowing the side effects I was dealing with, there was a good chance a lot of it was related to what I was on. With the newer version of that, based on the data, those side effects were improved. It’s a combination of doing your research, trusting your doctor, and asking them what they think.

Addressing Side Effects

Stephanie: Dr. Sarosiek, how many times are you seeing people who are nervous to even talk about the side effects and how do you address that? We’ve heard from other people who are hesitant to bring up side effects because they’re worried their doctor’s going to take them off of their treatment because they want to preserve as many options as possible.

Dr. Sarosiek: A lot of patients are comfortable discussing their side effects; that’s my experience, at least. They’re comfortable saying what it is that’s going on without having to worry that we’re going to adjust their treatments or change their outcomes because we stopped therapy or changed therapy. I would say most patients are comfortable saying if they have a side effect.

Although maybe I have some patients who are scared to tell me that they have side effects, on the other hand, I do have some patients who don’t want to know about potential side effects from treatment. A lot of patients want to know what they can expect so that if it happens, they’re aware and not worried. But once in a while, I’ll tell a patient this side effect might happen, but they don’t want to know because either they’re then going to worry it’s going to happen or they feel like they might manifest that for themselves if they know about it.

We can still have a conversation about if it’s a side effect they can live with or if we need to change their treatment because of it.
Dr. Shayna Sarosiek

Again, it’s trying to feel out what the patients are comfortable with hearing in terms of side effects. I hope I make patients comfortable to know that they can tell me about their side effects without me immediately making a treatment decision for them based on the reported side effects. We can still have a conversation about if it’s a side effect they can live with or if we need to change their treatment because of it.

Stephanie: Jason, what were the main key side effects that you were experiencing that brought this discussion up for you?

Jason: Mouth sores were probably the biggest one. I had a lot of mouth sores. They were brutal. I was starting to experience some joint pain. Sometimes it’s tricky to determine if I’m experiencing side effects from the treatment or if I’m getting a little older. But I was getting the sense that it was a sudden increase in joint pain.

The blood pressure was a little higher than I would’ve liked. The platelet count wasn’t dangerously low, but it was a little on the low side. From what I had been reading on the newer version, it seemed like a lot of those side effects had been improved, so I was pretty comfortable. I was responding well; it was just annoying side effects.

Stephanie: Dr. Sarosiek, how do you navigate the conversations? People have different preferences and there is that mental hurdle of not wanting to make too much of a deal about side effects.

Dr. Sarosiek: When patients have side effects, then I try to feel out if there is anything that they would like to do about them. If someone has mild, loose stool once every few weeks, they might say, “Oh, forget it. It doesn’t bother me. I’m telling you about it so that you know.”

My next approach is to try to find some supportive care measurement that we might be able to do. I have a lot of patients on the treatments we use for Waldenström’s who have loose stool or diarrhea and typically, adding fiber to their diet, like a fiber supplement once a day, is quite helpful. It treats it and they can continue on the same dose.

For a lot of the side effects, I ask if it bothers them, and if it does, we try some supportive measures. If the supportive measure doesn’t help, then it is a conversation about whether or not we want to decrease or change the dose. In that case, I try to bring up any data that we have in that setting to reassure patients that if we decrease the dose, the patients will still have very good outcomes. Often, we have data to help guide us if we should reduce the dose or not. We think about that, but usually, we try other supportive things first so that we can try to stick to the regimen that’s proven in the literature.

As Dr. Sarosiek knows, I typically will ask, ‘Hey, what are you seeing? What’s the latest and greatest? Any thoughts about the future?’ That’s been my approach.
Jason Euzukonis

Patient-Physician Relationships

Stephanie: This is a long-term relationship that’s happening. What are the other points where major discussion tends to happen? I imagine it’s talking about active surveillance or watch and wait, as well as at any point that treatment may need to come up. Is that the case? How do you both approach this as an ongoing relationship that’s different than other cancers?

I think about it because I get reminded twice a day when I take my pill. I try to stay up to date on what’s latest and greatest. Ultimately, the day will come when Dr. Sarosiek and I will have to figure out what the next best step is. The good news is there are a lot of good options, so that lessens my anxiety knowing that there’ll be a lot of good options on the table for me when the time comes.

Jason: I’m on treatment, but while I could potentially get many more years out of this treatment, the reality is at some point, I’ll start to slowly lose the response. From a mental standpoint, I’m pretty good at being able to compartmentalize. I’m fortunate enough that I can move through my day without it weighing on me.

We meet every three to four months. I’ll go in for blood work, which is helpful for me because we can get a pretty good idea of not just the disease itself but also my overall health to avoid any pitfalls there as well. As Dr. Sarosiek knows, I typically will ask, “Hey, what are you seeing? What’s the latest and greatest? Any thoughts about the future?” That’s been my approach.

If we’ve known them for months or years and they show up one day and seem a little bit different than they have been at every other visit, then something’s off with their disease and we should look into it.
Dr. Shayna Sarosiek

Dr. Sarosiek: From my perspective, part of what drew me to oncology and which I love about Waldenström’s is we have this luxury in most cases to get to know the patients and be able to sit down and talk about them outside of their diagnosis. That’s what I love about what I do. It’s great because I get to know the patients and that’s how I know how they are doing.

If I know a patient is a runner, loves to spend their time golfing, or loves to spend their time with their grandkids, then they come in and say, “I cut back on my running,” or “I’m not hanging out with my grandkids,” I don’t necessarily have to ask, “What are exactly your symptoms?” I know them well enough to realize that if they’re not doing what they love to do or what they’re usually doing, something has changed.

Part of active surveillance, watch and wait, or monitoring someone on treatment is getting to know them and being able to tell if they’re not able to do the same things that they were doing. If we’ve known them for months or years and they show up one day and seem a little bit different than they have been at every other visit, then something’s off with their disease and we should look into it. What I love about oncology and what I do now is getting to spend time with my patients and getting to know who they are.

Dr. Sarosiek wants to learn more about her patients and who they are beyond the diagnosis so that she can treat them as a whole person and not just the disease specifically, allowing her to understand how different options might impact them and their quality of life.
Stephanie Chuang

Jason: I’m confident that there aren’t many doctors in the world who know this disease and the science around this disease as well as Dr. Sarosiek, but she also knows me well and that’s critical in the doctor-patient relationship.

Stephanie: I love that you’re both highlighting that this is a long-term relationship that’s very different than other cancers. We talk a lot about survivorship in other spaces, but this is an ongoing conversation. You know that Dr. Sarosiek knows her stuff and she’s at the top of her game. You talked about the anxiety and mental load that you had to work through daily.

The difference is Dr. Sarosiek wants to learn more about her patients and who they are beyond the diagnosis so that she can treat them as a whole person and not just the disease specifically, allowing her to understand how different options might impact them and their quality of life. That’s such an amazing thing that’s happening and I do hope that patients, care partners, and physicians will take that away.

Is there anything else you want to mention that is important in the context of having patients and physicians be partners? Are there misconceptions? Are there any other things that people are missing that you think would benefit them?

Dr. Sarosiek: It’s important to find a physician who is open to learning and is willing to work with you within your space. We’re all different people, as we all know. We are born into families that have different personalities and we learn to work together. Sometimes, we find friends along the way who are more like family because they’re people you relate to. You want to find a physician like that who can meet you in your space.

Sometimes, you have different personality issues and maybe you want to find a different doctor who can work with you in a way that would make you most comfortable with your disease. It’s worth getting second opinions or meeting other physicians and finding someone that you feel can be your partner through the journey. I know I fail in some ways, but I try my best to be a partner with my patients and hopefully, patients can find someone who can do that with them.

Jason: Take care of your health, both physically and mentally. Join support groups. If you have Waldenstrom’s, go to the IWMF.com. Ask your doctor lots of questions. Don’t be afraid to seek multiple opinions. Find a doctor who you’re comfortable with and who knows this disease inside and out, if possible, or at least ask your doctor to be in touch with the doctor who knows this disease inside and out.

Waldenström’s Clinical Trials

Stephanie: Dr. Sarosiek, do you ever talk about clinical trials with your patients? It’s a huge topic and very important in a space where there’s so much development. What is your mindset in terms of the research? How and when do you bring them up to patients?

Dr. Sarosiek: I’m a huge advocate for clinical trials and in general, especially in academic institutions, we tend to use clinical trials a lot to be able to offer novel therapies to patients. As Jason mentioned, he’ll come in and ask about novel therapies, so often it comes up in conversation with patients when they ask what’s new and we’ll talk about clinical trials.

If there is a trial available that a patient would qualify for, I always bring it up as a potential option. Some patients can’t participate because of logistics and not being close to a center with clinical trials, but I will always bring it up because I think it’s the best way that we can move the field forward. If a patient is eligible for a trial, it will certainly come up in conversation with me.

There are so many options that doctors are trying to figure out the right order of treatments, which one is more effective and safer than the other, and the only way we can get the answers to those questions is by patients taking part in clinical trials.
Jason Euzukonis

Jason: I’m still responding well, so I’m not there yet. But as Dr. Sarosiek mentioned, I do make it known that I’m very much open to a clinical trial if and when the time comes.

The good news is that there are so many new options now and they’re making advances every day. The challenge is there are so many options that doctors are trying to figure out the right order of treatments, which one is more effective and safer than the other, and the only way we can get the answers to those questions is by patients taking part in clinical trials.

A lot of people think that with clinical trials, they’re guinea pigs, but no. There are a lot of great options and the doctors are looking to get answers.

Stephanie: From the patient’s perspective, what would be your major considerations on whether you would want to go on a particular trial?

Jason: I’d be very interested in a clinical trial that combines agents that aren’t chemotherapy and will eventually be able to give me a break from treatment. There’s a lot of progress being made on that front. I know that’s a priority for a lot of the centers and doctors out there.

At the end of the day, it’s a drug… Each one of us is different, so I don’t know how it’s going to impact me long-term
Jason Euzukonis

Stephanie: That makes perfect sense, for sure. But if we could dive in, can you share more about what it is that’s coming up for you? Chemotherapy sounds like it’s the side effects and quality of life. With time off treatment, who doesn’t want a break? Can you describe why that’s so important for you and what’s driven you to that point?

Jason: With the targeted therapy that I’m on now, there doesn’t seem to be a lot of risk long-term, but it’s still relatively new and we don’t know that. I also know that these treatments aren’t cheap and pretty taxing on the healthcare system to remain on these things, so I know that’s a consideration.

At the end of the day, it’s a drug. There are no free rides when it comes to these medicines. Each one of us is different, so I don’t know how it’s going to impact me long-term if I stay on this for 10, 15, or 20 years. I likely won’t be on it for 20 years, don’t get me wrong. But as we say in the Waldenström’s community, if you know one Waldenström’s patient, you know one Waldenström’s patient. That can be applied to a lot of different cancers, but the bottom line is I don’t know the long-term ramifications of continuous therapy, so it would be nice to not be on a drug for a period of time.

Stephanie: Dr. Sarosiek, is there anything else that you think would be helpful for patients to understand both in terms of guidance for them and questions that they can ask that might be helpful?

Dr. Sarosiek: Some concerns that patients bring up when they hear clinical trials include: Are you testing something that you don’t know anything about? Am I going to get a placebo so I won’t be getting any treatment for my cancer? Does this mean that this is the last option for me, that I’m going to be dying with this cancer soon?”

It’s important for patients to know that that’s not the case. Often, we have many trials for patients who have never been treated before and this is going to be their first treatment in decades of life that they’ll live with Waldenström’s. It’s important for patients to know that clinical trials are a way to get novel therapies.

While clinical trials may not be right for everybody, it’s great to have the conversation so people can choose what is right for them.
Stephanie Chuang

Currently, we have a clinical trial that uses two oral therapies that we know independently work very well in Waldenström’s and we use them as the standard of care. But the trial is trying those two together so that you can use them for a limited amount of time and get a better response. It’s a way to get novel therapies or advanced therapies that otherwise wouldn’t be available as a standard of care.

Stephanie: Sometimes you hear people say, “Tomorrow’s treatment today.” While clinical trials may not be right for everybody, it’s great to have the conversation so people can choose what is right for them.

Conclusion

Stephanie: Thank you, Dr. Sarosiek and Jason, for joining this conversation. You highlighted a lot of the nuances that come up in the conversations between the physicians and the patients. You’re a great example of how partnership can work well here, so thank you both so much.

Tiffany: Thank you, Jason, Dr. Sarosiek, and Stephanie for such a great discussion. It’s so important to be empowered and to lean into communication so that you and your caregivers can make informed decisions about your care.

Thank you again to our sponsor, Pharmacyclics, an AbbVie company, for its support of our independent patient program. Thank you to The Leukemia & Lymphoma Society (LLS). Check out their Information Resource Center, which provides free one-on-one support. Thank you to the International Waldenstrom’s Macroglobulinemia Foundation (IWMF) which has over 60 peer support groups worldwide where they share experiences, discuss concerns, and exchange information.

Special thanks to The Leukemia & Lymphoma Society and the International Waldenstrom’s Macroglobulinemia Foundation for their partnership.

Thank you to Pharmacyclics, an AbbVie company, for its support of our patient education program. The Patient Story retains full editorial control over all content

Waldenstrom’s Macroglobulinemia Patient Stories

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Tags medical experts, non-hodgkin lymphoma event, Waldenström event

Non-Hodgkin Lymphoma Patient Events

Living with the Mental Health Aspects of Waldenström Macroglobulinemia (WM)

Post author By Katrina Villareal
Post date July 25, 2024
No Comments on Living with the Mental Health Aspects of Waldenström Macroglobulinemia (WM)

July 25, 2024

Living with the Mental Health Aspects of Waldenström Macroglobulinemia (WM)

Edited by:
Katrina Villareal

Living with the Mental Health Aspects of Waldenström Macroglobulinemia (WM)

Hosted by The Patient Story

Listen in as experts dive deep into the crucial topics of “Watch and Wait” and mental health. You’ll gain insights that could transform your understanding and approach to your treatment or the treatment of a loved one. Learn about current treatments and clinical trials.

Watch the Replay

WM patient advocate Pete DeNardis leads the discussion as two experts in the field of cancer care, Dr. Jonas Paludo from the Mayo Clinic and Dr. Shayna Sarosiek from Dana-Farber Cancer Institute, dive deep into the crucial topics of watch and wait and mental health. Gain insights that could transform your understanding and approach to cancer treatment.

Thank you to The Leukemia & Lymphoma Society for their support of our patient education program. The Patient Story retains full editorial control over all content

We would also like to thank the International Waldenstrom’s Macroglobulinemia Foundation for their partnership.

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Introduction

Stephanie Chuang, The Patient Story Founder

Stephanie Chuang: I’m the founder of The Patient Story after my non-Hodgkin lymphoma diagnosis. The goal of our platform is to help patients, care partners, and anyone in the support circle navigate life after a diagnosis. The Patient Story does this primarily through in-depth patient stories and educational programs.

It’s especially important in a space like Waldenstrom’s where patients and families are told many times that there will be no immediate treatment and that they’ll enter a period known by most as watch and wait. This discussion is all about support and getting through something as difficult as hearing that.

We want to thank The Leukemia & Lymphoma Society for supporting this independent educational program, which helps us host more of these and always for free for our audience. The LSS has invested over $1.5 billion in blood cancer research and provides free educational resources and support, like information specialists on hand who provide one-on-one support on everything from questions about treatment to social and financial challenges.

Thank you also to our promotional partner, the International Waldenstrom’s Macroglobulinemia Foundation (IWMF), which also provides free resources specifically to the Waldenström’s community, from wellness resources to peer-to-peer support.

While we hope you walk away with more knowledge, this discussion is not meant to be a substitute for medical advice. Please speak with your medical team about important decisions.

Stephanie: I’m lucky to know Pete DeNardis, who has been an incredible part of the IWMF as someone who was diagnosed with Waldenström’s and an advocate. Pete, thank you for taking the time.

Pete DeNardis, WM Patient Advocate

Pete DeNardis: I’m a WM patient myself. I was diagnosed in 2003 at the age of 43. I’ve been a volunteer for the International Waldenstrom’s Macroglobulinemia Foundation (IWMF) since 2005 and have been a board member for a long time and currently serving as the chair of the board of trustees.

I’ve been in multiple periods of treatment and watch and wait, so I understand the physical and mental impact of Waldenstrom’s when you’re navigating through those various periods.

Dr. Jonas Paludo, Hematologist-Oncologist

Pete: Dr. Jonas Paludo is a hematologist-oncologist at the Mayo Clinic and part of their lymphoma group, including Waldenstrom’s Macroglobulinemia. He also investigates the effectiveness of various treatments for WM, examines the outcomes of patients with the disease, and studies the genetic mechanisms associated with the development of this malignancy. Dr. Paludo, what drew you to becoming a doctor?

Dr. Jonas Paludo: I had the first-hand opportunity to experience the difference that a good doctor can make in the lives of patients and families when they go through a cancer diagnosis. I thought my calling was to help patients and people when they’re struggling with a difficult diagnosis. I always thought I was going to be an electric engineer because I enjoyed math and physics. I changed my mind, applied to medical school, and never looked back.

Dr. Shayna Sarosiek, Hematologist-Oncologist

Pete: Dr. Shayna Sarosiek is a hematologist-oncologist at Dana-Farber Cancer Institute, specifically at The Bing Center for Waldenström’s Macroglobulinemia, the largest center in the world dedicated to the study and development of new targeted therapies for Waldenstrom’s. She’s involved in clinical research focused on the use of immunotherapies and antibody treatments. She also sees patients on a day-to-day basis and deals with patients who have both WM and amyloidosis. Dr. Sarosiek, what drew you to becoming a doctor?

Dr. Shayna Sarosiek: I was very young when I decided I wanted to be a doctor. I was interested in biology. Instead of pictures of bands on my bedroom wall, I had a poster of every system in the body. I had anatomy setups around my room so that I could study the human body. I also had a close family member with cancer when I was a child and that’s what drew me to cancer care specifically. I’m very happy that I’m in this field.

Understanding Waldenström Macroglobulinemia

What is Waldenstrom’s Macroglobulinemia?

Pete: Let’s talk about understanding WM. Dr. Paludo, can you describe Waldenstrom’s Macroglobulinemia?

Dr. Paludo: Waldenstrom’s is a type of lymphoma. There are many different types of lymphomas, several dozen to be honest, and they behave in different ways. They come from different cell types and different classifications. Waldenstrom’s belongs to the non-Hodgkin’s lymphoma category, which has several dozen different lymphoma subtypes.

Waldenstrom is also sometimes called lymphoplasmacytic lymphoma as it involves the bone marrow of the patients. This type of cancer comes from B cells or B lymphocytes that are part of our immune system. For reasons that we don’t understand exactly why or how, when one of those normal B cells or B lymphocytes becomes a cancer cell, it starts to grow and take up space in the bone marrow.

But it does grow very slowly and that’s why we also classify Waldenstrom’s as indolent lymphoma or slow-growing lymphoma. It’s an indolent lymphoma that comes from B cells and belongs to the category of non-Hodgkin’s lymphoma.

Waldenstrom’s is very unique in that not only is the cancer cell in the bone marrow, but these cancer cells can go to other organs, like lymph nodes and the spleen. It also produces a protein called IgM protein that can circulate in the blood and can cause different types of symptoms along the way.

Most Common Symptoms of Waldenstrom’s Macroglobulinemia

Pete: Dr. Sarosiek, we know that WM is rare as Dr. Paludo just mentioned, but what are common ways people find out that they have Waldenstrom’s and what are the symptoms when they’re diagnosed?

Dr. Sarosiek: Patients find out that they have Waldenstrom’s in a multitude of different ways, but a lot of patients don’t have any symptoms and it’s picked up incidentally when they have other testing done.

One of the most common things I see in my clinic is that during normal primary care follow-up, patients are noted to have a high total protein on routine blood tests. The IgM antibody that you heard from Dr. Paludo is made in Waldenstrom’s and is a type of protein. Often, the protein level in a patient’s blood might be high if they’re making a lot of IgM.

For some patients, it’s picked up because they had an MRI done for other reasons and the bone marrow looks active or looks like it has some changes.

Some patients are noted to have anemia in routine labs. Even if they don’t have symptoms, their doctor notices that their hemoglobin or red blood cell level is a little below normal. Sometimes it’s picked up incidentally; other times, patients have symptoms.

The most common symptoms we see with Waldenstrom’s, both at the time of diagnosis and the time of treatment, are symptoms of anemia. Some patients notice that they’re feeling tired, weak, or getting short of breath doing their usual activities. More commonly, patients attribute their symptoms to aging when in reality, it’s because they’ve developed anemia and their disease has progressed. When symptoms of anemia are present, it might be a cause for a workup.

Another symptom that isn’t as common is hyperviscosity or thickened blood. They might have frequent nosebleeds or visual changes and their eye doctor notices some bleeding in the blood vessels in the back of the eye. Sometimes, they might have symptoms from thickened blood, but it can be a variety of different things that happen and lead to the diagnosis.

Pete: My diagnosis came as a result of a blood test I had for another reason. The doctor said I had elevated protein levels and I thought I needed to cut back on my red meat to lower the protein level. I didn’t know anything about it.

Watch and Wait Process

What is Watch and Wait?

Pete: I’ve had Waldenstrom’s for almost 20 years now, so the definition of watch and wait has evolved and continues to evolve depending on the stage of the disease that I’m at. Initially, it was to see how well the treatments were working but in between treatment periods, watch and wait turns more into a waiting process.

Each time there’s a blood test, you have a little bit of anxiety as to what the results will be. I learned over the years to watch the trends and not focus so much on one blip up or down and that’s helped me relax a little bit. It’s not easy and it can lead to a lot of anxiety on the part of the patient and the caregiver. It’s important to watch those trends and stay in close contact with your doctor.

From the doctor’s perspective, can you describe the watch and wait process?

Dr. Paludo: The watch-and-wait process is the time between diagnosis and when we have to do something or start treatment. It’s the period when you’re monitoring the disease and waiting for symptoms or changes that would require treatment.

Pete, as you mentioned, you were diagnosed when they found an abnormal protein level in your blood. I’m assuming you weren’t having any symptoms at that time and that’s the case for a good number of patients diagnosed with Waldenstrom’s. As Dr. Sarosiek mentioned, a patient could have a test done that eventually led to a Waldenstrom’s diagnosis, but they were feeling well and not having symptoms at that time. Because Waldenstrom’s is a very slow-growing disease, we know that a lot of patients can go for many, many years without having any symptoms from this disease.

During watch and wait, we are keeping an eye on things and monitoring labs, like the trends of the protein level, hemoglobin, and platelet count. Some people call it active monitoring because we’re doing frequent follow-ups with labs and doctor visits, looking for symptoms or changes that would suggest treatment has to be done.

Dr. Sarosiek: I agree with everything you said. Generally, the process of watch and wait, active surveillance, or active monitoring is keeping an eye on a few key things, most importantly patient symptoms. Often, symptoms will align with a patient’s lab results or physical exam, but sometimes they don’t.

We’re trying to maintain a patient’s quality of life, so during that period, we’re monitoring the patient’s symptoms and blood work because if there are changes that are concerning or could become dangerous, then that’s the other thing we want to watch. Sometimes patients develop enlarged lymph nodes or an enlarged spleen.

Pete, you hit the nail on the head by saying that watching the trend is important because there can be some natural fluctuations. The IgM might increase or decrease a little bit. If a patient had a viral infection, it could affect the lab results. It’s more about the trend over the course of time rather than one lab value.

The same thing is true for symptoms. If a patient is sick, they might feel more fatigued but feel better the following week. We like to see the trend over some time during watch and wait.

Pete: I used to keep a spreadsheet to track the trends. My doctor used to expect that and wait for me to hand the sheet that I put together so we could look at the trends together. Thanks to technological advancements, I don’t have to do that anymore.

How Often Do Patients See Their Doctors?

Pete: When someone is in watch and wait, is there a standard frequency of doing blood tests or does it vary?

Dr. Sarosiek: It varies from patient to patient. On average for most of my patients, we follow up every three months. A lot of patients have a very slow progression of the disease, but it depends on the patient. Sometimes we have patients who have been stable for years, so we might extend that follow-up to align with what we know is happening with their disease.

In the beginning, patients are adjusting to their diagnosis and learning more about the disease and probably have more questions, so more frequent follow-up sometimes happens. Even if we don’t feel like we need it from a lab perspective, more frequent follow-ups allow us to check in with patients and allow them to ask questions and get used to having this disease. It can be important from a mental health perspective.

I don’t want any of my patients to be at home thinking they wanted to check at two months and spending the last month of the three-month period waiting anxiously. Sometimes, we’ll check in a little more frequently, especially around the time of a new diagnosis, but on average, it’s every three months.

Dr. Paludo: We have a very similar schedule. We tend to follow up with watch-and-wait patients approximately every three months, especially at the beginning as we have a better idea of how the disease is changing and what the trends look like initially. Assuming that everything is stable or mostly stable, then we start to space those visits about every six months, sometimes even a little longer depending on the patient, what they might be experiencing, and where they’re coming from.

Pete: I hadn’t considered the mental aspect behind the timing. You’re not just focused on the physical aspects of what the patient’s going through but also mentally. Looking back, I guess that did happen to me also. I appreciate that that’s part of the art of being a doctor as it’s not just science, so I compliment both of you on your ability to do that.

Top Tips for Getting Through Watch and Wait

Pete: Are there mental health issues surrounding being on watch and wait? I’ve been in various phases of watch and wait as I’ve been through multiple rounds of treatment. Fortunately, I have a strong support network with my wife, my kids, and my family. Through my involvement with the IWMF, I’ve talked to a lot of patients and not every patient has that support. Patient support is important. Talking to other patients and being part of a support group helps.

All that being said, there are still periods where you have rough patches. You don’t know what’s going to happen next and you’re either anxious about where your disease is heading or when the other shoe is going to drop. It’s important to take advantage of your support network, talk to your doctors, and seek mental help if you need it. There’s no shame in seeking help. You’re to be commended for doing so because you’re taking active control of your disease and your condition.

Doctors, what are the most common questions and concerns you get from your patients when it comes to watching and waiting? What are the top tips you provide them when they’re going through that process?

Dr. Sarosiek: Mentally, for a patient who has cancer, something changes in terms of the way that you think about new symptoms that come up. If you don’t have cancer or haven’t had a major medical issue and you have a little bit of back pain, you might think you hurt your back and move on with your day. But once you have an underlying diagnosis, you start to interpret symptoms differently. I see that very commonly and it’s very normal for that to happen with patients with Waldenstrom’s and other cancers. You start to see your symptoms through a new eye.

From my perspective, it’s important to have an open line of communication with your provider to relieve your anxiety, especially at the beginning when you don’t know exactly what to expect. Many patients will reach out to me and say, “I know this probably isn’t related, but I want to reassure myself. I have this new pain or new symptom. Do you think it’s part of the Waldenstrom’s or something bigger to worry about?”

The important part of active monitoring and surveillance is having that open line of communication to be able to ask questions to put into the context of your Waldenstrom’s, which otherwise you might have ignored. Don’t be afraid to ask to allay your anxieties and be able to enjoy your quality of life without having to worry every day about the small things.

Dr. Paludo: Another common thing is being concerned about watching and waiting. A patient is told they have Waldenstrom’s and now that patient is told that we’re not going to do anything about it. I discuss the rationale and the quality of life component, and reinforce that we do not forget about it. We’re going to have frequent regular time points to check and monitor things.

As Dr. Sarosiek mentioned, have an open line of communication and tell the patients to ask questions. If you have any concerns, contact your doctor to discuss them because there could be a great deal of anxiety, especially at the beginning as patients are getting used to living with Waldenstrom’s and not starting treatment right away.

Dr. Sarosiek: It’s important to find support and resources that work best for you. A lot of people have families and friends to support them and though some patients don’t have that, they might find support in other places. A lot of institutions have great social work care or psycho-social teams that can help deal with anxieties and mental health issues surrounding a cancer diagnosis. There are resources like the IWMF.

Some patients benefit from talking with other patients and being active participants on online forums. Other patients may find that overwhelming and don’t want to necessarily get all that information in the beginning. They might want to learn on their own through patient-directed education. Patients should use the resources available to them and find support in ways that they find most helpful. They don’t need to feel like they have to use everything available. It’s about finding a balance of what they feel most comfortable in.

Pete: Those are very insightful responses and hopefully, people find some help and guidance. I’ve been on this journey for a long time and I’m at a point where my disease is behaving itself and has been so for a while. I’m at the point where I’m worried more about my children and my grandchildren. If they have a bruise or some strange thing, I think, Could it be Waldenstrom’s or something related? It’s a different level of anxiety and I hate to admit that, but it’s true.

What Factors Impact the Watch-and-Wait Process?

Pete: Do different patient profiles, like age, gender, geographic location, and other considerations, impact how you work with patients on the watch-and-wait process? Does it matter where they are in terms of what type of patient they are or even where they live?

Dr. Paludo: They certainly influence the approach to a certain degree. I think about the interaction of Waldenstrom’s and other medical problems patients may have. For example, am I concerned about a potential kidney problem in a specific patient because they may have other risk factors for kidney problems or am I concerned about something else, like a big spleen?

Depending on how a patient presents, depending on what other medical problems they may have that could interfere with Waldenstrom’s, I may look at that and adjust a little bit of how we watch and wait. At the end of the day, it’s all about the trends in their labs and how the patient is feeling, but depending on other medical issues they may have, we may keep a closer eye or adjust the watch and wait period.

Dr. Sarosiek: You mentioned urban versus rural in terms of where a patient resides. That also can impact continued care. Dr. Paludo and I are both very fortunate to work at larger academic centers where we get to have more experience with specific diseases. If a patient is in a rural area, their local doctor might not see as much Waldenstrom’s.

Connecting with someone at a larger academic center could be helpful in terms of continuing to follow the disease. I work with a lot of local oncologists in terms of developing watch-and-wait plans and seeing what they’re comfortable with and what the patient is comfortable with. In some settings, in terms of developing a plan for active monitoring, it’s not just me and the patient, but it’s me, the patient, and their local oncologist.

Approaching the Mental Challenges of Watch and Wait

Pete: If a patient’s going through a mentally difficult time, do you do anything different in the treatment? How do you work through that process when they’re on watch and wait and they’re particularly anxious?

Dr. Paludo: A component of our discussions at patient visits is talking about stressors and anxiety symptoms. I tend to meet more often with patients who may have a higher anxiety level, which is not uncommon. The shorter intervals between appointments allow us to monitor labs a little closer. I found that usually helps a lot with those patients.

More important than that, we’re fortunate to have a very large group of psychologists and psychiatrists at Mayo who are experts in cancer patients. We tend to make a referral earlier in the disease process, so patients would have other professionals to speak with. We also share the different resources available outside of our institution.

Dr. Sarosiek: Part of the beauty of Waldenstrom’s is since our patients do well and we get to know them very well, we can have open conversations when they’re feeling more anxious or when they would like to be connected to more support systems. Based on our conversations, if they have anxiety about specific things happening with the disease, we can connect them to resources or see them more often.

I have many patients who I would feel comfortable seeing less often from a medical perspective, but the mental health perspective is also very important, so I continue to follow them a little bit more closely to manage that part. Keeping both mental and physical health in mind is an important part of the follow-up.

Importance of WM Caregivers

Pete: I’m a patient, but I also happen to be a caregiver. My wife has a related blood cancer and it’s strange to find myself wearing the caregiver hat. Do you work with caregivers in this regard? Do you have advice for them, specifically when a patient is going through the watch and wait period?

Dr. Sarosiek: Caregivers carry a big portion of the burden of the disease. We have a great social work team and they’re quite wonderful in terms of working with the families and seeing what needs the caregiver or the family member might have.

A patient needs to bring someone to an appointment. I always try to address if the family member or caregiver has other questions too because they’re quite involved. They’re often an extra set of ears, help quell anxieties the patient may have later, and can report back information that might have been too overwhelming at the time of the appointment.

A key part of caring for the patient during a visit is whoever they bring along is someone important and involved in their care, so I make sure their questions are answered too.

Dr. Paludo: Caregivers are very important, especially in Waldenstrom’s. I include them and check with them because they might be experiencing different types of anxieties and concerns. Caregivers are also looking for other things that we may not discuss, like family, work, and finances, which are important topics that don’t take center stage in the discussions but are important to address. They provide a lot of support to the patient, so it’s important to make sure they’re supported as well.

Pete: Having to wear the caregiver hat, I had a newfound respect for what my wife had been through for years. In some respects, it’s harder than being the patient. I have a lot of appreciation for all the caregivers and physicians who are working with us, trying to help during these difficult periods, whether we’re in treatment or watch and wait.

Latest Treatment Options for Waldenström Macroglobulinemia

Pete: We want to touch on the current treatment landscape or what treatment is like for Waldenstrom’s patients and where we might be headed. When I was diagnosed in 2003, Rituxan (rituximab) was a fairly new treatment paradigm and there were concerns about whether it was safe to take long-term. We know much better now, but back then, we weren’t sure.

One of my initial treatments, which was fludarabine, cytoxan, and rituximab, isn’t used anymore. I have an unusual disease course, so I’ve had different courses of treatment. I’m currently on a BTK inhibitor, which is working well for me. Because I have a different manifestation of the disease, I also get monthly IVIG.

Every patient is different. What are the current treatment options for patients? If they’re newly diagnosed, what do they have to look forward to in terms of options?

Dr. Sarosiek: Over time, if a patient’s disease progresses or comes back, we have a lot of different treatment options, which is wonderful. Most commonly for a treatment-naïve patient, which means they’ve never had treatment for their Waldenstrom’s, we think of two big categories for first-line therapies.

We often think about BTK inhibitors, like zanubrutinib, ibrutinib, and acalabrutinib. There’s also chemotherapy with rituximab. There are quite a few different chemotherapies. Fludarabine is one of the older ones, but we don’t use that as frequently anymore. In the US, we often use bendamustine with rituximab, but there’s also another chemo called Cytoxan (cyclophosphamide) that can be combined with rituximab. I would say the two most common are rituximab with chemotherapy or BTK inhibitor.

There is another class of drugs called proteasome inhibitors, like bortezomib, or related drugs that we can also use. I tend to use those in younger patients. A lot of patients with Waldenstrom’s have neuropathy, so we don’t use those drugs as frequently because neuropathy can happen with that group of drugs.

There are other oral therapies like venetoclax or the newer BTK inhibitor ibrutinib. There are also different options available as well for patients who have had their disease come back. Clinical trials are also an option, which is the way that we move therapies forward.

We have so many different options and we’re lucky enough to have a conversation with our patients about what might fit their disease and their preferences. Some patients don’t want to take a pill every day, some people don’t want chemotherapy. In most cases, we can tailor therapies to patient preferences and what we might expect to be best for their disease.

Pete: Dr. Paludo, can you talk about fixed-duration therapy versus continuous therapy? What are the differences and what are the advantages and disadvantages?

Dr. Paludo: As Dr. Sarosiek mentioned, we are very lucky to have so many different options, a lot more options than we had 20 years ago, Pete, when you were diagnosed. We can divide the different treatments into fixed-duration treatments and continuous treatments.

With fixed-duration treatment, there’s a start date and an end date. Those include chemoimmunotherapy regimens, like bendamustine and rituximab, and cyclophosphamide, rituximab, and steroids. Treatment is usually given at frequent intervals for a specific amount of time.

Continuous treatments include newer drugs, like targeted therapy. They have a start date but they don’t have a predefined end date. Treatment is continued for as long as it’s working and not causing side effects that require us to stop treatment. That’s where BTK inhibitors come into play, like the one you’re currently taking, Pete. You’re going to continue on it for as long as it’s working and not causing enough side effects to impact your quality of life to justify stopping treatment.

We usually think of fixed-duration treatments as having more side effects at a higher intensity and that’s why they’re given for a certain duration. Continuous therapy tends to have a lower level of side effects so patients can continue on treatment for a long time. Patients can choose what fits them better, whether it’s fixed-duration treatment or continuous treatment.

Promising Clinical Trials in Waldenström Macroglobulinemia

Pete: What’s always interested me was when it was time to decide, the doctor would tell me my options and ask which one I wanted. We’re fortunate as WM patients to have so many different options available regarding treatment, which is a testament to the amazing research being done to move the ball forward.

We look forward to the newer agents down the road and better treatments in the future for improved quality of life for all. With that in mind and looking at the future of treatments, what’s exciting at this point? What are some of the studies you’re most interested in, and why should patients and care partners be interested in participating in a clinical trial specifically?

Dr. Sarosiek: Clinical trials are how we move forward in the field. We’re in an exciting time with the number of clinical trials that we have available for Waldenstrom’s and there are quite a few that I’m interested in. When I bring up Waldenstrom’s clinical trials to patients, there’s an initial hesitance because of concern that a patient would get a placebo and not get treatment for their disease.

An important thing to remember is that we’re certainly treating our patients and what the trials do is try some of the treatments in a new way. Maybe a specific treatment was effective for other types of lymphomas and we’re seeing if it would work in Waldenstrom’s or if a combination of two effective therapies has been used before, we’re studying if we could use both for a shorter duration.

Patients should always be open to asking questions about clinical trials if they have any hesitancy, are worried that they’re not going to get active therapy, or are worried about side effects. Some trials offer an opportunity to get something new and different that might be more effective based on some encouraging background data.

We have a couple of ongoing clinical trials for patients with Waldenstrom’s, a precursor of Waldenstrom’s, or who don’t quite meet the criteria for Waldenstrom’s but have an abnormal IgM antibody. Patients can develop neuropathy that affects the lining of the nerves We have a clinical trial open for exploring that neuropathy differently by treating the underlying abnormal IgM and then following the patient’s nerve damage over time and hoping to find something that’s effective. That trial used rituximab with acalabrutinib to see if that regimen can protect the patient’s nerves.

Another clinical trial we have is using a drug called loncastuximab tesirine, an antibody that delivers a toxin to the site where the abnormal cells are, and that’s a limited-time therapy of six months. The trial is ongoing and it’s for patients who have had at least two other types of therapy in the past.

We have another clinical trial that’s using two oral therapies, venetoclax and pirtobrutinib. We know both of those drugs are effective in Waldenstrom’s on their own, but this trial is using a combination of both for two years in hopes of deepening or getting better control of Waldenstrom’s, and also in hopes of allowing patients to come off treatment after two years.

I could go on and on about many other clinical trials available for Waldenstrom’s, but those are some of the more exciting ones that we’re talking about. Dr. Paludo, do you have other thoughts about clinical trials for patients with Waldenstrom’s?

Dr. Paludo: Participating in clinical trials is very important for patients and the community. Participating helps patients have new and other different treatment options available and that’s how we got where we are right now. Often, the first patients to benefit from a new treatment are the ones in the clinical trials, so the ones in the ibrutinib clinical trial are the first ones to benefit from that drug and become the standard of care. Hopefully, loncastuximab will become part of the standard treatment in those patients in clinical trials who are the first ones to benefit from that.

There are several clinical trials available for Waldenstrom’s. There are a few that are very interesting and seeing results and I hope they will be available soon. There are some trials comparing differences in the treatment regimens and classes that we were talking about earlier, trying to see if one is better than the other, or which situation to use one or the other.

We don’t have the specific trials yet, but I’m looking forward to seeing what novel types of immunotherapy drugs will bring to Waldenstrom’s field. I’ll be very curious to see what we’re going to find with bispecific antibodies in Waldenstrom’s. We have seen excellent results in different lymphomas similar to Waldenstrom’s and I’m hoping that we’ll have clinical trials soon that will be able to investigate if those treatments are helpful in Waldenstrom’s as well.

Pete: With the clinical trials, what it comes down to is that it’s an opportunity to be on the cutting edge in a sense of what treatments are out there and find something that will work well for you.

Correct me if I’m wrong, but the thing that people should take away is that if you are in a position where you need treatment, you will get treatment whether it’s from a clinical trial drug or another treatment.

Dr. Sarosiek: That’s correct. No matter what, patients need to understand that if their disease needs treatment, they will get treatment for their disease. If they qualify for a trial and want to participate, they can do that. We would never advocate for a clinical trial that wouldn’t provide the treatment that the patient needed.

Dr. Paludo: We also look for clinical trials that make sense for the patient. If the patient needs treatment, do the new drugs in clinical trials make sense for that patient or do they have potential side effects that will cause more trouble? If so, we would avoid those clinical trials. When looking for a clinical trial or treatment, it has to fit the patient.

Pete: Patients could always ask if there’s a clinical trial that they can participate in. Depending on where they’re located, they may have to reach out to people, like at Mayo Clinic and Dana-Farber, to see if there are trials available. They may have to travel, but they have an option. I encourage patients to always look at clinical trials and see if any of them are the right fit for them because you help yourself and you also help other Waldenstrom patients in the process. It’s a win-win situation.

Final Takeaways

Pete: Dr. Paludo, as a final message to any patient who’s in watch and wait, what would you tell them to alleviate their anxiety and mentally dealing with being on watch and wait?

Dr. Paludo: I always try to convey to my patients that being able to watch and wait is very positive. It’s an excellent situation to be in where you don’t need treatment. You want to kick that can down the road only when you have symptoms. Work with your hematologist. You need to follow up. Despite all the anxiety that comes with it, being on watch and wait is an excellent position to be in.

Dr. Sarosiek: Watch and wait or active monitoring is a personalized process. It can be adjusted and will be adjusted as needed for each patient in terms of what to follow up on and how often to follow up. I encourage everyone to find a physician who they’re comfortable with, who they can go through that process with, and who they feel is supporting them.

Pete: As a patient myself, I always appreciate my doctor and the advice that he gives me. Having a good working relationship with your doctor and having your caregiver involved is important, so make sure to have someone come to your appointments with you.

It’s okay to let your emotions out. Be upset, yell, and cry if you need to. Don’t hold it in. But if you find that that doesn’t help, reach out to your doctor, to your care professionals, to social workers, and to whatever support is available to you. Take advantage of that support network. You don’t have to suffer alone. There are people who can help you through the process.

The Leukemia & Lymphoma Society

Stephanie: Before we wrap up this discussion, I’d like to spend time on a very great hands-on resource at your fingertips, The LLS’ Information Resource Center, which features specialists who work with people one-on-one. Joining us is Jennifer Wilson, a senior information specialist with The LLS. Jennifer, can you share the basics of how you are helping patients and care partners in general?

Jennifer Wilson: We want to make sure that whether someone calls us for the first time or the 40th time that we hear what they need. Sometimes people can identify it, but sometimes they can’t. We want to make sure that they have good, up-to-date information on their disease and treatment options and how to get support because we know that what your needs are from day one can be very different over time.

Stephanie: For Waldenstrom’s patients and care partners in particular, what are some of the common questions and topics that come up, and how do you help the people who approach you?

Jennifer: When someone is newly diagnosed, oftentimes they may be told that Waldenstrom’s is a chronic illness so they’re going to watch and wait, but to hearing that can be completely overwhelming. We prefer to use the phrase “active surveillance” because that indicates that they’re keeping an eye on things. They’re not waiting to see what happens. They’re very deliberately monitoring to manage the disease.

Then we look at what supports are available. We have the First Connection^® Program, a peer-to-peer program so that someone with Waldenstrom’s would have the opportunity to speak with someone else who has been in watch and wait to find out what that felt like and how to communicate with their friends and family.

We have an online non-Hodkin lymphoma chat. For the caregiver, we have a caregivers chat. We have a community with a designated group for Waldenstrom’s patients and family members. We have local support groups and education programs because knowing about one’s disease and treatment options is essential.

A lot of times, we help patients figure out what they need to ask at their next appointment to ensure that when they leave the doctor’s office, their top five questions have been answered.

Conclusion

Pete: Thank you again to both of you, Drs. Paludo and Sarosiek. We look forward to future discussions and further advancements in the clinical trials and the future of Waldenstrom’s research.

Stephanie: Thank you, Jennifer, for the work that you’re doing to help patients and families everywhere, including those who are dealing with Waldenstrom’s. We want to thank both The LLS and the IWMF for being incredible partners.

Thank you, Pete, for leading an incredible discussion, spending the time, and your advocacy in general. You have made an immeasurable impact in this space.

Thank you, Dr. Sarosiek and Dr. Paludo, for the work that you’re doing both in the clinic with the people you’re helping directly in Waldenstrom’s and beyond, and also all the research that you’ve contributed to lifting the possibilities for everybody with Waldenstrom’s.

I hope that this discussion was helpful and that you walk away feeling more confident. We hope to see you at a future program.

If you read and/or watched our program, we encourage you to take our program survey to help us improve future programs and answer your questions.

Special thanks again to The Leukemia & Lymphoma Society for its support of our independent patient education content and the International Waldenstrom’s Macroglobulinemia Foundation for their partnership. The Patient Story retains full editorial control.

More Medical Expert Interviews

Tags non-hodgkin lymphoma event, Waldenström event, Waldenström Macroglobulinemia

Introduction

Tiffany Drummond, Patient Advocate

Peter DeNardis, IWMF Chair Emeritus

Lisa Ramirez, Patient Advocate

Proactively Participating in Your Care

Signs and Symptoms

Insurance Concerns

Getting a Second Opinion

Knowing Your Options

Treatment Approaches to WM

I’m Newly Diagnosed. What Now?

Deciding to Stay Local or Travel for Your Care

Managing Your Life with WM

WM Treatment Options

The Emotional Impact of a WM Diagnosis

Lifestyle Changes in the Face of a WM Diagnosis

Patient Advocacy

The Role of Care Partners

Living with WM

Waldenström: The Patient-Physician Relationship

Introduction

Tiffany Drummond, Patient Advocate

Jason Euzukonis, Patient Advocate

Dr. Shayna Sarosiek, Hematologist-Oncologist

Jason’s Initial Diagnosis

Introduction

Stephanie Chuang, The Patient Story Founder

Pete DeNardis, WM Patient Advocate

Dr. Jonas Paludo, Hematologist-Oncologist

Dr. Shayna Sarosiek, Hematologist-Oncologist

Using AI to Detect Lung Cancer Risks With Dr. Lecia Sequist

Trends in Cancer Research 2022

The Role of Bispecific Antibodies in the Treatment of Multiple Myeloma

The Latest in Multiple Myeloma: Understanding Promising Treatment Options

The Latest in Multiple Myeloma with Caitlin Costello, MD

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