Tag Archive for: DLBCL care

Will Newer Therapies Be Curative for Diffuse Large B-Cell Lymphoma Patients?

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Will Newer Therapies Be Curative for Diffuse Large B Cell Lymphoma Patients? from Patient Empowerment Network on Vimeo.

Will newer diffuse large B-cell lymphoma (DLBCL) therapies be curative for patients? Expert Dr. Nirav Shah from the Medical College of Wisconsin shares his perspective on advances in DLBCL treatments and his hopes for the future of DLBCL care.

Dr. Nirav Shah is an Associate Professor at the Medical College of Wisconsin. Learn more about Dr. Shah.

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What Is the Ann Arbor Staging System for Diffuse Large B-Cell Lymphoma

What Is the Ann Arbor Staging System for Diffuse Large B-Cell Lymphoma

 How Can Your Diffuse Large B-Cell Lymphoma Care Team Help in Treatment Decisions

How Can Your Diffuse Large B-Cell Lymphoma Care Team Help in Treatment Decisions

 How Are Bispecific Antibodies Being Used in Diffuse Large B-Cell Lymphoma Treatment?

How Are Bispecific Antibodies Being Used in Diffuse Large B-Cell Lymphoma Treatment?

Transcript:

Lisa Hatfield:

Dr. Shah, can you give all DLBCL patients a little bit of hope, even those who are relapsed and refractory in the future sometime, can you see any of these newer therapies being curative for all diffuse large B-cell lymphoma patients? 

Dr. Nirav N. Shah:

Yeah, so that’s the hope. And that’s a goal. I can tell you that in my time in practice, which is about 10 years now as a lymphoma provider, I’ve seen improvements that almost blow my mind. What’s happened in this decade, it almost seems more consequential than what happened in the 20 years prior, there have just been incredible advances, not just in chemotherapy, but immune therapy and targeted therapy, and so the goal is to keep getting better. I see a future where more and more patients with diffuse large B-cell lymphoma are cured in the front line, and more and more patients are cured in the second line.

I think it’s very, very hard, unfortunately, to say that every single patient with diffuse large B-cell lymphoma will be cured even 20 to 30 years from now, because cancer is tricky and cancer is hard, and each patient, again, is also an individual, and how they react to these treatments can also be challenging and hard. But I can tell you that my goal and the goal of so many other people like me, who not only treat lymphoma but also participating in clinical trials and do research, is to do better. And so I hope that we see a day where the great majority of patients with DLBCL are cured and able to move on and live their lives without this cancer. 

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How Can Your Diffuse Large B-Cell Lymphoma Care Team Help in Treatment Decisions?

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How Can Your Diffuse Large B-Cell Lymphoma Care Team Help in Treatment Decisions? from Patient Empowerment Network on Vimeo.

How can diffuse large B-cell lymphoma (DLBCL) treatment decisions be aided by your care team? Expert Dr. Nirav Shah from the Medical College of Wisconsin explains key factors that help guide treatment decisions and how some patient characteristics may alter dosing and treatment approaches.

Dr. Nirav Shah is an Associate Professor at the Medical College of Wisconsin. Learn more about Dr. Shah.

[ACT]IVATION TIP:

“..try to come up with an individualized treatment plan that meets the needs of your disease and your situation.”

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How Is Diffuse Large B-Cell Lymphoma Explained to a Newly Diagnosed Patient

How Is Diffuse Large B-Cell Lymphoma Explained to a Newly Diagnosed Patient?

 When Should CAR-T Therapy Be Considered for Relapsed_Refractory DLBCL Patients

When Should CAR-T Therapy Be Considered for Relapsed/Refractory DLBCL Patients

 Is Stem Cell Transplantation Still a Treatment Option for Some DLBCL Patients

Is Stem Cell Transplantation Still a Treatment Option for Some DLBCL Patients

Transcript:

Lisa Hatfield: 

So, Dr. Shah, how do you work with your DLBCL patients in helping them make treatment decisions, and what should they consider when they are making their treatment decisions? 

Dr. Nirav N. Shah:

 It’s a great question, Lisa. I think that in the current area that we’re practicing, the term I use is one size doesn’t fit all. I really try to meet with the patient, understand number one, their disease, so the biology of their disease, what subtype or phenotype is it, what stage is it presenting in. Then I try to think about the actual patient characteristics, what are their goals of care, what is their age, and what are their comorbid conditions that may impact our ability to treat them and other factors, social factors. Do they have a support system? What is the distance that they’re driving to come here to be able to get treated here, and so I take all of this information together and try to come up with the best treatment option that is available for that patient.

Now again, the majority of people are going to get common regimen such as R-CHOP chemotherapy, which is one of the standard of care for diffuse large B-cell lymphoma, but even within them, there are different ways you can administer it if you’re a particularly older patient or have a lot of medical problems. And so I really believe in trying to individualize the treatment plan for the patient, because each one of us are different, and how we tolerate things and what our body has been through in the past is going to impact how we’re going to be able to handle a specific treatment. And so my activation tip to patients about this is to try to come up with an individualized treatment plan that meets the needs of your disease and your situation.

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CAR T-Cell Therapy Care Partners: Tools for Accessing Support

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CAR T-Cell Therapy Care Partners: Tools for Accessing Support from Patient Empowerment Network on Vimeo.

How can care partners access support during the CAR T-cell therapy process? Expert Dr. Amitkumar Mehta discusses the support patients may need during CAR T and resources for accessing patient and family support.

Dr. Amitkumar Mehta is Director of the Lymphoma Program and CAR T Program and Medical Director of the Clinical Trials Office at O’Neal Comprehensive Cancer Center at UAB. Learn more about Dr. Mehta.

See More from The Care Partner Toolkit: CAR T-Cell Therapy

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Why Is a Care Partner Essential for Patients Undergoing CAR T-Cell Therapy?

 What Is CAR T-Cell Therapy for Myeloma?

What Is CAR T-Cell Therapy for Myeloma? 

 How Is CAR T-Cell Therapy Changing the Myeloma Treatment Landscape?

How Is CAR T-Cell Therapy Changing the Myeloma Treatment Landscape? 

Transcript:

Katherine:

What support services or resources are available for care partners of patients who are undergoing CAR T-cell therapy?

Dr. Mehta:

Unfortunately, I have to say that there are not that many support systems existing. It depends on the center most of the time. And, remember, that many of the centers – you know, CAR T is not offered at every community center.

Usually, they are certified centers. So, on an average, patients might have to travel to go to the center, right? So, it’s mainly center dependent. Now – and, you know, like, if I talk about my center, as I was mentioning, that I like to have the caregiver as a part of the process so they are aware what the patient is going through. Second person is – or second team person is our clinic nurse or CAR-T coordinator who actually talks to the patient in depth as well as patient’s caregiver.

Now, if you are living farther away from the center, three hours, four hours, five hours, in that case, where do I lodge myself, whether there is any other support system? We are going to stay here. Where I’m going to eat? Where is the center? Where do I have to them, whether I have to take them daily or not? So, those kinds of information is provided mainly by the center.

And centers also have many other support systems that we can tap in. The most important is to highlight is CAR T is not cheap. It’s very expensive treatment, right? So, there’s an extra step of insurance approval. Well, what is your copay? So, financial toxicity so to speak also come in picture and not only for the patients but their caregiver also.

We need to sit down if they need additional help. What other sources? What are the other agencies or maybe a local church or local community it can help? One other thing that our center has done, which has helped quite a bit, we have a patient ambassador. There was a patient who had gone through CAR T, and he had such an experience that he decided to offer his service to other patients who were going through CAR T. And he is always available.

So, he always – whenever he comes for the clinic visit and says “I’ll be happy to talk to anyone including his family, right, his mother and his father. They’re available that if [they support the patient], the caregiver, we would like to talk to them. And we would like to share our experience. And, if they have any questions, we can share the resources available to go through CAR T because, at the end, it’s a potentially curative option.

Why Is a Care Partner Essential for Patients Undergoing CAR T-Cell Therapy?

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Why Is a Care Partner Essential for Patients Undergoing CAR T-Cell Therapy? from Patient Empowerment Network on Vimeo.

How can care partners access support during the CAR T-cell therapy process? Expert Dr. Amitkumar Mehta discusses the support patients may need during CAR T and resources for accessing patient and family support.

Dr. Amitkumar Mehta is Director of the Lymphoma Program and CAR T Program and Medical Director of the Clinical Trials Office at O’Neal Comprehensive Cancer Center at UAB. Learn more about Dr. Mehta.

See More from The Care Partner Toolkit: CAR T-Cell Therapy

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CAR T-Cell Therapy Care Partners: Tools for Accessing Support

 What Are the Risks of CAR T-Cell Therapy?

What Are the Risks of CAR T-Cell Therapy? 

 How Is CAR T-Cell Therapy Changing the Myeloma Treatment Landscape?

How Is CAR T-Cell Therapy Changing the Myeloma Treatment Landscape? 

Transcript:

Katherine:

What is the role of a care partner of a patient who is undergoing CAR T-cell therapy?

Dr. Mehta:

CAR T-cell therapy is very important therapy and has evolved as a potentially curative therapy in a relapse setting. It does have a downside. And downside, when I say is side effects, which needs to be monitored closely, and it has to be detected early and intervened early, right? Steroids, as well as tocilizumab (Actemra) or anti-IL-6 treatment, are very, very effective in mitigating some of the side effect of CAR T.

But the whole process is very involved, right? You have a patient identified. Then you go through collection. Some people might get some bridging therapy, then chemotherapy, and then they get admitted. Importantly, after the infusion for two months, some of them could have neurological side effect, and that’s why for label and for safety, the patients cannot drive for two months or operate heavy machinery.

So, the whole process requires a good support. In my opinion, when we screen a patient, that “Okay, somebody’s referred to me, or my patient going through a CAR-T process,” how to make sure that they have a caregiver. And caregiver is immensely important, not only for the safety but also moral support for the patient, right?

Katherine:

Yeah.

Dr. Mehta:

And, importantly, what I make sure is that they’re part of the whole discussion. When we sit down and discuss the whole process, side effects, what’s going to happen, they are there.

They know what their loved one is going to go through. So, caregiver support is immensely important. In some patients, unfortunately, they don’t have a caregiver support. For the sake of safety, we might have to give them opportunity to see whether they can actually secure some sort of support. Maybe their distant family member living in a different state and if they can live with them, or their neighbor, or their close friends. If they can bring them to the clinic visit so that we can also discuss with them the whole process. So, caregiver is a very, very important and vital part of the whole process of CAR T.

Thrive DLBCL Resource Guide

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DLBCL Treatment and Research Updates Patients Should Know About

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DLBCL Treatment and Research Updates Patients Should Know About from Patient Empowerment Network on Vimeo.

What diffuse large B-cell lymphoma (DLBCL) treatment and research updates should patients know about? Expert Dr. Amitkumar provides an overview of recent updates and shares credible resources to learn about emerging research.

Dr. Amitkumar Mehta is Director of the Lymphoma Program and CAR T Program and Medical Director of the Clinical Trials Office at O’Neal Comprehensive Cancer Center at UAB. Learn more about Dr. Mehta.

See More from Thrive DLBCL

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DLBCL Treatment Approaches for Newly Diagnosed and Relapsed_Refractory Patients

DLBCL Treatment Approaches for Newly Diagnosed and Relapsed/Refractory Patients

 How Can DLBCL Patients Benefit From Shared Decision-Making

How Can DLBCL Patients Benefit From Shared Decision-Making?

 Why Should DLBCL Patients Feel Empowered to Speak Up

Why Should DLBCL Patients Feel Empowered to Speak Up?

Transcript:

Katherine:

The annual American Society of Hematology, or ASH, meeting happened recently, where DLBCL experts shared their research. Are there updates that patients should know about?

Dr. Mehta:

Absolutely. There are so many promising agents that were presented in a wide variety of different clinical trials, early phase or Phase I, Phase II, and also some of the advanced studies that were discussed. The promising right now, I say in a relapse setting, potentially curative is the CAR T. There was some long-term data, a newer platform of CAR T therapy, autologous, that means where patient’s own T cells have modified. There are quite many products already approved. Their long-term data, safety, and efficacy was discussed – very impressive. The new set of cellular therapy, which includes not only CAR T but other immune cell like NK cell therapy, which are also presented – very impressive. Now, remember, we need to auto our own CAR-T cells being processed. There is a time lag, about two or three weeks for preparing those cells compared to the others they’re over the shelf.

Of course, all of this data are early, but they are very promising going forward. The others are bispecific antibodies. So, so far what we have is the monoclonal antibodies targeting single antigen like CD20 or CD19. But now we have bispecific, which targets CD20 on one end but CD3, the T-cell antigen on the other end. And those antibodies have proven very effective in all B-cell lymphoma and large-cell lymphoma.

And there are so many other agents in early phase. As we go out more in-depth going forward, we will lower their efficacy and side effects and how they fare compared to the other approved agents. So, very exciting time for lymphoma patients. So, that even if it comes back, we have multiple options to have it back in remission and potentially a cure going forward.

Katherine:

Yeah. No, that’s great. How can patients learn more about emerging research?

Dr. Mehta:

Very important question. And currently, as we were discussing, Googling sometimes is not the right way because it is unfiltered information. And its sample size could be different. Somebody has a negative experience, and they would write that, and the person reading might have a different perception of the diagnosis and treatment. There are good websites, American Society of Hematology, American Society of Clinical Oncology, Lymphoma & Leukemia Society.

There are many other cancer societies. They have good information available. But the most important is actually the responsibility, in my opinion, lies on the provider. When the patient comes and sees me, I make sure that I share the information with the patient. And I direct them to the right source of information, and it should be interactive.

That means if they read something if they have any questions, they come back and ask me. At the end, it is our responsibility as a care team to be available, first of all, for any questions and provide right information. What I’ve learned through a period of time that that has helped patient quite a bit all across so that they don’t have to wander around for nonspecific information like on Google or other search platforms

DLBCL Treatment Approaches for Newly Diagnosed and Relapsed/Refractory Patients

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DLBCL Treatment Approaches for Newly Diagnosed and Relapsed/Refractory Patients from Patient Empowerment Network on Vimeo.

What are current diffuse large B-cell lymphoma (DLBCL) treatment approaches for newly diagnosed and relapsed/refractory patients? Expert Dr. Amitkumar Mehta outlines treatment options, explains how treatments have evolved, and discusses patient monitoring following treatment completion.

Dr. Amitkumar Mehta is Director of the Lymphoma Program and CAR T Program and Medical Director of the Clinical Trials Office at O’Neal Comprehensive Cancer Center at UAB. Learn more about Dr. Mehta.

See More from Thrive DLBCL

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 Tools for Setting DLBCL Treatment Goals

Tools for Setting DLBCL Treatment Goals

Transcript:

Katherine:

What treatment options are available for DLBCL patients?

Dr. Mehta:

So, it’s a very loaded question because, you know, front-line and relapse and field has evolved immensely over a period of years. But I’ll tell you that in a new diagnosis of DLBCL, still R-CHOP or R-EPOCH-based treatments are standard of care. We have – as a medical community, we have tried multiple times to improve upon the foundation of R-CHOP or R-EPOCH. But we have failed, unfortunately, that R-CHOP is still the best treatment.

There are multiple clinical trials, which are building on R-CHOP adding novel agents and see whether it gets better or not. So, therefore, when we discuss, we discuss always to ask about whether there is any clinical trial option. If the DLBCL comes back, which happens in about 30 to 40 percent of cases, there are so many treatment options.

There are novel options including bone marrow transplant. The CAR-T treatment, tafasitamab (Monjuvi), different CD19-directed therapies, or loncastuximab (Zynlonta) CD19-directed antibody drug conjugate. There are so many – polatuzumab (Polivy) – options available. Therefore, it is important to have a discussion with your provider that “Okay. Well, if it has come back, of course, it is disappointing. But what are my options, clinical trial options, novel therapeutic options,” so that we can work as a team with betterment and hoping to cure even if it has come back, a large cell lymphoma.

So, there are so many treatment options out there. I did not touch upon the clinical trial. There are so many clinical trials going on within amazing agents, which are very effective in DLBCL.

Katherine:

How are DLBCL patients monitored after treatment is completed?

Dr. Mehta:

Very importantly, if you go in remission and after the initial treatment or in a relapse setting, we have to keep an eye. And, of course, we want to detect if it comes earlier so that we can start the treatment earlier. Typically, in the beginning, in the initial two years, the follow-up could be closer, every four to six months we get together.

We have labs done. Sometimes we do scans, making sure that a lymphoma – there is no evidence of it coming back. So, the initial two to three years the follow could be closer. And then, as we space out, the follow spaces out further. And then, after you have a five-year mark where the lymphoma has not come back, the chance of it coming back goes further down. So, then I start follow-up annually on those patients. Yeah.

Why Should DLBCL Patients Feel Empowered to Speak Up?

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Why Should DLBCL Patients Feel Empowered to Speak Up? from Patient Empowerment Network on Vimeo.

Why is it vital for diffuse large B-cell lymphoma (DLBCL) patients to engage in their care? Expert Dr. Amitkumar explains the importance of speaking up and the value of considering a second opinion.

Dr. Amitkumar Mehta is Director of the Lymphoma Program and CAR T Program and Medical Director of the Clinical Trials Office at O’Neal Comprehensive Cancer Center at UAB. Learn more about Dr. Mehta.

See More from Thrive DLBCL

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An Expert’s Perspective on What it Means to Thrive With DLBCL

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 How Can DLBCL Patients Benefit From Shared Decision-Making

How Can DLBCL Patients Benefit From Shared Decision-Making?

Transcript:

Katherine:

Why should patients feel empowered to speak up?

Dr. Mehta:

So, that is very, very important because at the end, anybody and the patient is in the center. As we talked about their preferences, shared decision-making, they need to speak up because, at the end, I need to know, we need to know as a care team their preferences, right? Who is going to be my support? Who’s going to be with me? Maybe they might have to move somewhere to get the treatment, right? Or sometimes I bring up and I have so many patients who actually brought up “Well, I have a trip planned on this date,” right, or “I have a graduation planned,” or “I have son or daughter’s wedding planned,” right?

So, they should feel empowered to speak up. Yes, they’re shocked at the first instance because of their diagnosis of cancer. But that part after sharing all the information about cancer and treatment, it eases up a little bit. Then they feel “Okay, it is not end of the road,” right? “I’m going to fight it out.” But at the same time, there are important life events planned. So, they need to speak up, not only for that but also, as we talked about, preferences, their choices about the clinical trial.

Sometimes it is okay to ask whether I can go for another opinion, especially now in many institutions there are specialists who just focus on lymphomas, right? In that case, it is okay to ask whether – anywhere else I should go for an opinion and see whether I have more options. So, patient is always in center. And I feel always comfortable when patients speak up, and I make sure that “Yes, I will make sure that whatever the preference is, I will try to meet those preferences.”

How Can DLBCL Patients Benefit From Shared Decision-Making?

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How Can DLBCL Patients Benefit From Shared Decision-Making? from Patient Empowerment Network on Vimeo.

What is shared decision-making, and how can it help diffuse large B-cell lymphoma (DLBCL) patients? Expert Dr. Amitkumar Mehta explains the process and shares key questions to ask about treatment and care. 

Dr. Amitkumar Mehta is Director of the Lymphoma Program and CAR T Program and Medical Director of the Clinical Trials Office at O’Neal Comprehensive Cancer Center at UAB. Learn more about Dr. Mehta.

See More from Thrive DLBCL

Related Resources:

DLBCL Treatment Approaches for Newly Diagnosed and Relapsed_Refractory Patients

DLBCL Treatment Approaches for Newly Diagnosed and Relapsed/Refractory Patients

 DLBCL Treatment and Research Updates Patients Should Know About

DLBCL Treatment and Research Updates Patients Should Know About

 Why Should DLBCL Patients Feel Empowered to Speak Up

Why Should DLBCL Patients Feel Empowered to Speak Up?

Transcript:

Katherine:

What is shared decision-making, and how does it work?

Dr. Mehta:

Shared decision-making has evolved over the last couple of decades.

And exactly as we were talking about the treatment, this is – I always share with my patient that we are on your side, right? We are with you. We are part of your journey. And, of course, for anyone, this could be a brand-new journey, right? So, each person is different. Each person’s preference is different, right? In that case, when I have the details of whether it’s lymphoma or treatment, they also have input. They might have read somewhere. They might have a family member who had gone through the chemotherapy, and they have preferences, let’s say.

So, when we sit down and discuss that time, they also have an input on that. Write appropriate questions, you know. What is my diagnosis? What stage it is, right, whether it’s high risk or low risk? What are the potential for cure, right? What kind of chemotherapy you’re looking at, whether I have more options in that like clinical trial, right?

Yes, you said you were going to treat me with standard of care. Do I have an option of clinical trial? Like in DLBCL setting, R-CHOP, or R-EPOCH, which is the foundation of DLBCL treatment for so long. What is happening in the clinical trial is we are building on that foundation. We are building on the standard of care. So, there could be a potential that you are an eligible patient for X, Y, Z clinical trial, where you’re getting an added novel immunotherapy drug or a bispecific antibody.

Why you’re doing that to see whether we can improve upon whatever we have. So, in that, if patient is informed, they can also be a part of the conversation, right? It is just like when we go for, say, buying a car. It is not that a dealer is showing us a car, and we say, “Okay, I’ll go with it.” No, we say, “What color it is? I want this color. I want this seat. I want this model.”

I mean, that is a shared decision-making, right? And then we come to a conclusion. “Okay, this is the car that I prefer, I’m comfortable with, and I’m going to buy that.” It’s similar in cancer care.

An Expert’s Perspective on What It Means to Thrive With DLBCL

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An Expert’s Perspective on What it Means to Thrive With DLBCL from Patient Empowerment Network on Vimeo.

What does it mean to thrive with diffuse large B-cell lymphoma (DLBCL)? Expert Dr. Amitkumar Mehta shares how patients often adjust to their diagnosis and provides advice that can help them thrive.

Dr. Amitkumar Mehta is Director of the Lymphoma Program and CAR T Program and Medical Director of the Clinical Trials Office at O’Neal Comprehensive Cancer Center at UAB. Learn more about Dr. Mehta.

See More from Thrive DLBCL

Related Resources:

How Can DLBCL Patients Benefit From Shared Decision-Making

How Can DLBCL Patients Benefit From Shared Decision-Making?

 Why Should DLBCL Patients Feel Empowered to Speak Up

Why Should DLBCL Patients Feel Empowered to Speak Up?

Transcript:

Katherine:

Dr. Mehta, welcome. Would you please introduce yourself?

Dr. Mehta:

I’m Amitkumar Mehta. I am the Director of Lymphoma Program and CAR T Program at the O’Neal Comprehensive Cancer Center at University of Alabama in Birmingham. I’m also Medical Director of Clinical Trial Office at UAB.

Katherine:

Great. Thank you so much for joining us today.

Dr. Mehta:

Thank you.

Katherine:

In your opinion, what does it mean to thrive with DLBCL?

Dr. Mehta:

Katherine, it’s really important question because the cancer is – we in our clinic call this a C word. And it is very dangerous, shocking most of the time. When somebody’s diagnosed with cancer, their whole life changes. And, in that, the first reaction is shock, that “Why me? Why this happen to me?” And either you’re a mother, you are a father, or many other roles that we have in our life. Everything kind of pauses.

And then it takes a little while for them to kind of understand the situation and kind of reset in a fight mode. And then everything changes. The other important thing is information about a cancer or any cancer as a matter of fact. Then we kind of assess the situation, assess the treatment options, which are plenty. And then we go in a mode that we want to fight it out. We see the light at the end of the tunnel. This all helps to kind of thrive in that situation.

But for that, the most important part is the information of the cancer, information about the treatment. And that way we can get together ourself and we can say that “Now I’m ready to fight whatever it may come in.” Many people cling to faith. Many people cling to their family. Many people cling to their support to have that mode of fight with a cancer.

And I say that, if all of this has – it’s kind of a recipe – if it all comes together, then you can thrive well throughout the whole – the phase of diagnosis to treatment to – if you’re cured, in a subsequent part of your life.

Why Should DLBCL Patients Engage in Their Care?

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Why Should DLBCL Patients Engage in Their Care? from Patient Empowerment Network on Vimeo.

DLBCL expert Dr. Jane Winter explains the benefits of being an engaged and empowered patient and shares key questions for patients to ask their doctors.

Dr. Jane Winter is a hematologist and medical oncologist at Robert H. Lurie Comprehensive Cancer Center at Northwestern University. More information on Dr. Winter here.

See More From The Pro-Active DLBCL Patient Toolkit

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Should DLBCL Patients Consider a Second Opinion?

Transcript:

Laura Beth:

Dr. Winter, why do you think it’s important for patients to be empowered in their DLBCL care?  

Dr. Winter:

You know, a patient who is, I like the word “engaged” as well as “empowered.” I think it’s important for patients to be empowered or engaged because medicine is very complicated and very fragmented these days.  

Now, it’s so difficult to be a patient and to be sick and not be able to really take control. So, patients need to be empowered and they need partners, advocates. It’s a very sad comment on our healthcare system, but to be sure that things don’t slip through the cracks, we, the providers, the hematologist, our job is tough, but we need a patient to partner with us.  

So, for example, if you’re a patient with diffuse large B-cell lymphoma as your diagnosis, make sure to ask, “Was there a result for the FISH?” You need to make sure that doesn’t slip through the cracks. Or, if you are going for a second opinion or going to another medical center, make sure you have your records. I really wish that every patient who had a scan of one kind or another as they walked out the door got a copy of that scan, a disc. Now, that would make life so much simpler. But, make sure that you keep your own records. It’s hard and hopefully, every sick individual has a family member or a friend, someone who’s going to help them with this because this is very tough.  

But, ask questions. “Are there clinical trials I might be eligible for? Are there alternatives to the therapy you’re recommending?” These are all important questions to ask. Don’t be afraid to say, “With this treatment, what is the likelihood that my disease is going to come under control and be cured?” I think you need to know that. And, “Is there a difference between this treatment and that treatment?” Do we know? Oftentimes, we don’t have the answer for the newer treatments, but we’re hopeful.  

I just want to underscore the existence of a growing number of clinical trials that patients need to consider and think about. It’s hard at the time of the new diagnosis to be struck with not only the emotional impact of a new diagnosis and so on and not feel well and so on, but just ask the question. “Are there clinical trials I might consider?” So, that’s important, and also have optimism because the vast majority of patients, we do amazing, amazing things, and that’s why it’s so much fun to be a hematologist right now is that we have so many new and exciting treatments. And what’s more exciting than to make someone healthy again?  

So, these are exciting times. 

Advice for Speaking Up About Your DLBCL Care

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Advice for Speaking Up About Your DLBCL Care from Patient Empowerment Network on Vimeo.

Why should you speak up about your DLBCL care? Dr. Jason Westin explains why being an active member of your healthcare team is vital and provides helpful resources.

Dr. Jason Westin is the Director of Lymphoma Clinical Research in the Department of Lymphoma/Myeloma in the Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Westin, here.

See More From The Pro-Active DLBCL Patient Toolkit

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 What Helps Determine a Patient’s DLBCL Treatment Path?

What Helps Determine a Patient’s DLBCL Treatment Path?

Transcript:

Katherine:                  

Right. That leads me to my next question. What advice do you have for patients who don’t feel comfortable speaking up but they have questions about their treatment plan?

Dr. Westin:                 

Yeah. I think written questions sometimes are easier than trying to remember all of your questions. It always is a bit problematic when I go into a visit and a patient has six pages of paper written down for questions. We unfortunately don’t have unlimited time to get through all of those. But trying to condense into – prioritizing. Which of the questions are the ones that I feel like I must get into and which are ones that I can submit to have answered after the fact.

Perhaps the nurse could send me a note through the electronic medical record to answer questions 10-15 on my list. So, I think you can overwhelm a visit if you show up with a list of questions that are even 30-second answers might take an hour to answer all of them. That’s sometimes counterproductive, in my opinion, to have that level of detail on a single visit. But it’s fair to say, “Can I contact the healthcare team to get these answered electronically through the EMR,” or, “Can we table this and go into the questions that we didn’t get to at our next visit?” I think both of those are appropriate.

I think people that are not comfortable to push back on the physician, or the PA, or the nurse, doing things in writing sometimes feels a little bit less confrontational for people. So, I think that’s important to have as a backup option.

Katherine:                  

And I imagine caregivers can be helpful in this regard as well.

Dr. Westin:                 

Correct. Yeah. I think caregivers are a key part of that. And sometimes we go into a room and the patient says, “Nope. Don’t have any questions.”

And then, the caregiver has got a whole list of them. That’s very appropriate. Caregivers have that responsibility and that role to play sometimes, to be the key questioner.

Katherine:                  

Yeah. Are there resources to help patients and their loved ones to weigh the risks and benefits of different treatment options?

Dr. Westin:                 

There are. There’s lots of resources online and I would make sure that you go to a trusted site. Sometimes things sound too good to be true because they’re not true. But things like the lymphoma research foundation or the LLS, the Lymphoma & Leukemia Society, are great sources for information. And sometimes they may link you to other sites. You could also ask your healthcare provider does their institution have anything specific about this disease. Sometimes your healthcare provider might tell you, “Here’s the right article if you want to go read the source, the clinical trial, that was published to show why this treatment’s good.” They may show you that paper.

But online, careful how deep into the weeds you go because sometimes you can find things that aren’t correct. Trust good, trusted sources.

Katherine:                  

Do you think patients should consider a second opinion consult with a specialist?

Dr. Westin:                 

It sometimes is appropriate. Other times, there’s not a lot of time. If treatment’s needed right away, you don’t want to get sicker because you’re waiting for seeing somebody two states over and it takes two weeks to get there. Sometimes you want to start treatment and get the second opinion after you’ve got the fire put out. But the second opinion usually gives more peace of mind than actually changing treatments. But if you’ve got that thought of, “I’m not so sure this is what I’d like to do,” or, “I’d like to get more information,” a second opinion may be very appropriate.