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Collaborate | How Is CLL Treated?

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Collaborate | How Is CLL Treated? from Patient Empowerment Network on Vimeo.

.What are the common chronic lymphocytic leukemia (CLL) treatment approaches? This animated video reviews treatment types, essential testing, and provides guidance for engaging in treatment planning.

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How to Make Confident and Informed CLL Treatment DecisionsHow to Make Confident and Informed CLL Treatment Decisions Collaborate | Understanding Your Role in Your CLL Care

Collaborate | Understanding Your Role in Your CLL Care

 Collaborate | Understanding YOUR CLL Diagnosis

Collaborate | Understanding Your CLL Diagnosis

Transcript:  

Dr. Johnson: 

Hello again! I’m Dr. Johnson, here with another video in the CLL Collaborate series from the Patient Empowerment Network. In this video, we’re going to review the common types of CLL treatment. 

Joseph: 

And I’m Joseph, Dr. Johnson’s patient. Welcome back! 

When I was first diagnosed, Dr. Johnson told me that my CLL wasn’t yet ready to be treated and that I was in the watch-and-wait period. I was surprised by this information—it felt strange to be diagnosed with cancer and to not move forward with treatment immediately. 

Dr. Johnson, can you please explain this approach? 

Dr. Johnson: 

I would be happy to. Since CLL may grow slowly in some patients, instead of starting treatment right away, the patient’s healthcare team will monitor the disease with regular appointments and blood work.  

And as Joseph mentioned, this is called watch and wait.  

Joseph: 

Right. And some patients may never need treatment while others may start therapy later.  Dr. Johnson, what are some of the reasons that treatment would begin? 

Dr. Johnson: 

Anyone with a CLL diagnosis should be monitored closely, but an increase in a patient’s symptoms, anemia, or low platelet counts could indicate that it’s time to treat the CLL.  

Additionally, some patients may have a faster growing type of CLL that requires treatment upon diagnosis.  

Joseph: 

And when it was time for my treatment to begin, I remember we reviewed my options together, along with the goals of treatment and potential side effects.  

Dr. Johnson: 

Yes! It’s always important to set treatment goals with your doctor. Treatment goals vary by patient and help determine what is best for your unique CLL and your lifestyle.  

You should also have all essential testing prior to choosing an approach. Test results can help guide decisions and may show whether a particular treatment could be more effective for an individual patient. 

OK, let’s walk through the most common types of treatment: 

  • There is an approach commonly called F-C-R, which is two chemotherapy drugs that are combined with a targeted treatment called a monoclonal antibody.  
  • Additionally, there are several other drug therapy classes currently approved to treat CLL. They include: 
  • Immunotherapy, including monoclonal antibodies 
  • And targeted therapies 
  • If the CLL isn’t responding to chemotherapy or targeted therapy, your doctor may discuss options like stem cell transplant, CAR T-cell therapy, or a clinical trial. 

Joseph: 

When it was time to treat my CLL, Dr. Johnson helped me understand what was available for me.  So, how can you feel confident when considering your treatment options? 

  • First, consider consulting with a CLL specialist who is well-versed in ALL available treatment approaches, including clinical trials. 
  • Set treatment goals with your team and ask questions if you are confused about the proposed plan. 
  • Ask if you have had all essential testing and discuss how results may impact your treatment options. 
  • Finally, request educational resources to learn more about each approach on your own. Watching videos like this is a great start! And, you can visit powerfulpatients.org/CLL for more resources. 

Dr. Johnson: 

Great advice, Joseph! You should also bring a friend or loved one to your appointments, so you can absorb the details and take notes as a team.  

Joseph: 

Thanks for joining us! Don’t forget to download the guide that goes with this video—it can help you retain what we’ve covered. 

Collaborate | Collaborate | How Is CLL Treated? Resource Guide

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Collaborate | Understanding YOUR CLL Diagnosis Resource Guide

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Collaborate | Understanding YOUR CLL Diagnosis

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Collaborate | Understanding YOUR CLL Diagnosis from Patient Empowerment Network on Vimeo.

What do chronic lymphocytic leukemia (CLL) patients need to know about their diagnosis? This animated video explains what CLL is, how it is diagnosed, and provides advice for being proactive in care decisions.

Download Resource Guide

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Related Resources:

Who Is on a CLL Patient's Care Team

Who Is on a Patient’s CLL Care Team?

 Collaborate | Understanding Your Role in Your CLL Care

Collaborate | Understanding Your Role in Your CLL Care

 How Can You Engage in Your CLL Care

How Can You Engage in Your CLL Care?

Transcript:  

Dr. Johnson: 

Hello again! I’m Dr. Johnson, and I’m a doctor who specializes in chronic lymphocytic leukemia, or C-L-L. And this is Joseph, one of my patients. Welcome back to the CLL Collaborate Series! 

In the first video, Joseph and I talked about the important role patients play in their care and treatment decisions. 

Joseph: 

That’s right! And from the start, patients and their care partners should understand what the diagnosis actually MEANS.  

Dr. Johnson, can you please explain what CLL is? 

Dr. Johnson: 

I’d be happy to. CLL begins in the cells in the bone marrow—white blood cells called lymphocytes–and then goes into the blood. It’s the most common type of adult leukemia.1 

The condition is typically diagnosed through a blood test and confirmed by a bone marrow biopsy. Each patient is different, but some people may have symptoms that lead to testing for CLL. 

Joseph: 

And when I was diagnosed, I was having frequent colds and sinus infections. Dr. Johnson, what are other symptoms? 

Dr. Johnson: 

Like Joseph mentioned, a high risk of infection is associated with CLL. Other common symptoms may include:  

  • Fatigue 
  • Night sweats 
  • Enlarged lymph nodes or spleen 
  • Fever  
  • And unintentional weight loss 

Joseph: 

And it’s important to get an accurate diagnosis to understand how an individual patient’s CLL may behave. Dr. Johnson, what testing helps you learn more about the specifics of a patient’s disease? 

Dr. Johnson: 

This is important as no two CLL patients are the same. So, we should conduct essential testing at diagnosis to get more information about how a patient’s CLL may progress, and the results may even help guide treatment options.  

In addition to a complete blood count—or CBC, tests may include: 

  • Flow cytometry testing 
  • Cytogenetic testing  
  • Fluorescent in situ hybridization (FISH for short) 
  • Molecular testing  
  • And imaging tests, such as a CT scan 

Your doctor should review the results of these tests with you and make sure you understand how they impact your CLL care and treatment decisions.  

Joseph: 

Right! It’s a good idea to discuss the results with your doctor before you begin conversations about your treatment options.  

So, what other proactive steps can you take to understand your CLL diagnosis?  

  • Make sure you understand the specifics of your unique CLL, how it will impact your lifestyle, and if there are symptoms you should be looking out for. 
  • Ask whether you have had all key testing and discuss the results with your doctor. 
  • Find out if there are any indicators that your CLL is high-risk or fast-growing.  
  • And finally, when it’s time to make treatment decisions, ask which tests will need to be repeated. 

Dr. Johnson: 

Great advice! Don’t forget to download the resource guide that goes with this video—it provides an overview of the information we covered. 

Joseph: 

You can also visit powerfulpatients.org/CLL to view more videos with Dr. Johnson and me. Thanks for joining us!  

Entendiendo tu rol en el cuidado de tu CLL

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Entendiendo tu rol en el cuidado de tu CLL from Patient Empowerment Network on Vimeo.

Patient Empowerment Network (PEN) is a 501(c)(3) non-profit organization. PEN’s mission is to offer trusted information to empower anyone impacted by cancer, through health equity, health literacy and shared decision-making. Subscribe now to receive the latest news on cancer treatment and research: https://powerfulpatients.org/connect

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Related Resources:

How to Make Confident and Informed CLL Treatment Decisions

How to Make Confident and Informed CLL Treatment Decisions

How to Play an Active Role in Your CLL Treatment Decisions

 How Can You Engage in Your CLL Care

How Can You Engage in Your CLL Care?

Transcript: 

Dra. Johnson:  

¡Hola! Soy la Dra. Johnson, y soy médico especializado en cánceres de sangre. Y él es Joseph, quien vive con leucemia linfocítica crónica, o CLL por sus siglas en inglés. 

Y en esta serie de videos, Joseph y yo discutiremos pasos para ayudarte a aprender sobre tu diagnóstico, entender tus opciones de tratamiento y colaborar con tu equipo de atención médica en las decisiones sobre el cuidado de tu CLL. 

Joseph:  

Y aunque pueda sonar sencillo, colaborar con tu equipo no siempre es algo natural.  

Cuando me diagnosticaron con CLL, estaba confundido, no solo sobre la enfermedad en sí sino sobre MI rol en la toma de decisiones sobre mi cuidado. No me sentía cómodo compartiendo mi opinión o haciendo preguntas cuando necesitaba más detalles. 

La Dra. Johnson percibió mi vacilación y me explicó que educarme sobre mi CLL me permitiría sentirme más seguro al participar en las decisiones sobre el cuidado. 

Dra. Johnson:  

Así es, Joseph. El primer paso para sentirte cómodo hablando con tu médico es aprender sobre tu enfermedad. 

Puedes comenzar con sitios web de grupos de defensa que tienen recursos educativos, como la Red de Empoderamiento del Paciente. PEN cubre todo sobre CLL, desde lo básico para pacientes recién diagnosticados hasta información sobre terapias de vanguardia. 

Joseph:  

¡Eso es cierto! Siguiendo el consejo de la Dra. Johnson, descargué sus planificadores de visitas al consultorio para ayudarme a organizar mis pensamientos y tomar notas durante mis citas. 

Dra. Johnson:  

Y la Sociedad de Leucemia y Linfoma es otro lugar creíble para comenzar. La LLS proporciona información educativa y recursos de apoyo.   

Joseph:  

También puedes pedir recomendaciones a tu médico, o usar tu portal del paciente. El portal a menudo contiene enlaces y recursos educativos para pacientes. 

Dra. Johnson:  

Pero ten en cuenta que la información que encuentras en línea nunca es un sustituto del consejo médico. Ten cuidado con sitios que se basan en opiniones o se centran en la experiencia individual de un paciente. 

Siempre debes hablar con tu médico sobre lo que has aprendido para obtener respuestas a tus preguntas. 

Joseph:  

Muy cierto, Dra. Johnson. Y una vez que sentí que tenía un buen entendimiento de CLL, comencé a tomar medidas proactivas y a participar en mi cuidado. Aquí está mi consejo para otros: 

  • Primero, asegúrate de escribir tus preguntas y objetivos antes de tus citas. A menudo es difícil recordar cosas en el momento. 
  • Luego, trae a un ser querido para que participe en tus citas y tome notas. También es una buena idea discutir lo que aprendiste después de la visita. Esto te ayudará a retener la información que escuchaste. 
  • Además, intenta superar tus miedos de “molestar a tu médico”: sé honesto sobre cómo te sientes. Es especialmente importante mencionar cualquier síntoma o efecto secundario porque esto puede tener un impacto directo en tu cuidado. Recuerda, tu médico no puede resolver un problema a menos que le digas lo que está sucediendo. 
  • Y si estás tomando estos pasos y aún no sientes que te escuchan, deberías considerar obtener una segunda opinión o incluso cambiar de médico.  

Dra. Johnson: 

Ese es un gran consejo, Joseph: siempre deberías sentir que estás en el centro de tu cuidado. Esperamos que este video te inspire a colaborar en tu cuidado.  

Y, no olvides descargar la guía de recursos que acompaña a este video; proporciona un resumen de la información que cubrimos. 

Joseph: 

También puedes visitar powerfulpatients.org/CLL para ver más videos con la Dra. Johnson y conmigo. ¡Gracias por unirte a nosotros! 

Entendiendo tu rol en el cuidado de tu CLL Guía

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Collaborate | Understanding Your Role in Your CLL Care Resource Guide

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Collaborate | Understanding Your Role in Your CLL Care

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Collaborate | Understanding Your Role in Your CLL Care from Patient Empowerment Network on Vimeo.

How can chronic lymphocytic leukemia (CLL) patients actively engage in their care? This animated video shares tips and advice for being proactive, including participating in decisions and educating oneself about CLL.

Download Resource Guide

See More from COLLABORATE CLL

Related Resources:

How to Make Confident and Informed CLL Treatment Decisions

How to Make Confident and Informed CLL Treatment Decisions

How to Play an Active Role in Your CLL Treatment Decisions

 How Can You Engage in Your CLL Care

How Can You Engage in Your CLL Care?

Transcript: 

Dr. Johnson: 

Hi! I’m Dr. Johnson, and I’m physician who specializes in blood cancers. And this is Joseph, who is living with chronic lymphocytic leukemia—CLL for short.  

And in this series of videos, Joseph and I will discuss steps to help you learn about your diagnosis, understand your treatment options, and collaborate with your healthcare team on CLL care decisions. 

Joseph: 

And although it may sound simple, collaborating with your team isn’t always second nature. 

When I was diagnosed with CLL, I was confused—not only about the disease itself but about MY role in making decisions about my care. I didn’t feel comfortable sharing my opinion or asking questions when I needed more details.  

Dr. Johnson sensed my hesitancy and explained to me that educating myself about my CLL would allow me to feel more confident when participating in care decisions. 

Dr. Johnson: 

Right, Joseph. The first step to feeling comfortable talking with your doctor is to learn about your disease.   

You can start with advocacy group websites that have educational resources, such as the Patient Empowerment Network. PEN covers all things CLL—from the basics for newly diagnosed patients to information about cutting-edge therapies.  

Joseph: 

That’s right! At the advice of Dr. Johnson, I downloaded their office visit planners to help me organize my thoughts and to take notes during my appointments. 

Dr. Johnson: 

And The Leukemia & Lymphoma Society is another credible place to start. The LLS provides both educational information AND support resources.   

Joseph: 

You can also ask your doctor for recommendations—or use your patient portal. The portal often contains patient education links and resources.  

Dr. Johnson: 

But keep in mind that the information you find online is never a substitute for medical advice. Be wary of sites that are opinion-based or focus on one patient’s individual experience. 

You should always talk to your doctor about what you’ve learned to get your questions answered.  

Joseph: 

So true, Dr. Johnson. And once I felt I had a good understanding of CLL, I started to take proactive steps and to participate in my care. Here’s my advice to others: 

  • First, be sure to write down your questions and goals prior to your appointments. It’s often hard to remember things on the spot. 
  • Next, bring a loved one along to participate in your appointments and to take notes. It’s a good idea to discuss your takeaways after the visit, too. This will help you retain the information you heard. 
  • Also, try to get past your fears of “bothering your doctor”—be honest about how you are feeling. It’s especially important to mention any symptoms or side effects because this can have a direct impact on your care. Remember, your doctor can’t troubleshoot an issue unless you tell them what’s going on. 
  • And if you are taking these steps and still don’t feel like you are being heard—you should consider getting a second opinion or even changing doctors.  

Dr. Johnson: 

That’s great advice, Joseph—you should always feel like you are at the center of your care. We hope this video inspires you to collaborate in your care.  

And, don’t forget to download the resource guide that goes with this video—it provides an overview of the information we covered. 

Joseph: 

You can also visit powerfulpatients.org/CLL to view more videos with Dr. Johnson and me. Thanks for joining us!  

How Does CLL Affect the Immune System?

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How Does CLL Affect the Immune System? from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia (CLL) expert Dr. Seema Bhat explains how a patient’s immunity is affected by the disease and strategies for management.  

Seema Bhat, MD is a hematologist at The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Bhat.

See More from Thrive CLL

Related Resources:

Educational Resources for CLL Patients

Educational Resources for CLL Patients

 CLL and Anxiety: How Your Healthcare Team Can Help

 Setting CLL Treatment Goals WITH Your Team

Transcript:

Katherine:

Finally, our last question. One audience member would like to know more about how CLL affects the immune system, including wound healing, and how does CLL impact this? 

Dr. Bhat:

So, patients with CLL usually have a weaker immune system. The lymphocyte, which is the white cell, which is affected in CLL, is an important part for an immune system, and due to the presence of disease, these lymphocytes – although there are lots of them in patients with CLL, they tend to be non-functional. 

“Functionally incompetent,” that’s what they’re called. And it leaves the patient’s immune deficient and susceptible to a variety of infections. Also, the lymphocyte is component – the B lymphocyte is one component of immune system. There are other components like T lymphocyte, antibody, NK cells. There’s cross-dock between the B cells and what we call, the “microenvironment,” which is made of the T cells. This cross-dock is deficient in patients with CLL, again making them immune-deficient and susceptible to infection. So, that’s one impact on their immune system. 

Sometimes, there’s something else happening in the immune system where the immune system can go crazy, or wacky, and start attacking the patient’s own blood cells leading to, for example, decrease of hemoglobin or platelets, because these are immune complications. And also, due to a weak immune system, patients with CLL can have delayed wound healing, which also predisposes them to infection. 

So, being aware of these complications is important and using appropriate precautions can be very helpful. Again, because they have a weakened immune system, vaccines are very important. Using all measures to avoid infection, hand washing, staying away from patients, from people who are obviously sick, is very important. Sometimes, patients where we see they’re’ getting frequent infections, we can use what’s called, “IVIG,” intravenous immunoglobulin. These are pre-farmed antibodies which are injected into or infused into the patient at regular intervals every 4 to six weeks, which reduce the chance of these infections. 

How Do Genetic Mutations Impact a CLL Patient’s Prognosis?

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How Do Genetic Mutations Impact a CLL Patient’s Prognosis? from Patient Empowerment Network on Vimeo.

What is the best approach for chronic lymphocytic leukemia (CLL) patients with genetic mutations? CLL expert Dr. Seema Bhat shares how mutations impact prognosis and treatment.

Seema Bhat, MD is a hematologist at The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Bhat.

See More from Thrive CLL

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Understanding CLL Treatment Classes

Understanding CLL Treatment Classes

 How Are Targeted CLL Treatments Administered

 Are There CLL Clinical Trials Studying Richter’s Transformation

Transcript:

Katherine:

Okay, that’s great. Here’s one from Phil, “How do mutations affect longevity when surviving CLL? What new treatments help with P53 mutation?”  

Dr. Bhat:

So, there are certain prognostic markers for CLL, meaning certain tests that can tell us how a particular patient is expected to do. Some of these tests detect presence or absence of mutations in certain genes. For example, the IGHV gene can be mutated or unmutated. 

In patients with mutated IGHV, they do well, and patients with unmutated IGHV tend to have a more aggressive disease and may require treatment sooner. Similarly, TP53 mutations also tend to require treatment sooner, and more of these mutations do not respond well to conventional chemotherapy. However, targeted therapy has changed the outlook for these mutations, and it works very well for both these mutations. 

Are There CLL Clinical Trials Studying Richter’s Transformation?

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Are There CLL Clinical Trials Studying Richter’s Transformation? from Patient Empowerment Network on Vimeo.

Have there been any advances in treating Richter’s transformation in chronic lymphocytic leukemia (CLL) patients? Dr. Seema Bhat discusses emerging approaches. 

Dr. Seema Bhat is a hematologist at The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Bhat here.

See More from Thrive CLL

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Emerging CLL Treatment Approaches

Emerging CLL Treatment Approaches

 Educational Resources for CLL Patients

Educational Resources for CLL Patients

 What Does Minimal Residual Disease (MRD) Mean for CLL Patients

What Does Minimal Residual Disease (MRD) Mean for CLL Patients?

Transcript:

Katherine:

Sophia wants to know, “Are there any clinical trials regarding Richter’s, or DLBCL, transformation?” 

Dr. Bhat:

So, Richter’s transformation means when CLL, which is a low-grade disease, changes into high-grade lymphoma, and most commonly it’s “diffuse large B-cell lymphoma,” or DLBCL. Currently available treatments for Richter’s transformation are, unfortunately, sub-optimal. So, clinical trials to find better treatments are critical for this division, and there are a number of these currently going on. For example, some trials add targeted agents to the backbone of standard chemotherapy called, “R-CHOP.” 

So, we have one trial where acalabrutinib is being added. There’s another clinical trial where venetoclax is being combined with R-CHOP. One of the problems with Richter’s transformation is that it tends to be refractory to treatment, and it tends to come back or relapse. So, there are studies ongoing for relapse treatment as well, with combination of targeted agents. And CAR-T therapy, we just talked about that, is also being studied in Richter’s transformation. So, there’s a lot going on to improve the outcome for this. 

What Does Minimal Residual Disease (MRD) Mean for CLL Patients?

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What Does Minimal Residual Disease (MRD) Mean for CLL Patients? from Patient Empowerment Network on Vimeo.

What do chronic lymphocytic leukemia (CLL) patients need to know about minimal residual disease (MRD)? Dr. Seema Bhat explains what it is, how it’s checked, and what it means for patients.

Dr. Seema Bhat is a hematologist at The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Bhat here.

See More from Thrive CLL

Related Resources:

What Happens During CLL “Watch and Wait”

What Happens During CLL “Watch and Wait”?

 Are There CLL Clinical Trials Studying Richter’s Transformation

 How Do Genetic Mutations Impact a CLL Patient’s Prognosis

How Do Genetic Mutations Impact a CLL Patient’s Prognosis?

Transcript:

Katherine:  

Here’s another question from Anna. She asks, “What is MRD, and does that mean that the disease is cured?” 

Dr. Bhat:

So, MRD is minimal residual disease, and in CLL is defined as the number of leukemic cells that can be detected in the blood or bone marrow following treatment, meaning how many cancer cells are remaining after treatment? This can be checked by a couple of tests. Most commonly, we use flow cytometry. Undetectable MRD is currently defined as the presence of less than one cell – one CLL cell in 10,000 white cells. 

It’s emerging as an endpoint in a number of clinical trials, and presence of no MRD, also called, “MRD-negative status,” although not considered a cure, predicts better outcomes with longer remission. This is being done in combination treatment, and although it’s part of clinical trials currently, with more data available, we may start using this in clinical practice in the next coming years. 

Managing CLL Symptoms and Treatment Side Effects

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Managing CLL Symptoms and Treatment Side Effects from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia (CLL) expert Dr. Seema Bhat reviews common CLL symptoms and treatment side effects and approaches for managing them. Dr. Bhat stresses the importance of sharing any issues they may be having with their healthcare teams.

Seema Bhat, MD is a hematologist at The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Bhat.

See More from Thrive CLL

Related Resources:

Understanding CLL Treatment Classes

Understanding CLL Treatment Classes

 Educational Resources for CLL Patients

Educational Resources for CLL Patients

 CLL and Anxiety: How Your Healthcare Team Can Help

Transcript:

Katherine:

Can you please talk about common side effects of CLL – which, of course, we’ve covered already, but both the ones from the disease itself and then ones related to treatment, and what can be done about these? 

Dr. Bhat:

So, disease-related side effects, or we call them disease-related symptoms, include fatigue as a common symptom. Unintentional weight loss can happen. Fevers, chills, or drenching night sweats can happen. We call them, “B symptoms.” Spleen can enlarge, and the enlargement can cause belly pain or feeling of fullness quickly after a meal since spleen is close to our stomach, and as it enlarges, it limits the space stomach can take up in the belly. Lymph nodes can enlarge and can get uncomfortable. So, if any of these symptoms happen, then we have to treat the CLL, and once we start treating the CLL these symptoms should go away. 

As far as treatment-related side effects are concerned, for example, BTK inhibitors are associated with a certain set of side effects. For example, patients can have muscle cramping, muscle pain, joint pain. Patients can have diarrhea. Some of the side effects that we worry about is change in heart rhythm, for example, atrial fibrillation. We talked about that, or increased risk of bleeding.  

Those are some of the side effects we worry about, and if those were to develop, then, of course – for example, a patient has atrial fibrillation, and if it’s symptomatic, we hold the medication. We take care of the atrial fibrillation, usually in collaboration with cardiologists, and once that’s under control, then we have to decide what to do with the treatment. If the atrial fibrillation is under control, we can re-initiate the treatment, or we can go to one of the next-generation BTK inhibitors – the acalabrutinib (Calquence), the pirtobrutinib (LOXO-305), which have less of those side effects. 

Bleeding tends to be a concern, but anything that reduces the risk of bleeding like other medications, aspirin, clopidogrel (Plavix), other blood thinners, we can avoid them, monitor these patients very closely for any of these side effects, so that’s critical. With venetoclax, it’s usually very well-controlled. It’s the initial part of treatment that tends to be a little bit intensive because of the specific side effect called, “tumor lysis syndrome,” which means that the drug works very quickly, and cells die off quickly, they can release stuff in the blood, and things can collect in the blood. 

Uric acid can go up, electrolytes can be up, any number can go up. So, we are aware of this side effect, and we actually pre-emptively have things in place that can prevent this from happening, or if it happens, we manage it right away. For example, venetoclax has a specific dose initiation. For example, it’s called, “dose ramp-up.” We start it at a lower dose, 20 milligrams, for one week. Escalate it to 50 the next week, 100 the third week, 200 fourth week, and 400 the last week, which is the standard dose. They continue on 400 from there onward. 

And even with the slow dose escalation, in the early couple of weeks, we monitor them very closely. Once we initiate a dose, we bring them back to the clinic to recheck their blood work to see if there are any changes. If any changes have happened, we hydrate them, initiate medication for their tumor lysis syndrome. 

If the risk of tumor lysis is very high, then we monitor then admit them to the hospital. Otherwise, long-term side effects of venetoclax, what we have noticed mostly is gastritis, most side effects – mostly diarrhea. But that’s usually well-controlled. We can manage it well with supportive care. 

Where Can CLL Patients Access Financial Support?

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Where Can CLL Patients Access Financial Support? from Patient Empowerment Network on Vimeo.

Is there patient financial assistance for chronic lymphocytic leukemia (CLL) treatments? CLL expert Dr. Seema Bhat shares resources and advice for accessing support.

Seema Bhat, MD is a hematologist at The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Bhat.

See More from Thrive CLL

Related Resources:

Understanding CLL Treatment Classes

Understanding CLL Treatment Classes

 Educational Resources for CLL Patients

Educational Resources for CLL Patients

 Emerging CLL Treatment Approaches

Emerging CLL Treatment Approaches

Transcript:

Katherine:  

Financial concerns can be another source of stress for people with CLL. Obviously, everyone’s situation is different, of course, but what resources are available for patients who need financial support? 

Dr. Bhat:  

So, financial barriers can be a real concern for our patients. Targeted therapies are very expensive, and although insurances do cover them, the approved FDA drugs, copays can be very high, and this adds on because our patients with – our treatments with CLL, some of them tend to be indefinite. That means patients have to take those medications on an ongoing basis, and when they face such situations, high copays, we look into financial assistance. We look for funding for copay assistance, and funding can be provided by pharmaceutical companies. We can also apply for grants through The Leukemia & Lymphoma Society and other resources to help out our patients with these financial concerns.  

Katherine:  

So, does the patient work with the healthcare team to find financial support? 

Dr. Bhat:  

Absolutely. We at our institution have what is called, “MAP,” or Medication Assistance Program. 

And when we see that – we run the medications through the insurance, then we see the copay is high, we refer our patients to the MAP program, and then they take over. They find them grants, they find them assistance through be it pharmaceuticals, copay assistance programs. So, invariably, almost all patients who come and see us are helped through that program.  

Katherine:  

What about a nurse navigator or patient navigator? What do they do? How can they help?  

Dr. Bhat:

Well, so yes. Nurse navigators and patient navigators are also very important for caring for our patients. So, patients can have, besides our care for our patients which includes caring for their disease, caring for their symptoms, caring for their reduced hemoglobin and reduced platelets, our symptom management, they have psychological needs, they have functional needs, they have needs like family support. 

So, these are all the things that patient navigators can help patients set that up based on their – we have patients who travel from out of state, are from two or three hours away. So, these patient navigators look into what resources they should have available locally. Sometimes, patient navigators help us – some patients cannot do frequent travels back and forth, so we get them connected to local oncologists, also. So, patient navigators look into those appointments, look into those offices, so they provide a lot of help to us manage our patients. So, they provide more of a holistic management, rather than just treatment of CLL. 

Addressing Anxiety About CLL and COVID

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Addressing Anxiety About CLL and COVID from Patient Empowerment Network on Vimeo.

Many patients with chronic lymphocytic leukemia (CLL) worry about how they may be impacted by COVID. Dr. Seema Bhat shares advice for CLL patients who are anxious about being immunocompromised and what they can do to protect themselves

Seema Bhat, MD is a hematologist at The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Bhat.

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Related Resources:

What Happens During CLL “Watch and Wait”

What Happens During CLL “Watch and Wait”?

Where Can CLL Patients Access Financial Support

 CLL and Anxiety: How Your Healthcare Team Can Help

Transcript:

Katherine:

What about worry and anxiety related to COVID and compromised immunity? What would you like patients to know? 

Dr. Bhat:

So, COVID has become another source of anxiety, unfortunately, for many of our patients, and rightly so. Our patients with CLL are considered immunocompromised, meaning that their immune systems do not work that well, which makes these patients very susceptible to different kinds of infections, COVID being one of them. And this was actually shown by some of the early COVID-related studies that showed a very high mortality in patients with CLL. 

This has improved now, mostly because now we are better equipped to handle COVID. We have COVID-directed medications available, but the major impact has been made by the vaccines. So, we highly encourage our patients to get vaccinated against COVID and keep up to date with the latest CDC guidelines. Also, we have Evusheld available, which is under emergency use authorization, and our patients with CLL, due to their weaker immune system, are eligible to get this, which adds an extra layer of protection for our patients. 

Also, it’s important to know that our test – if our patients test do test positive for COVID, they should let their team of doctors know immediately, since now we have monoclonal antibodies and pills that can be used to treat symptomatic COVID. 

Katherine:

That’s great information, thank you.