How a Gastrointestinal Symptom Led to My DLBCL Diagnosis

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How a Gastrointestinal Symptom Led to My DLBCL Diagnosis from Patient Empowerment Network on Vimeo.

Charles Clawson shares how experiencing some heartburn after eating a spicy wonton led him to being diagnosed with Diffuse Large B-Cell Lymphoma (DLBCL).

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

Transcript:

My name is Charles Clawson, and I was diagnosed with diffuse large B-cell lymphoma after my diagnosis with non-Hodgkin follicular lymphoma transformed into DLBCL. Strangely, my initial diagnosis came after the lone symptom of experiencing heartburn after eating a spicy wonton. After seeing a gastrointestinal doctor, my lymphoma was discovered at the same time my wife and I were asked to serve a mission in Norway.

My treatment journey began with three rounds of chemotherapy, which brought on horrible nausea. I was feeling so unwell that my oncologist ordered another scan for my lymphoma. Shockingly, my lymphoma had actually worsened during the chemotherapy, so my doctor sent me to Huntsman Cancer Institute for an emergency evaluation. They gave me a prognosis that I had three days to live, and my wife couldn’t even visit me due to COVID-19 restrictions.

Fortunately, my doctors decided to do another biopsy from a different location and then discovered that my lymphoma was actually DLBCL. I had to be fitted with a feeding tube for several months while a hole in my esophagus healed, and I had three rounds of E-POCH followed by three rounds of R-CHOP. I completed treatment in June 2021 and have been in remission ever since then. I’m so grateful that I’m here and plan to serve on an upcoming mission trip in Denver, Colorado.

Some of the things I’ve learned on my path to empowerment include:

  • Don’t be afraid to get a second opinion. It could change your diagnosis and ultimately save your life.
  • Make sure you get enough biopsies to accurately diagnose your lymphoma subtype.
  • I thank God, my incredible angel wife, and amazing medical providers at Huntsman for saving my life.

For me, these actions are key to staying on my path to empowerment.

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Un diagnóstico de linfoma difuso de células B grandes: el viaje de un paciente

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Un diagnóstico de linfoma difuso de células B grandes: el viaje de un paciente from Patient Empowerment Network on Vimeo.

Después de que los síntomas comenzaron con sudores nocturnos y dolor de estómago, a Tina se le diagnosticó linfoma difuso de células B grandes (DLBCL). Ella comparte algunas de las cosas que ha aprendido en su viaje DLBCL, que incluyen: “Tenga cuidado donde busca información sobre el cáncer” y la importancia de contarle a un círculo de seres queridos de confianza sobre su diagnóstico. Vea la historia de DLBCL de Tina.

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

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

Transcript:

Mi nombre es Tina y me diagnosticaron linfoma difuso de células B grandes a finales de los cuarenta. Por desgracia, me diagnosticaron erróneamente dos veces antes de que me hicieran suficientes pruebas para diagnosticarme de DLBCL y nunca había conocido a nadie con cáncer cuando recibí el diagnóstico.

Mis síntomas empezaron con sudores nocturnos y dolor de estómago. Pensé que mis sudores nocturnos podían ser el inicio de la perimenopausia, así que mi médico me recetó un medicamento contra el reflujo ácido para el dolor de estómago.

Luego, el dolor se trasladó a uno de mis costados, en mi cintura. El médico de urgencias me diagnosticó gases y, un par de semanas más tarde, otro médico de una clínica me volvió a diagnosticar gases. Cuando insistí en que no tenía gases, el médico simplemente lo descartó como una distensión muscular.

Un par de meses más tarde, vi a otra doctora por mis dolores y decidió hacerme un análisis de sangre que arrojó resultados preocupantes. También me hizo otras pruebas por vía rápida, incluyendo una tomografía computarizada y una biopsia. Aunque me sorprendió el diagnóstico, también me sentí aliviada de saber por fin qué me estaba pasando. También tuve la suerte de contar con una oncóloga excelente que fue la combinación perfecta de apoyo y claridad sobre el tratamiento y las perspectivas del linfoma B difuso de células grandes.

Aunque el DLBCL es un cáncer agresivo, la doctora señaló que es muy curable. Recibí seis ciclos de quimioterapia junto con epoetina alfa (Procrit) para prevenir la anemia. Desde que terminé el tratamiento, me encuentro bien y me he sometido a exploraciones periódicas que han salido bien. Me siento afortunada y me complace compartir mi experiencia con el cáncer para ayudar a otros pacientes y a sus seres queridos.

Algunas de las cosas que he aprendido en mi viaje por el linfoma B difuso de células grandes son:

  • Empodérate haciendo preguntas a sus médicos sobre las opciones de tratamiento y lo que puede esperar antes, durante y después del mismo.
  • Ten cuidado con dónde buscas información sobre el cáncer, ya que algunas fuentes pueden ser demasiado negativas sobre tus posibilidades de supervivencia. Utiliza recursos fiables como Patient Empowerment Network, The Lymphoma Research Foundation y The Leukemia & Lymphoma Society. 
  • Infórmate sobre las opciones de ensayos clínicos. Puede haber programas que te ayuden con los gastos de viaje, alojamiento y otros gastos no cubiertos.
  • No sientas que tienes que contarle a todo el mundo sobre tu cáncer. Puede contárselo sólo a aquellas personas con las que se sienta cómodo, aunque sean pocas.
  • Escucha a tu intuición y a tu cuerpo. Yo sabía que algo iba muy mal, pero los médicos me ignoraron durante meses antes del diagnóstico.

Estas acciones fueron clave para mantenerme en mi camino hacia el empoderamiento.

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A Diffuse Large B-Cell Lymphoma Diagnosis: One Patient’s Journey

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A Diffuse Large B-Cell Lymphoma Diagnosis: One Patient’s Journey from Patient Empowerment Network on Vimeo.

After symptoms began with night sweats and pain in her stomach, Tina was diagnosed with diffuse large B-cell lymphoma (DLBCL). She shares some of the things she has learned on her DLBCL journey that include:” Be careful about where you search for cancer information” and the importance of telling a trusted circle of loved ones about your diagnosis. Watch Tina’s DLBCL story.

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What Promising Treatments Are Available for Diffuse Large B-Cell Lymphoma Patients

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How Can Patients Overcome Noted Diffuse Large B-Cell Lymphoma Disparities

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

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

Transcript:

My name is Tina, and I was diagnosed in my late-40s with diffuse large B-cell lymphoma. Unfortunately, I was misdiagnosed twice before I received enough testing to be diagnosed with DLBCL and I’d never known anyone with cancer when I received my diagnosis.

My symptoms began with night sweats and pain in my stomach. I thought my night sweats could be the start of perimenopause, so my doctor prescribed an acid reflux medication for the stomach pain. 

Next, the pain moved to one of my sides at my waist. The doctor at urgent care diagnosed the pain as gas, and then a different doctor at a clinic diagnosed me with gas again a couple weeks later. When I insisted that I wasn’t experiencing gas, the doctor simply dismissed it as a muscle strain.

A couple months later, I saw another doctor about my pain, and she decided to run a blood test that came back with concerning results. She also fast-tracked some other tests for me including CT scans and then a biopsy. Even though I was shocked with my diagnosis, I also felt relieved to finally know what was wrong. I was also fortunate to get an excellent oncologist who was the perfect combination of supportiveness while also being clear about my diffuse large B-cell lymphoma treatment and outlook. 

Even though DLBCL is an aggressive cancer, she pointed out that DLBCL is highly curable. I received six rounds of chemo along with epoetin alpha (Procrit) that prevented anemia. Since I finished treatment, I’ve been feeling good and have received regular scans that have all been clear. I feel fortunate and am happy to share my cancer journey to help other patients and their loved ones.

Some of the things I’ve learned on my diffuse large B-cell lymphoma journey include:

  • Empower yourself by asking your doctors questions about treatment options and what to expect before, during, and after treatment.
  • Be careful about where you search for cancer information, since some sources may be overly negative about your chance of survival. Use credible sources like Patient Empowerment Network, The Lymphoma Research Foundation and The Leukemia & Lymphoma Society. 
  • Learn about clinical trial options. There may be programs that will help you with travel, lodging, and other uncovered expenses.
  • Don’t feel like you need to tell everyone about your cancer. You can tell only those you feel comfortable sharing with even if that’s only a small number of people.
  • Listen to your intuition and body. I knew something was seriously wrong but was dismissed by my doctors for months before my diagnosis.

These actions were key for staying on my path to empowerment.

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

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How Are Bispecific Antibodies Being Used in Diffuse Large B-Cell Lymphoma Treatment? from Patient Empowerment Network on Vimeo.

How can diffuse large B-cell lymphoma (DLBCL) patients be helped with bispecific antibodies? Expert Dr. Nirav Shah from the Medical College of Wisconsin shares an explanation of bispecific antibodies and his perspective on potential approvals and how the treatment could serve additional DLBCL patients in the future.

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

See More from [ACT]IVATED DLBCL

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What Promising Treatments Are Available for Diffuse Large B-Cell Lymphoma Patients

What Promising Treatments Are Available for Diffuse Large B-Cell Lymphoma Patients

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How Can Patients Overcome Noted Diffuse Large B-Cell Lymphoma Disparities

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

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

Transcript:

Lisa Hatfield:

In addition to things like CAR-T therapy, blood cancer, there’s a lot of progress being made in something called bispecific antibodies. Can you talk about that a little bit, how that’s being looked at with DLBCL? 

Dr. Nirav N. Shah:

Yeah, so bispecific antibodies in a way are a drug-ish form of CAR T. So CAR T is complex, it involves collecting your immune system cells, reprogramming them, and often that involves sending them to a third party manufacturing site, that can sometimes take several weeks to manufacture, and the other issue with CAR T is that it’s limited in accessibility because it’s often only available in these larger regional centers, which often means a big city, and not everybody has access to that. Bispecific antibodies, I think are going to be really, really important therapies in diffuse large B-cell lymphoma, and I think other cancers as well.

What they do is they give you a drug molecule, an antibody that on one end binds the T-cell, which is sort of that immune effector cell, and on the other end, targets the cancer cell, which in this case is a B cell, so in a way, it sort of works like CAR T. Now, it is not CAR T, and I wouldn’t necessarily compare those two, but the exciting thing is that we’ve seen really, really nice outcomes with bispecific antibodies, and while we don’t have one approved in diffuse large B-cell lymphoma today, I anticipate that those drugs are going to be available and approved in the very near future.

And why is that important? Because these drugs can now be given anywhere because they’re a drug molecule. Again, sites will have to do some training and learn how to give them, but there’s a potential for them to be really administered at regional sites and at locations that don’t require patients to travel long distances to get access to CAR T. Now, I’m not saying that we should use one therapy in lieu of the other, we should always do the best therapy for the patient, but thinking about accessibility, it’ll be great to have another option available. And not only that, these drugs also have been shown to have efficacy in patients that have failed CAR T. So that gives us another sort of tool in our tool basket to use, while I mentioned that we’re giving more and more CAR T in the second line, as this therapy got approved in that setting, we now have another option with bispecific antibodies for patients that don’t respond to CAR T, and, unfortunately, not everybody does respond to CAR T-cell therapy. So very excited. I hope, and I think there’ll be an approval in diffuse large B-cell lymphoma later this year. 

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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.

See More from [ACT]IVATED DLBCL

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

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Is Stem Cell Transplantation Still a Treatment Option for Some DLBCL Patients? from Patient Empowerment Network on Vimeo.

Can diffuse large B-cell lymphoma (DLBCL) patients expect to undergo stem cell transplant? Expert Dr. Nirav Shah from the Medical College of Wisconsin explains some alternatives to stem cell transplant in specific situations and shares his perspective about how the use of stem cell transplants may evolve in the future. 

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

[ACT]IVATION TIP:

“…don’t discard transplantation because it’s an older therapy, it’s just one that needs to be used in the right scenario for each patient.”

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What Promising Treatments Are Available for Diffuse Large B-Cell Lymphoma Patients

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

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

 How Can Diffuse Large B-Cell Lymphoma Treatment Symptoms Be Managed

How Can Diffuse Large B-Cell Lymphoma Treatment Symptoms Be Managed

Transcript:

Lisa Hatfield:  

So in light of all of these newer therapies, there’s still a place for stem cell transplantation with the DLBCL patients? 

Dr. Nirav N. Shah:

Yeah, great question. So the goal is always to do better. And so we have this new exciting therapy called CAR T, that for a lot of patients is going to replace the role of the stem cell transplant. However, there still is a role for transplant in patients that have later relapse, so those patients who relapse one to two years, transplant is still a standard of care and an option that I would consider for my patients, and there’s more than one type of stem cell transplant out there. So we often think about autologous transplants in diffuse large B-cell lymphoma, where we use our own immune system to rebuild it after giving a high intensity chemotherapy treatment to eliminate the cancer. But there’s a second type of transplant called allogeneic stem cell transplant, and that is where we actually replace your whole immune system with one from a healthy donor.

Our group, actually, for patients that fail CAR T-cell therapy, which is one of our better treatment options that we have, but again, not 100 percent effective, we’ve used allogeneic stem cell transplant to try and cure those patients and offer them something where we replace their immune system with one from a healthy donor to be able to get rid of the cancer where other treatments have failed.

So I think that how we use transplant is going to be redefined with newer therapies and immune therapies like CAR , immune T or bispecific antibodies. But I do think that either auto or allogeneic transplant is still going to be part of the treatment algorithms, especially for those patients who have failed other options. So my activation point is don’t discard transplantation because it’s an older therapy, it’s just one that needs to be used in the right scenario for each patient. 

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How Can Diffuse Large B-Cell Lymphoma Treatment Symptoms Be Managed?

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How Can Diffuse Large B-Cell Lymphoma Patients Manage Treatment Symptoms? from Patient Empowerment Network on Vimeo.

How can diffuse large B-cell lymphoma (DLBCL) treatment symptoms be managed? Expert Dr. Nirav Shah from the Medical College of Wisconsin explains common symptoms and side effects that patients experience and how they can help in managing their care along with their team.

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

[ACT]IVATION TIP:

“…call us. Let us know what’s going on. We can’t help you with your symptoms if we’re not aware, and we don’t mind those phone calls because we want to help patients through that journey.”

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 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, newly diagnosed DLBCL patients, they come in and typically, you would most likely prescribe a chemotherapy regimen, and then maybe down the road they may see something like CAR-T therapy. Can you explain what type of symptoms they may or may not have, and how they can manage those symptoms and maybe even a tip on who to call when they experience symptoms? 

Dr. Nirav N. Shah:

Yeah, it’s a great question, Lisa. So the front-line regimen for diffuse large B-cell lymphoma in 2023 is a combination chemotherapy regimen. The good news is we’ve gotten so much better at delivering these drugs in a safe and efficacious manner, we’re really good at preventing those horrible things that we think about when we watch movies of people vomiting all the time and being nauseous and losing weight. We have really good antiemetics, we develop a program to deal with nausea or vomiting should it occur, and escalate our treatments to prevent it in those patients that are more sensitive to the chemotherapy drugs.

That being said, it’s still chemotherapy. And so people do feel the side effects. I think the hardest side effect for a lot of people to endure is hair loss, these combination chemotherapy do cause hair loss, and then that often is even a little bit harder for women, just given the stigma for hair and how important that is to some of our female patients, and so these are challenges that I try to discuss with patients to help them anticipate. Again, we have lots of different services at our institution, we have a wig service, a place for people to go to find options on how to deal with that.

The biggest medical symptoms that I tell people that everybody experiences is just fatigue. We’re putting poison in your body to kill a cancer. We’re doing it for a good reason, but that just wipes people out. Most patients will not have the energy, the appetite, the drive that they normally have when they’re feeling well. And again, for the most part, that’s short-lived, but for some patients that can even last three to six months after completing their chemotherapy regimen. There’s lots of individual side effects that I warn them about, the one that I am most concerned about for my patients is infection, because chemotherapy doesn’t only kill the part of the immune system, the lymphoma, it can also weaken the immune system, a part of the immune system that is there to protect you from infection.

And so we tell them to monitor for fevers, and if they’re not feeling well to call us in. We provide our patients numbers for 24/7 contact. So we have a number that they can call to, and no matter when they call, they’ll be able to get either an on-call provider or the team if it’s during the daytime, to be able to help them with whatever issue or symptoms that they’re having. And so my activation point to my patients is, call us. Let us know what’s going on. We can’t help you with your symptoms if we’re not aware, and we don’t mind those phone calls because we want to help patients through that journey. 

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Why Is Clinical Trial Participation Vital for Diffuse Large B-Cell Lymphoma Patients?

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Why Is Clinical Trial Participation Vital for Diffuse Large B-Cell Lymphoma Patients? from Patient Empowerment Network on Vimeo.

Why is it vital for diffuse large B-cell lymphoma (DLBCL) patients to participate in clinical trials? Expert Dr. Nirav Shah from the Medical College of Wisconsin shares his perspective on the benefits of clinical trial participation and advice for patients who are considering joining a trial.

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

[ACT]IVATION TIP:

“…for clinical trials is, consider them. They may not be right for you, and that’s okay.”

See More from [ACT]IVATED DLBCL

Download Resource Guide

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What Promising Treatments Are Available for Diffuse Large B-Cell Lymphoma Patients

What Promising Treatments Are Available for Diffuse Large B-Cell Lymphoma Patients

 How Can Patients Overcome Noted Diffuse Large B-Cell Lymphoma Disparities

How Can Patients Overcome Noted Diffuse Large B-Cell Lymphoma Disparities

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

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

Transcript:

Lisa Hatfield:

Okay, Dr. Shah, why is clinical trial participation so important with DLBCL patients, and what advice do you have for those patients considering a clinical trial? 

Dr. Nirav N. Shah:

Yeah, so number one, I always tell my patients one thing is it’s, clinical trials are an opportunity or an option, not a mandate. And so I never want a patient thinking that they have to participate in the clinical trial, participating in a clinical trial is an opportunity to help define potentially, the next treatment. Every treatment we’ve talked about up until this point was because kind, courageous people were willing to participate in a clinical trial. We wouldn’t have CAR T if hundreds of patients didn’t go on these clinical trials and be willing to be a subject and go through a treatment that was at the time undefined and without knowing how efficacious it was going to be.

And so clinical trials are important because without patients participating in clinical trials, how can we do better? That being said, a clinical trial is not right for every patient, and so it’s a value, it’s a judgment that each individual has to make. But I know that I really value my patients that are willing to participate because they all become part of that story about how to improve outcomes for diffuse large B-cell lymphoma for that patient who’s diagnosed five years from today or 10 years from today. And their participation, again, may not be recognized in the time that they’re participating, but what they did helps define the future of how we treat this disease. So my activation point for clinical trials is, consider them. They may not be right for you, and that’s okay. 

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

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When Should CAR-T Therapy Be Considered for Relapsed/Refractory DLBCL Patients? from Patient Empowerment Network on Vimeo.

When can relapsed/refractory diffuse large B-cell lymphoma (DLBCL) patients benefit from CAR T-cell therapy? Expert Dr. Nirav Shah from the Medical College of Wisconsin explains study results that compared chemo versus CAR T-cell therapy in relapsed DLBCL patients and the importance of looking at the timing of relapse.

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

[ACT]IVATION TIP:

“…for people thinking about what is the best treatment for CAR T is think about how the disease is behaving, and did you relapse early or did you relapse late?”

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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

 What DLBCL Treatment Options Are There for Relapsed/Refractory Patients

What DLBCL Treatment Options Are There for Relapsed/Refractory Patients

 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:

When do you say that CAR-T therapy should be used for relapsed/refractory patients? Is it after the first line of therapy has failed, or when do you tell your patients to consider that? 

Dr. Nirav N. Shah:

Yeah, so there was a large clinical trial that compared outcomes for those patients who had early relapse of diffuse large B-cell lymphoma. So within 12 months of finishing their R-CHOP chemotherapy, and they compared that to what was our historical standard, was to get more chemotherapy and then consider a stem cell transplant. And CAR T did better, and CAR T had better outcomes. And then recently, they just actually demonstrated that those patients that got CAR T early as a second-line therapy actually had better survival. For patients with early relapse in diffuse large B-cell lymphoma, the standard of care is to go right to CAR T-cell therapy as long as you’re a candidate, which means you have to be healthy enough, have the social support and the resources to be able to go through that therapy, which does require you to be within 45 minutes of a CAR-T center for about a month.

And again, we talked about, again, there’s issues with accessibility, which limits it sometimes, the availability to CAR T to all of our patients. Now, for those patients who relapse later, and we see that, patients who relapse a year-and-a-half, two years or even three or four years after their initial treatment, for those patients, the standard of care is to give a second-line chemotherapy, and then based on how well you respond to that, you would consider either doing a stem cell transplant if you had a very nice response to that second-line therapy, or if you were refractory to that second-line therapy, then getting CAR T as sort of a third-line therapy.

So again, there are lots of caveats here. The main distinction I think about is, when did you relapse? Did you relapse earlier or late? And based on that, choosing the treatment that’s most appropriate for that situation. So my activation tip for people thinking about what is the best treatment for CAR T is think about how the disease is behaving, and did you relapse early or did you relapse late? 

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What DLBCL Treatment Options Are There for Relapsed/Refractory Patients?

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What DLBCL Treatment Options Are There for Relapsed/Refractory Patients? from Patient Empowerment Network on Vimeo.

What can relapsed/refractory diffuse large B-cell lymphoma (DLBCL) patients look to for treatment options? Expert Dr. Nirav Shah from the Medical College of Wisconsin shares research updates for relapsed/refractory DLBCL patients and his perspective about advances in DLBCL care.

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

[ACT]IVATION TIP:

“…for those patients who have relapsed DLBCL, is learn your options and make the decision that is best that fits your personal needs, your ability to handle the treatment with your doctor.”

See More from [ACT]IVATED DLBCL

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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

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

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

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

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

Transcript:

Lisa Hatfield:

What treatment options are available for patients who have either relapsed with DLBCL or are refractory to certain treatment options, meaning that they are no longer responding to those treatment options? 

Dr. Nirav N. Shah:

Yeah, so the good news is, is for DLBCL, even in the relapsed setting, we have lots of options available, and that’s really exciting. The way that I look at a patient is how quickly did they relapse and then are they eligible for a higher intensity treatment or not. We know that patients who relapse early, within the first 12 months, that for that group of patients, the best therapy based on clinical trials is to get them to a CAR T-cell therapy type treatment, which has high efficacy and the potential to cure patients with diffuse large B-cell lymphoma. We now have patients who are more than five years out after CAR T with relapsed disease and an ongoing remission.

Now, for some patients who relapse later, we still consider things like stem cell transplantation, which was sort of the standard of care for 20 plus years until recent data showed that CAR T might be a better option in those patients who relapse early. Now, we have a group of patients that often aren’t candidates for high intensity treatment because they’re older because they have medical problems, or because they live too far away, and they can’t commit to the three to four weeks that it takes to be able to get a therapy like CAR T or stem cell transplant at a larger community or a larger academic hospital.

And the good news is that we even have options for them, so there’s new chemotherapy regimens, new antibody-based treatments that again, I like to think of those medications as more disease control rather than disease cure, but for some patients, disease control is often adequate. It allows him to be functional, go to work, with the milder therapy that sort of meets their, again, personal and individualized needs. And so my activation tip for those patients who have relapsed DLBCL, is learn your options and make the decision that is best that fits your personal needs, your ability to handle the treatment with your doctor. 

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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.”

See More from [ACT]IVATED DLBCL

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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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How Do Different Diffuse Large B-Cell Lymphoma Subtypes Impact Treatment Options?

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How Do Different Diffuse Large B-Cell Lymphoma Subtypes Impact Treatment Options? from Patient Empowerment Network on Vimeo.

How are diffuse large B-cell lymphoma (DLBCL) subtypes impacting treatment options? Expert Dr. Nirav Shah from the Medical College of Wisconsin explains key factors that help determine DLBCL subtype and the importance of knowing your subtype for optimal care. 

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

[ACT]IVATION TIP:

“…know your subtype of diffuse large B-cell lymphoma, so you can understand what treatment is best for that variant.”

See More from [ACT]IVATED DLBCL

Download Resource Guide

Download Resource Guide en español

Related Resources:

What Promising Treatments Are Available for Diffuse Large B-Cell Lymphoma Patients

What Promising Treatments Are Available for Diffuse Large B-Cell Lymphoma Patients

 How Can Patients Overcome Noted Diffuse Large B-Cell Lymphoma Disparities

How Can Patients Overcome Noted Diffuse Large B-Cell Lymphoma Disparities

 How Can Diffuse Large B-Cell Lymphoma Treatment Symptoms Be Managed

How Can Diffuse Large B-Cell Lymphoma Treatment Symptoms Be Managed

Transcript:

Lisa Hatfield:

What are the subtypes of DLBCL, and how does that impact treatment options? 

Dr. Nirav N. Shah:

Yeah, so I think I may have talked about that a little bit earlier. So we call it diffuse large B-cell lymphoma, but it’s really not one disease, there are multiple subtypes, so one thing is a cell of origin, and this sort of says what part of the lymph node does this diffuse large B-cell lymphoma originate from. And so there’s something called the germinal center phenotype. The other one is called the activated B-cell phenotype and prognostically, these sort of behave differently. Currently, we’re treating them the same, but we’re hoping that in the future, we’ll actually have algorithms that are more refined so that they are giving the best treatment for each subtype.

I mentioned earlier that there’s a variant called double-hit lymphoma that we think is particularly aggressive, and for that variant, I would actually consider clinical trials as an option if they’re available to you, but outside of a clinical trial, we do give higher intensity chemotherapy regimens, there’s more than one standard of care in that setting. But, again, important to understand what is your DLBCL type and what are some of these other molecular mutations that might be there that would impact that frontline treatment. So my activation tip for this is to know your subtype of diffuse large B-cell lymphoma, so you can understand what treatment is best for that variant. 

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What Promising Treatments Are Available for Diffuse Large B-Cell Lymphoma Patients?

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What Promising Treatments Are Available for Diffuse Large B-Cell Lymphoma Patients? from Patient Empowerment Network on Vimeo.

What promising diffuse large B-cell lymphoma (DLBCL) treatments are available for patients? Expert Dr. Nirav Shah from Medical College of Wisconsin shares an update on emerging research and patient types who may benefit from potential treatment approvals.

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

[ACT]IVATION TIP:

“…understand their stage of disease and review the treatment options available for that stage and subtype of diffuse large B-cell lymphoma to best optimize the regimen to each individual patient.”

See More from [ACT]IVATED DLBCL

Download Resource Guide

Download Resource Guide en español

Related Resources:

How Do Different Diffuse Large B-Cell Lymphoma Subtypes Impact Treatment Options

How Do Different Diffuse Large B-Cell Lymphoma Subtypes Impact Treatment Options

 What DLBCL Treatment Options Are There for Relapsed/Refractory Patients

What DLBCL Treatment Options Are There for Relapsed/Refractory 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:

Dr. Shah, can you speak to some promising treatments that are available now for DLBCL patients? 

Dr. Nirav N. Shah:

Yeah, so while we consider DLBCL to be one disease, there is a lot of heterogeneity in it, and so there are sort of subtypes of DLBCL that we approach differently. And so the most well-known standard of care for DLBCL is a chemotherapy regimen called R-CHOP. It’s a five-drug regimen, it’s given once every three weeks for up to six cycles, again, depending on the stage, the presentation that the patient is in.

However, the goal has always been to do better than R-CHOP and there is an exciting new regimen called pola-R-CHP which gives you a drug called polatuzumab (Polivy) in lieu of an older drug called vincristine (Vincasar PFS), which is part of the R-CHOP regimen, and that regimen was tested head-to-head against R-CHOP chemotherapy and did have a slight improvement about a benefit of 5 percent to 6 percent in terms of its ability to induce a long-term remission, and again, that number may sound small, but every patient matters, and so that regimen, some of us have started adapting that, although I will note that that regimen is currently not FDA-approved, and so its accessibility and availability may be limited, although I’m optimistic that this regimen will be approved and become an option for the frontline for patients to come.

There are some types of diffuse large B-cell lymphoma that are a little bit more aggressive, we call some of these double-hit lymphomas, so a term that you may hear if you’re diagnosed and it’s something a doctor may talk about, and so for those patients, we often use a higher intensive regimen, the regimen that we use at our institution is a regimen called dose-adjusted EPOCH and so you can see here that it’s a little bit complicated, there are caveats here, there’s different treatment options available, and the number of treatments we give is partially based on how you present and the stage that you initially show up with. And so I think that it’s important to have a conversation with your physician. And so my activation tip for patients is to understand their stage of disease and review the treatment options available for that stage and subtype of diffuse large B-cell lymphoma to best optimize the regimen to each individual patient. 

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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

 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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How Can DLBCL Patients Benefit From Shared Decision-Making?

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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.