CLL Treatments and Clinical Trials Archives

When it comes to treatment, CLL patients and their care partners have much to consider. There are often many options available, each with advantages and disadvantages. Some people may seek clinical trials, others may have few feasible options. Understanding treatment options, goals, and what to expect are vital to achieving the best possible outcome for you.

More resources for Chronic Lymphocytic Leukemia (CLL) Treatments and Clinical Trials from Patient Empowerment Network.

Collaborate | What You Should Know About CLL Clinical Trials

 

What role do clinical trials play in treating chronic lymphocytic leukemia (CLL)? This animated video explains clinical trials, reviews the benefits of patient participation, and discusses questions to ask your healthcare team.

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Transcript:

Dr. Johnson:

Hello everyone! I’m Dr. Johnson, a physician specializing in blood cancers. Welcome back to the CLL Collaborate series from the Patient Empowerment Network.  

Joseph:

And I’m Joseph, Dr. Johnson’s patient. Today, we’ll be discussing an important topic: CLL clinical trials. We will talk about what clinical trials are, their role in advancing research, and how patients may benefit from participation. 

Dr. Johnson:

Let’s get started. Clinical trials are research studies that involve patients, and the goal is to find better ways to prevent, diagnose, or treat diseases. They are essential for advancing medical knowledge and for bringing new treatments to patients. 

Joseph:

Thanks, Dr. Johnson. And how exactly do clinical trials move research forward? 

Dr. Johnson:

Good question! Clinical trials provide critical data on the safety and effectiveness of new treatments. They also help researchers understand how different therapies work in diverse groups of people and ensure treatments work well and do not cause harm to humans before they become widely available.  

Early phase clinical trials are used to determine the treatment’s safety, while the latter phases investigate how effective the therapy is in managing a specific condition.  

Joseph:

And how can CLL patients benefit from participating in clinical trials?  

Dr. Johnson:

Well, Joseph, participating in a clinical trial can provide access to new options that are not yet available to the public. Patients also receive high-quality care from the clinical trial healthcare team, as they are very closely monitored throughout the study. And participation contributes to the advancement of medical research, potentially benefiting future patients. 

Joseph:

That makes sense. When we reviewed my treatment options, you suggested several trials that could be a good fit for me, and we discussed the pros and cons. So, what should patients ask their team before joining a clinical trial?  

Dr. Johnson:

Let’s walk through several important questions to ask your healthcare team: 

  • What trials do you recommend for me and why? 
  • What is the purpose of the trial? 
  • What treatments and tests will I receive during the trial? 
  • What are the potential risks and benefits? 
  • Are there resources to help me learn more about the trial? 
  • How might this trial affect my daily life? 
  • Will I need to travel for treatment or tests? 
  • Finally, how long will the trial last, and what happens after it ends? 

Discuss these questions with your healthcare team to determine if a clinical trial is the right option for you. 

I also want to note that clinical trials are voluntary, and patients can decide to leave a trial at any time. The informed consent process educates participants about all potential risks and benefits and reviews their rights. Remember, you are at the center of your care.  

Joseph, can you share advice for patients as they learn more about trials and advocate for better care? 

Joseph:

I’d be happy to! Here are some additional steps to help you feel confident when considering clinical trials: 

  • First, educate yourself: Understand the basics of clinical trials and how they work. It’s important to gather your information using credible resourceslike the Patient Empowerment Network and The Leukemia & Lymphoma Society. 
  • Next, write down questions: Prepare a list of questions to ask your healthcare team. And download the guide that accompanies this video to review the questions Dr. Johnson suggested.   
  • Additionally, discuss goals: Be clear about your treatment goals and ensure you’ve had all of your questions answered before making a decision. 
  • Bring support: Have a loved one join you for appointments or discussions to help take notes and to provide support.  
  • Finally, stay informed: Keep up with the latest research and advancements in CLL treatments. As I mentioned, PEN and the LLS are great sources of information. 

Dr. Johnson:

These are excellent tips, Joseph! Thank you everyone for joining us. For more information and valuable resources, visit powerfulpatients.org/CLL.  

Lo que Debes Saber Sobre los Ensayos Clínicos de CLL

 

¿Qué papel juegan los ensayos clínicos en el tratamiento de la leucemia linfocítica crónica (CLL)? Este video animado explica los ensayos clínicos, revisa los beneficios de la participación del paciente y discute las preguntas que debe hacer a su equipo médico.

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Comprender los tipos de tratamiento de la CLL 


Transcript: 

Dra.  Johnson:

¡Hola a todos! Soy la Dra.  Johnson, una médico especializada en cánceres de la sangre. Bienvenidos de nuevo a la serie Colaborativa CLL de la Red de Empoderamiento del Paciente.  

Joseph:

Y yo soy Joseph, paciente de la Dra.  Johnson. Hoy, discutiremos un tema importante: loa ensayos clínicos de CLL. Hablaremos de qué son los ensayos clínicos, su papel en el avance de la investigación y cómo los pacientes pueden beneficiarse de participar en ellos. 

Dra.  Johnson:

Comencemos. Los ensayos clínicos son estudios de investigación que involucran a pacientes, y el objetivo es encontrar mejores maneras de prevenir, diagnosticar, o tratar enfermedades. Son esenciales para avanzar en el conocimiento médico y para llevar nuevos tratamientos a los pacientes. 

Joseph:

Gracias, Dra.  Johnson. ¿Y cómo exactamente los ensayos clínicos impulsan la investigación? 

Dra.  Johnson:

¡Buena pregunta! Los ensayos clínicos proporcionan datos sobre la seguridad y efectividad de nuevos tratamientos. También ayudan a los investigadores a comprender cómo funcionan diferentes terapias en diversos grupos de personas y aseguran que los tratamientos funcionen bien y no causen daño antes de que estén disponibles de manera generalizada.  

Los ensayos clínicos en fases tempranas se utilizan para determinar la seguridad del tratamiento, mientras que las fases posteriores investigan qué tan eficaz es la terapia para manejar una condición específica.  

Joseph:

¿Y cómo pueden beneficiarse los pacientes con CLL al participar en ensayos clínicos? 

Dra.  Johnson:

Bueno, Joseph, participar en un ensayo clínico puede brindar acceso a nuevas opciones que aún no están disponibles para el público. Los pacientes también reciben atención de alta calidad del equipo médico del ensayo, ya que son monitoreados muy de cerca durante todo el estudio. Y la participación contribuye al avance de la investigación médica, beneficiando potencialmente a futuros pacientes. 

Joseph:

Tiene sentido. Cuando revisamos mis opciones de tratamiento, me sugeriste varios ensayos que podrían ser adecuados para mí, y discutimos los pros y los contras. Entonces, ¿qué deberían preguntar los pacientes a su equipo antes de unirse a un ensayo clínico? 

Dra.  Johnson:

Repasemos varias preguntas importantes que debes hacerle a tu equipo médico: 

  • ¿Qué ensayos me recomiendas y por qué?  
  • ¿Cuál es el propósito del ensayo?  
  • ¿Qué tratamientos y pruebas recibiré durante el ensayo?  
  • ¿Cuáles son los posibles riesgos y beneficios?  
  • ¿Hay recursos para ayudarme a aprender más sobre el ensayo?  
  • ¿Cómo podría este ensayo afectar mi vida diaria? 
  • ¿Tendré que viajar para recibir el tratamiento o realizar pruebas?  
  • Finalmente, ¿cuánto tiempo durará el ensayo y qué pasará después de que termine? 

Discute estas preguntas con tu equipo médico para determinar si un ensayo clínico es la opción adecuada para ti. 

También quiero señalar que los ensayos clínicos son voluntarios, y los pacientes pueden decidir dejar un ensayo en cualquier momento. El proceso de consentimiento informado educa a los participantes sobre todos los posibles riesgos y beneficios y revisa sus derechos. Recuerda, tú estás en el centro de tu atención.   

Joseph, ¿puedes compartir algunos consejos para los pacientes que están aprendiendo más sobre los ensayos y desean abogar por una mejor atención? 

Joseph:

¡Con mucho gusto! Aquí algunos pasos adicionales para ayudarte a sentirte seguro al considerar ensayos clínicos: 

  • Primero, infórmate: Comprende los conceptos básicos de los ensayos clínicos y cómo funcionan. Es importante obtener tu información de recursos confiablescomo la Red de Empoderamiento del Paciente y la Sociedad de Leucemia & Linfoma. 
  • Luego, anota preguntas: Prepara una lista de preguntas para hacerle a tu equipo de atención médica. Y descarga la guía que acompaña este video para revisar las preguntas que sugirió la Dra.  Johnson.   
  • Además, discute tus objetivos: Sé claro sobre tus objetivos de tratamiento y asegúrate de que todas tus preguntas hayan sido respondidas antes de tomar una decisión. 
  • Lleva apoyo: Pide a un ser querido que te acompañe a las citas o discusiones para ayudarte a tomar notas y brindarte apoyo.  
  • Finalmente, mantente informado: Mantente al día con los últimos avances en la investigación y tratamientos para la CLL. Como mencioné, la PEN y la LLS son excelentes fuentes de información. 

Dra.  Johnson:

¡Estos son excelentes consejos, Joseph! Gracias a todos por acompañarnos. Para más información y recursos valiosos, visita powerfulpatients.org/CLL.  

¿Qué tratamiento es el Adecuado para tu CLL?

 

¿Cómo pueden los pacientes con leucemia linfocítica crónica (CLL) trabajar con su equipo médico para encontrar el enfoque de tratamiento adecuado para su enfermedad individual? Este video animado revisa pruebas importantes, factores que influyen en las opciones y ofrece consejos para las conversaciones con su proveedor.

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Transcript: 

Dra.  Johnson:

¡Hola de nuevo! Soy la Dra.  Johnson, una médico especializada en cánceres de la sangre. Y este es Joseph, quien vive con leucemia linfocítica crónica—CLL para abreviar. 

Joseph:

¡Hola a todos! En el video de hoy, la Dra.  Johnson y yo discutiremos los factores que influyen en la determinación del tratamiento más eficaz para la CLL de un paciente y el papel fundamental que puede desempeñar el análisis de biomarcadores para ayudar a tomar esas decisiones.  

Dra.  Johnson:

Exactamente, Joseph—elegir el tratamiento adecuado para CLL puede ser complejo y depende de características únicas en cada paciente. Estos factores pueden incluir: 

  • El estadio y agresividad de la enfermedad.  
  • La salud general del paciente, incluida su edad y cualquier condición coexistente. 
  • Cualquier síntoma que esté experimentando.  
  • Las características específicas de las células de CLL, como mutaciones genéticas o anormalidades cromosómicas. 

Aquí es donde entra el análisis de biomarcadores, Joseph. Este análisis implica estudiar las células cancerosas para identificar mutaciones genéticas o anormalidades específicas, conocidas como biomarcadores.  

Estos biomarcadores pueden proporcionar información valiosa sobre la enfermedad y cómo podría responder a tratamientos específicos. 

Joseph:

Bien. Entonces, Dra.  Johnson, ¿qué tipos de pruebas de biomarcadores son típicas para los pacientes con CLL? 

Dra.  Johnson:

¡Buena pregunta! Las pruebas comunes de biomarcadores para la CLL incluyen la identificación de mutaciones en el gen IGHV, mutaciones en el gen TP53, y anormalidades cromosómicas como deleciones en los cromosomas 11q y 17p. Los resultados ayudan a determinar la estrategia de tratamiento más eficaz.1 

Joseph:

Entendido. ¿Cómo afecta exactamente esta información al plan de tratamiento? 

Dra.  Johnson:

Bueno, comprender la presencia de mutaciones o anormalidades es crucial. Por ejemplo, los pacientes con una mutación TP53 o una deleción 17p pueden no responder bien a la quimioterapia estándar. En su lugar, las terapias dirigidas o tratamientos más nuevos podrían ser más efectivos. Tener esta información permite al equipo médico personalizar el plan de tratamiento para lograr el mejor resultado posible. 

Joseph:

Cuando fui diagnosticado, me realizaron pruebas de biomarcadores. Luego, la Dra.  Johnson y yo discutimos cómo los resultados podrían guiar mi plan de tratamiento. Me tranquilizó saber que el tratamiento estaba diseñado específicamente para mi enfermedad. 

Dra.  Johnson:

Absolutamente, Joseph. Asegurarse de que se hayan realizado todas las pruebas necesarias antes de comenzar el tratamiento es esencial. Joseph, ¿puedes compartir algunos consejos para discutir las opciones de tratamiento con tu médico? 

Joseph:

Claro, esto es lo que he aprendido: 

  • Primero, infórmate: Aprende sobre los tipos de pruebas de biomarcadores disponibles y qué pueden revelar sobre tu CLL. 
  • Luego, haz preguntas: No dudes en preguntarle a tu médico cómo los resultados de las pruebas afectarán tu plan de tratamiento. 
  • Y discute tus objetivos: Comparte tus preocupaciones sobre los efectos secundarios del tratamiento o el impacto en tu estilo de vida. 
  • Finalmente, no olvides llevar un sistema de apoyo: Pide a un ser querido que te acompañe a las citas para tomar notas y brindarte apoyo. 

Dra.  Johnson:

Esos son excelentes consejos, Joseph. Ser proactivo e informado puede marcar una gran diferencia en el manejo de tu CLL. 

Joseph:

Gracias por acompañarnos hoy. Para más información y recursos valiosos, visita powerfulpatients.org/CLL. ¡Cuídate y mantente empoderado en tu lucha contra la CLL! 

Comprender los tipos de tratamiento de la CLL

 

¿Cuáles son los enfoques comunes de tratamiento para la leucemia linfocítica crónica (CLL)? Este video animado revisa los tipos de tratamiento, las pruebas esenciales y proporciona orientación para participar en la planificación del tratamiento.

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Comprender los tipos de tratamiento de la CLL Guía


Transcript: 

Dra. Johnson:

¡Hola de nuevo! Soy la Dra. Johnson, aquí con otro vídeo de la serie Colaborar con CLL de la Red de Capacitación de Pacientes. En este vídeo vamos a repasar los tipos habituales de tratamiento de la CLL.  

Joseph:

Y yo soy Joseph, paciente del Dra. Johnson. ¡Bienvenidos! 

Cuando me diagnosticaron por primera vez, la Dra. Johnson me dijo que mi CLL aún no estaba lista para ser tratada y que me encontraba en el período de observación y espera. Me sorprendió esta información: me resultaba extraño que me diagnosticaran cáncer y no iniciara el tratamiento inmediatamente. Dra. Johnson, ¿podría explicarme este enfoque? 

Dra. Johnson:

Con mucho gusto. Dado que la CLL puede crecer lentamente en algunos pacientes, en lugar de iniciar el tratamiento de inmediato, el equipo sanitario del paciente controlará la enfermedad con citas periódicas y análisis de sangre. Y, como ha mencionado Joseph, esto se llama vigilar y esperar. 

Joseph:

Cierto. Y algunos pacientes pueden no necesitar nunca tratamiento mientras que otros pueden empezar la terapia más tarde.  Dra. Johnson, ¿cuáles son algunas de las razones por las que comenzaría el tratamiento? 

Dra. Johnson:

Cualquier persona con diagnóstico de CLL debe ser vigilada estrechamente, pero un aumento de los síntomas del paciente, anemia o recuento bajo de plaquetas podría indicar que ha llegado el momento de tratar la CLL. 

Además, algunos pacientes pueden tener un tipo de CLL de crecimiento más rápido que requiere tratamiento en el momento del diagnóstico. 

Joseph:

Y cuando llegó el momento de empezar mi tratamiento, recuerdo que revisamos juntos mis opciones, junto con los objetivos del tratamiento y los posibles efectos secundarios.   

Dra. Johnson:

¡Sí! Siempre es importante establecer objetivos de tratamiento con su médico. Los objetivos del tratamiento varían según el paciente y ayudan a determinar qué es lo mejor para su CLL particular y su estilo de vida. 

También debe someterse a todas las pruebas esenciales antes de elegir un enfoque. Los resultados de las pruebas pueden ayudar a orientar las decisiones y mostrar si un tratamiento concreto podría ser más eficaz para un paciente concreto. 

Bien, repasemos los tipos de tratamiento más comunes: 

  • Existe un enfoque comúnmente denominado F-C-R, que consiste en dos fármacos quimioterápicos que se combinan con un tratamiento dirigido denominado anticuerpo monoclonal.  
  • Además, existen otras clases de tratamientos farmacológicos actualmente aprobados para tratar la CLL. Entre ellos se incluyen: 
  • Inmunoterapia, incluidos los anticuerpos monoclonales 
  • Y terapias dirigidas 
  • Si la CLL no responde a la quimioterapia o a la terapia dirigida, su médico puede plantearle opciones como el trasplante de células madre, la terapia con células T CAR o un ensayo clínico. 

Joseph:

Cuando llegó el momento de tratar mi CLL, la Dra. Johnson me ayudó a entender lo que había disponible para mí.  Entonces, ¿cómo puede sentirse seguro a la hora de considerar sus opciones de tratamiento? 

  • En primer lugar, considere la posibilidad de consultar a un especialista en CLL que conozca bien TODOS los enfoques terapéuticos disponibles, incluidos los ensayos clínicos. 
  • Establezca objetivos de tratamiento con su equipo y haga preguntas si no está seguro del plan propuesto. 
  • Pregunte si le han realizado todas las pruebas esenciales y comente cómo pueden afectar los resultados a sus opciones de tratamiento. 
  • Por último, solicite recursos educativos para aprender más sobre cada enfoque por su cuenta. Ver vídeos como éste es un buen comienzo. Además, puede visitar powerfulpatients.org/CLL para obtener más recursos. 

Dra. Johnson:

Buen consejo, Joseph. También debería llevar a un amigo o ser querido a sus citas, para que puedan absorber los detalles y tomar notas en equipo. 

Joseph:

Gracias por acompañarnos. No olvide descargar la guía que acompaña a este vídeo: puede ayudarle a retener lo que hemos tratado. 

Conozca su diagnóstico de CLL

 

¿Qué deben saber los pacientes con leucemia linfocítica crónica (CLL) sobre su diagnóstico? Este video animado explica qué es la CLL, cómo se diagnostica y ofrece consejos para ser proactivo en las decisiones relacionadas con el cuidado.

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Conozca su diagnóstico de CLL Guía


Transcript: 

Dra. Johnson:

¡Hola de nuevo! Soy la Dra. Johnson, y soy una médico que se especializa en leucemia linfocítica crónica, o C-L-L. Y este es Joseph, uno de mis pacientes. ¡Bienvenidos de nuevo a la Serie Colaborativa de CLL!

En el primer vídeo, Joseph y yo hablamos del importante papel que desempeñan los pacientes en las decisiones sobre su atención y tratamiento. 

Joseph:

Así es. Y desde el principio, los pacientes y sus cuidadores deben entender lo que el diagnóstico realmente SIGNIFICA. Dra. Johnson, ¿podría explicarnos qué es la CLL?  

Dra. Johnson:

Con mucho gusto. La CLL comienza en las células de la médula ósea – glóbulos blancos llamados linfocitos – y luego pasa a la sangre. Es el tipo más frecuente de leucemia en adultos.1 

La enfermedad suele diagnosticarse mediante un análisis de sangre y confirmarse con una biopsia de médula ósea. Cada paciente es diferente, pero algunas personas pueden presentar síntomas que lleven a realizar las pruebas de detección de la CLL. 

Joseph:

Y cuando me diagnosticaron, tenía frecuentes resfriados e infecciones sinusales. Dra. Johnson, ¿cuáles son otros síntomas? 

Dra. Johnson:

Como ha mencionado Joseph, la CLL conlleva un alto riesgo de infección. Otros síntomas comunes pueden incluir: 

  • Fatiga 
  • Sudores nocturnos 
  • Aumento del tamaño de los ganglios linfáticos o del bazo 
  • Fiebre  
  • Y pérdida de peso involuntaria 

Joseph:

Y es importante obtener un diagnóstico preciso para comprender cómo puede comportarse la CLL de cada paciente. Dra. Johnson, ¿qué pruebas le ayudan a conocer mejor las características específicas de la enfermedad de un paciente?  

Dra. Johnson:

Esto es importante, ya que no hay dos pacientes con CLL iguales. Por lo tanto, debemos realizar pruebas esenciales en el momento del diagnóstico para obtener más información sobre cómo puede evolucionar la CLL de un paciente, y los resultados pueden incluso ayudar a orientar las opciones de tratamiento. Además del hemograma completo, las pruebas pueden incluir: 

  • Pruebas de citometría de flujo 
  • Pruebas citogenéticas  
  • Hibridación fluorescente in situ (FISH) 
  • Pruebas moleculares  
  • Y pruebas de imagen, como un TAC 

Su médico debe revisar los resultados de estas pruebas con usted y asegurarse de que comprende cómo influyen en sus decisiones sobre el cuidado y el tratamiento de la CLL. 

Joseph:

¡Correcto! Es una buena idea comentar los resultados con su médico antes de iniciar las conversaciones sobre las opciones de tratamiento. Entonces, ¿qué otras medidas proactivas puede usted tomar para comprender su diagnóstico de CLL? 

  • Asegúrese de comprender las características específicas de su CLL, cómo afectará a su estilo de vida y si existen síntomas a los que deba prestar atención. 
  • Pregunte si se ha sometido a todas las pruebas clave y comente los resultados con su médico. 
  • Averigüe si existen indicadores de que su CLL es de alto riesgo o de crecimiento rápido.  
  • Y por último, cuando llegue el momento de tomar decisiones sobre el tratamiento, pregunte qué pruebas deberán repetirse. 

Dra. Johnson:

¡Muy buenos consejos! No te olvides de descargarte la guía de recursos que acompaña a este vídeo: ofrece una visión general de la información que hemos tratado. 

Joseph:

También puede visitar powerfulpatients.org/CLL para ver más vídeos con la Dra. Johnson y conmigo. Gracias por acompañarnos. 

Collaborate | Which Treatment is Right for YOUR CLL?

How can chronic lymphocytic leukemia (CLL) patients work with their healthcare team to find the right treatment approach for their individual disease? This animated video reviews important testing, factors that impact options, and advice for discussions with your provider. 

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How Can You Engage in Your CLL Care? 


Transcript:  

 Dr. Johnson:

Hello again! I’m Dr. Johnson, a physician specializing in blood cancers. And this is Joseph, who is living with chronic lymphocytic leukemia—CLL for short. 

Joseph:

Hi everyone! In today’s video, Dr. Johnson and I will discuss the factors that go into determining the most effective treatment for a patient’s CLL and the critical role that biomarker testing can play in helping to make those decisions. 

Dr. Johnson:

Exactly, Joseph—choosing the right treatment for CLL can be complex and depends on characteristics that are unique to each patient. And these factors may include: 

  • The stage and aggressiveness of the disease.  
  • The patient’s overall health, including their age and any coexisting conditions. 
  • Any symptoms they may be experiencing.  
  • And the specific characteristics of the CLL cells, such as genetic mutations or chromosomal abnormalities. 

Joseph:

So, Dr. Johnson, how do these genetic mutations and abnormalities impact treatment choices? 

Dr. Johnson:

This is where biomarker testing comes in, Joseph. This involves analyzing the cancer cells to identify specific genetic mutations or abnormalities, referred to as biomarkers.  

These biomarkers can provide valuable information about the disease and how it might respond to specific treatments. 

Joseph:

OK. So, Dr. Johnson, what kinds of biomarker tests are typical for CLL patients? 

Dr. Johnson:

Good question! Common biomarker tests for CLL include identifying mutations in the IGHV gene, TP53 gene mutations, and chromosomal abnormalities like deletions in chromosomes 11q and 17p. The results help determine the most effective treatment strategy.

Joseph:

Got it. So, how exactly does this information impact the treatment plan? 

Dr. Johnson:

Well, understanding the presence of mutations or abnormalities is crucial. For example, patients with a TP53 mutation or 17p deletion may not respond well to standard chemotherapy. Instead, targeted therapies or newer treatments might be more effective. Having this information allows the healthcare team to personalize the treatment plan to help achieve the best possible outcome. 

Joseph:

When I was diagnosed, I underwent biomarker testing. Then Dr. Johnson and I discussed how the results could guide my treatment plan. It reassured me that the treatment was tailored to my specific disease. 

Dr. Johnson:

Absolutely, Joseph. Ensuring you have had all the necessary tests done before starting treatment is essential. Joseph, can you share advice for discussing treatment options with your doctor? 

Joseph:

Sure, here’s what I’ve learned: 

  • First, educate yourself: Learn about the types of biomarker tests available and what they can reveal about your CLL. 
  • Next, ask questions: Don’t hesitate to ask your doctor how test results will impact your treatment plan. 
  • And discuss your goals: Share your concerns about treatment side effects or the impact on your lifestyle. 
  • Finally, don’t forget to bring a support system: Have a loved one accompany you to appointments to help take notes and to provide support. 

Dr. Johnson:

Those are great tips, Joseph. Being proactive and informed can make a big difference in managing your CLL. 

Joseph:

Thank you for joining us today. For more information and valuable resources, visit powerfulpatients.org/CLL. Take care, and stay empowered in your CLL journey! 

Collaborate | How Is CLL Treated?

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 | Understanding YOUR CLL Diagnosis

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

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

Descargar guía de recursos

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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! 

Collaborate | Understanding Your Role in Your CLL Care Resource Guide

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Collaborate | Understanding Your Role in Your CLL Care

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!  

Start Here: Bridging the CLL Expert and CLL Patient Voice

Chronic lymphocytic leukemia (CLL) can sometimes feel overwhelming and complicated, but what can patients and care partners do to help improve their care? With this question in mind, the Patient Empowerment Network initiated the START HERE CLL program, which aims to close the gap in the expert and patient voice to build empowerment. 

START HERE CLL Program Resources

 The program series includes the following resources:

Lisa Hatfield and Dr. Danielle Brander

Patient-Expert Q&A Webinar Topics and Key Takeaways

In the Patient-Expert Q&A webinars, CLL experts Dr. Ryan Jacobs from Levine Cancer Institute, and Dr. Danielle Brander from Duke Cancer Institute shared their expert knowledge to help patients and care partners fortify their knowledge and confidence. The webinars provided some in-depth discussion along with key takeaways derived from questions submitted by patients. Some of the discussion covered:

Among some key points from the webinars, Lisa and Dr. Jacobs discussed the importance of genetic markers. Dr. Jacobs recommended CLL patients ask their doctor about their prognostic markers. “The one that is still potentially affecting outcomes, even with our novel treatments, are chromosome 17 aberrations, which stately are rare in the initial diagnostic setting, that or a TP53.”

The watch-and-wait phase of CLL, also called active surveillance, is a common term heard by CLL patients. However, there are actually two types of CLL. “While some CLL patients experience very gradual disease progression and are actively monitored during a watch-and-wait phase, other patients may experience a more expedited CLL progression and will need more frequent treatment.”

Treatment advancements for CLL have been moving forward over recent years. Dr. Brander shared her perspective about the advancements. “So over the last decade or even the last five years, for patients diagnosed with CLL, there’s been a very encouraging and marked change in the available treatments…not that many years ago we generally only had chemotherapy or chemotherapy combined with these antibody targeted treatments that we call immunotherapy sometimes. But in the last 5 to 10 years we’ve seen quite a remarkable change in treatments that target, meaning often they go after pathways or ways that the CLL cells have learned to grow or have learned to not die the way that normal cells should, die after certain time points.” 

Vaccines for those with CLL have gathered more visibility in recent years with COVID-19. Dr. Jacobs addressed some questions about vaccination and shared, “I in general am recommending, as does the CDC, to get boosted every six months for patients with any level of immune suppression and having CLL qualifies you as that. And then I recommend all of the general vaccines that come with age, like, for example, the Shingrix vaccine for shingles is now safe to give to CLL patients because it’s a conjugate vaccine, it’s not a live virus vaccine. So we’re lucky now with just standard vaccines in the U.S., there are no live virus vaccines that the CLL patient has to worry about anymore, so I definitely encourage shingles, pneumonia vaccines, boosting for COVID. We’ll see if we get an RSV vaccine, that sounds like it’s on the horizon. Flu, of course.”

Worries about CLL progression are felt by many patients, and there are some ways to stay alert for warning signs. Expert Dr. Jacobs explained signs of CLL progression including new or worsened drenching night sweats, significant changes in a patient’s ability to function, and major changes in lymph nodes over a short period. Dr. Jacobs also shared some research updates for treatments that have shown success against progression to Richter’s transformation. “…I’ve been having some recent success using CAR T in those patients, and also now have a, I was thankfully getting it sort of off-label approval to do that, but now I actually have a clinical trial investigating axicabtagene ciloleucel (Yescarta) in those patients.

Some CLL patients wonder about whether they can take a break from treatment. Dr. Brander addressed this question about BTK inhibitors. “…BTK inhibitors are given continuously, meaning, at least so far, the standard way we recommend of those treatments is that they’re taken every day, either once or twice a day, depending on which BTK inhibitor, and they’re taken every day. Unless patients run into progression, meaning the CLL learns to grow through its resistance or patients run into side effects that despite maybe team’s recommendation of changing the dose or holding the medications, that it’s just the medication is just not tolerate.”

Many CLL patients also wonder about the impact of exercise on their treatment response and their duration of treatment response. Dr. Brander explained about the impact of exercise. “I think certainly trials or studies really need to be continuing to look at this, because I think there likely are things that we can be more specific to patients about. There are studies looking at physical fitness and exercise regimens not necessarily specific to CLL, although there are studies being done in that space, but to other cancers showing that physical activity and exercise can help even for patients not on treatment maintain control of their cancer. So general daily activity and exercise are important in studies that look at how do you tailor that to an individual I think are important too.

Whether patient fatigue is originating from CLL or from symptoms of old age can sometimes be difficult to determine. Dr. Jacobs shared some insight about fatigue. “Fatigue, I’m not as confident when that’s the only issue that a patient’s having. I try to differentiate between fatigue from other causes and old age, and specifically to CLL. They try to put it as a metric and say, if you’re having to spend half the day or more just lying around and you’re not able to do your normal activities of daily living, like that’s a severe level of fatigue and treatment should be considered. I’m looking for somewhat of a precipitous decline, not necessarily just kind of the gradual fatigue that you might more relate to aging.

Some program participants provided valuable testimonials and insights on what they learned from the START HERE CLL Patient-Expert Q&A webinars:

Testimonials:

  • I love PEN webinars because I feel I have a direct connection with the best experts. I have many questions for my team after this program, thank you.”
  • “This program was stellar. I learned a lot that I have to address with my doctor.”
  • “I have a greater comfort level with promising treatment options.”
  • “I was most interested in learning about treatment options for relapsed patients and Dr. Jacobs provided great information. THANK YOU!”
  • “This was very helpful as I consider how to support my sister who has been diagnosed with CLL.”

Learnings:

  • “What BTK and BCL-2 inhibitors are…How Fish looks for DNA for Leukemia cells. And how exercise can help any cancer patient. Thanks for the program!”
  • “Even though I am Watch & Wait, I appreciated the information and explanation of the latest treatments.” 
  • “Fantastic program. Learned about many reasons docs decide not to treat.”
  • “I learned about some potential treatment options should I relapse.”

Many other questions were raised during the CLL Patient-Expert Q&A webinars. We hope you can use these valuable CLL resources to build your knowledge and confidence toward becoming a more empowered patient or care partner.

PODCAST: CLL Patient Expert Q&A: Dr. Danielle Brander

 

Download Resource Guide   |  Descargar Guía en Español

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Transcript:

Lisa Hatfield:

Welcome to this START HERE, Patient Empowerment Network program. This program bridges the CLL expert and patient voices, enabling patients and care partners to feel comfortable asking questions of their healthcare team. Joining me is Dr. Danielle Brander, a CLL specialist serving as assistant professor in the Division of Hematologic Malignancies and Cellular Therapy at Duke University Medical Center. Dr. Brander directs the chronic lymphocytic leukemia or CLL and lymphoma program and serves as primary investigator for CLL focus clinical trials. Thank you so much for joining us, Dr. Brander.

Dr. Danielle Brander:

Thanks for having me, Lisa.

Lisa Hatfield:

The world can be complicated, but understanding your chronic lymphocytic leukemia diagnosis and treatment options doesn’t have to be. The goal of START HERE is to create actionable pathways for getting the most out of CLL treatment and survivorship. Before we get started, please remember to download the program resource guide via the QR code. There is great information there that will be useful during this program and after. So let’s get started. Dr. Brander, I’d like to talk about what’s on the CLL treatment radar. There’s a lot going on in terms of emerging treatment options, clinical trial data, and other learnings from the CLL community. Before we jump into a detailed discussion, can you provide an explanation of what CLL is?

Dr. Danielle Brander:

Absolutely. So CLL, or chronic lymphocytic leukemia, we generally think of as blood cancer. But often as you hear the ending of that, the name leukemia, we also think of it as a lymphoma, meaning patients can have the spectrum of an elevated white count like you might think of in terms of a leukemia. They can also, like a lymphoma though, have enlarged lymph nodes or spleen. And often patients are diagnosed incidentally and that just means that they’re…in seeing their physician or their medical team for other reasons. And they might have had a blood test, and their white counts elevated.

Or they might notice they have a tiny enlarged lymph node or found on screening for other cancers, for example. And so the takeaway there is that many patients don’t necessarily have symptoms and certainly often many patients don’t have reasons to need to start treatment at the time they’re diagnosed. So in terms of what it is today, I think more and more patients are being diagnosed both because it is something that comes about as patients get older, but also because it’s found during routine other visits. And so more and more patients I think are found incidentally that way.

Lisa Hatfield:

Okay, thank you. So just a follow-up question to that, if a patient goes into their primary care provider and finds something unusual that might indicate CLL, will they be referred to a hematologist right away at that point? Usually?

Dr. Danielle Brander:

So that is a great question. Often they are, for example, if they’re noted to have a high white count or, specifically a type of white cell called lymphocytes. However, there are many things that can cause that or cause a small lymph node. And so, some primary care appropriately, if those changes are small and they could be due to other things like an infection, for example, then their primary care might want to follow up first. And if things go away, it may not be related to a cancer at all.

But if it’s something that persists or it seems very out of range, or primary care, who, you know, are specialists and seeing kind of changes all the time, and may say this seems a little bit out of range, then even before something’s diagnosed, patients might be referred to a hematologist or an oncologist to help with that workup. But often because primary care is so astute in seeing these things, they may counsel patients to say, let’s send this test or this test to get things going while we’re speaking to a hematologist or oncologist.

Lisa Hatfield:

We have CLL patients and care partners who are newly diagnosed in active treatment, watch and wait, and also living well with their disease. Joining this program no matter where you are in your CLL journey, START HERE provides easy-to-understand, reliable, and digestible information to help you make informed decisions. So, Dr. Brander, we’re going to get into a more detailed discussion now of CLL. Can you talk a little bit about the novel pathways and targets that are currently under investigation in CLL, and what are the most important highlights from those for patients and their families and care partners?

Dr. Danielle Brander:

Yes. So over the last decade or even the last five years, for patients diagnosed with CLL, there’s been a very encouraging and marked change in the available treatments that is, you know, not that many years ago we generally only had chemotherapy or chemotherapy combined with these antibody targeted treatments that we call immunotherapy sometimes.

But in the last 5 to 10 years we’ve seen quite a remarkable change in treatments that target, meaning often they go after pathways or ways that the CLL cells have learned to grow or have learned to not die the way that normal cells should, die after certain time points. The two main categories of treatments that are approved for CLL treatment, either for patients as a first treatment or patients that have had treatment before including prior chemo or other agents are called BTK inhibitors or BCL-2 inhibitors.

BTK is something inside the leukemia cells. It’s also in some of our other cells. But in the CLL cells particularly, they’re very sensitive in needing that protein. So in targeting that BTK inhibitors keep the cells from getting the normal signals that they need to stay alive, and so the lymph nodes that are big get smaller, a spleen that might be big get smaller, white count eventually comes back down, for example. And those BTK inhibitors have also already encouragingly changed over recent years.

So there was…you’ll hear people say first generation, these were the first inhibitors that came out, that was a drug called ibrutinib (Imbruvica), which is still around. And then there are second generation that are approved that have come out as first treatment or treatment for previously patients that receive treatment.

Those second-generation BTK inhibitors are called zanubrutinib (Brukinsa) and acalabrutinib (Calquence) that are approved. The main other approved category of these targeted treatments I mentioned is venetoclax based treatment. And that targets something different, that targets a set of proteins inside the cell that tell the cell to stay alive too long. And so you have this accumulation and venetoclax targets that pathway. And the last thing I’ll mention about the BTK inhibitors that’s emerging is now there are trials of what are called non-covalent BTK inhibitors.

So they work in a different way, they go after BTK and so that they can work. The non-covalent, even for patients where the first and second-generation, traditional covalent BTK inhibitors I mentioned stop working, those are not yet approved officially for CLL, though they’re approved in mantle cell lymphoma. That’s a drug called pirtobrutinib (Jaypirca), that’s a non-covalent BTK. And the reason that emerging set of treatment, as I mentioned, is important is because it can work for patients where the first or second-generation covalent BTK inhibitors stop working. The venetoclax (Venclexta), as I mentioned, works by a different mechanism. So patients, of course, where the BTK stopped working, in many cases venetoclax can be helpful as well.

Lisa Hatfield:

Great. Thank you so much. So I read a little bit, I did a little research on trials that you’re involved in, and there is a trial the EVOLVE CLL trial, and I wonder if you can talk about that a little bit because I think it is exciting for patients to hear that there might be an option for earlier intervention. And I’m not sure if you’re allowed to talk about any results yet, but if you can speak to results, that would be great to hear about those results too.

Dr. Danielle Brander:

Well, yes and no, thank you for bringing this up because this is very important. As you mentioned, it’s called the EVOLVE study. It’s led by a national cooperative group called SWOG, meaning there are lots of places that it’s available, not just larger centers, but smaller oncology centers as well. And this is to look at what’s called early intervention, meaning as we spoke about before, most patients with CLL don’t need treatment at the time that they’re diagnosed. The reasons for treatment are, we call those treatment indications are based on three main categories that I’ll just review. For some patients, it’s new or progressive symptoms like weight loss or, very symptomatic limiting life day-to-day activities like night sweats or fatigue, for example, that’s the first category of reasons some patients might need treatment is unmanageable side effects.

The second main category is if the lymph nodes get very large or impacting on organ function, or the same for the spleen, it’s getting very large to a certain size, or it’s affecting your ability to eat regular meals or losing weight. And then the last category of treatment indications that we generally wait to start treatment for are if it’s affecting the normal blood count.

So there’s not one magic white count where patients need to start treatment, but almost like weeds in a garden, if those CLL cells are crowding out the red blood cells, so the hemoglobin’s falling or it’s crowding out the platelets, so the platelets are crowding and can’t grow and reach a certain threshold, then we recommend treatment. Of course, there are scattered other reasons, but those are the main three categories. And the reason of waiting to start until those are met is because historically trials have been done to look at waiting for those indications versus treating around the time of diagnosis.

Those trials so far have included chemotherapy by itself or chemotherapy in combination. And most recently there was a trial looking at first-generation ibrutinib that was given continuously. And so far there’s been no survival. So no life expectancy benefit to early treatment versus waiting for those indications. And the other reason generally not treating all patients is because some patients never require treatment, about a quarter of patients. So if we offer treatment to everybody, at the time of diagnosis, there are patients that would get treatment that would be exposed to side effects and never needed. But what the EVOLVE study is uniquely looking at is randomizing. And randomizing means some patients will get treatment and some patients will wait until those traditional reasons to need treatment. But for those randomized to receive therapy, it’s that venetoclax based treatment combined with this antibody called obinutuzumab (Gazyva).

And the way that treatment is given for patients, is the same way it’s given for patients who outside of the trial need treatment, meaning they get the antibody infusion, then they get the venetoclax pill, but it’s for a fixed duration, meaning a total of one year of treatment. The trial is also only for patients with higher-risk CLL. So as I mentioned, some patients never need treatment, some patients do, some patients need it quicker. So rather than looking at this trial and saying all patients, including those with CLL, that’s likely to be slower-growing. The EVOLVE trial is only for patients who are more likely to need treatment in the next couple of years.  And the way that’s determined is a score called the CLL-IPI score, and CLL-IPI tries to identify patients more likely to need treatment in the next couple of years by a couple of key factors.

Stage at the time of diagnosis, it looks at age, and it looks at key factors of the leukemia itself, including something called deletion 17P or TP53, because that marker in the cells is a high risk of eventually needing treatment.  So to answer your question, what EVOLVE is looking at is taking higher-risk patients, so patients rather than all patients more likely to need treatment anyway, and around the time of diagnosis, randomizing to either be treated or to follow the traditional, sometimes called watch and wait or dynamic monitoring until they reach traditional markers. And ultimately, and it’ll likely take many years to look at, ultimately the question is looking at if that helps prolong patient survival by having higher-risk patients receive that fixed-duration treatment earlier in time. We don’t yet have any results or any results to share, because the study is still enrolling.

But again, I think it’s something for patients to be aware of, because it does look at the higher risk patients. But around a year, it has to be within a year of diagnosis. So patients who are newly diagnosed, the question to ask your oncology team is “Do I qualify?” if it’s something you’re interested for, and they’ll help walk you through that. If you haven’t had markers checked, for example, it might be a good time to ask about that, to see if this is something would be available, even if not available though, it does create a time to talk to your team about the markers, because those can inform regardless of trial or not maybe what to expect in coming years and likelihood of treatment.

Lisa Hatfield:

Great, thank you for that. So as a cancer patient, one of the biggest questions I had when I was diagnosed, you hear the word “cancer” or in this case “CLL leukemia.”Two questions. One of them, is there a cure for CLL? And if not, are any of the…are there any trials looking at a cure for CLL?

Dr. Danielle Brander:

Yes. Excellent. An understandable question. Traditionally, we say that CLL or others slower-growing, or sometimes you’ll hear the term indolent lymphomas, do tend to be slower-growing.  Some patients don’t need treatment. But the flip side of that is we generally think of them as not curable, that they’re a chronic condition and that treatment, the goal of treatment is to knock it down and relieve whatever symptoms or indications or reasons you’re starting treatment are.

But at some level, we historically think of CLL as either eventually coming back or sticking around, so to speak. However, I think most oncologists, most those in the field, feel that some of the treatments that are around or in combination, that we’re going to have some patients that have maybe what a term might be functional cure or individual, cure-like condition.

Meaning if our newer treatments for some patients can knock down the CLL so much that it either doesn’t come back or take so long to even show itself again, in a way that serves as what the purpose of cure, really is, which is to get it down to levels that it’s not causing problems or not coming back, for the lifetime of the patient. Bone marrow transplant is the only therapy historically that has been cured, has offered a cure for some patients. The downside and the reason that most patients aren’t referred to for bone marrow transplant is the risk side of it. Meaning, unfortunately, a bone marrow or stem cell transplant has such a high risk of directly causing side effects.

That could be life-limiting or chronic side effects from the transplant itself versus the agents available now that we aren’t using or referring to bone marrow transplant nearly as much, but I think it’s really encouraging what we’re seeing in responses. So we talked already about those main categories of BTK inhibitors or venetoclax, I didn’t yet talk about, but there are many trials that have looked at those in combination, or CAR T, for example, or bispecific antibodies that are knocking down the CLL to such low levels. But the hope is that serves as a way of functional cure. But it’s going to take time to see if that’s the case. But we’re all very encouraged and really believe that that’s on the horizon.

Lisa Hatfield:

Great. Thank you so much. And even a functional cure sounds really hopeful, so I’m happy to hear that term. Thank you. And I want to be cognizant of your time and the time of everybody watching. So we are going to move into some of the questions that we’ve received from you watching this, patients. Remember, as patients, we should always feel empowered to ask our healthcare providers any and all questions we might have about our treatment and prognosis. Please remember, however, this program is not a substitute for medical care and always consult with your own medical team. So, Dr. Brander, let’s start here. How do you explain, you kind of covered this a little bit, CLL treatment options and prognosis to your newly diagnosed patients? And I think that the prognosis piece is really important, especially if they do start treatment. 

Dr. Danielle Brander:

Sure, absolutely. So, what are the things we’re looking for in terms of needing treatment?  Because some of those, especially the symptoms we’re noting a lymph node or spleen, for example, or symptoms of anemia, which is low red cells or bleeding from low platelets, it’s helpful for patients to understand what we’re looking for, but, of course, in the time between visits those are the things we want to help patients with if they notice.

And so we encourage them all the time to call our triage or send us, you know, most electronic medical records now, have ways to send your team a message. And we want to know about that from patients in between visits. In terms of prognosis, as I mentioned before, there are other CLL-specific labs usually on the blood, meaning a regular blood draw.

Most patients don’t need another lymph node biopsy or a bone marrow biopsy, though that happens in some cases. And two of those or some of those key markers I mentioned before, but they test in the leukemia, there’s one test called the FISH, F-I-S-H, it’s not specific to CLL, we use it in other cancers. But it’s to look for specific changes in the leukemia genomics, meaning the DNA, the genetic material of the leukemia, not genetics you’re born with, but the cancer itself.

And there are specific patterns and that can be helpful as I sit down with patients to say this isn’t 100 percent, but this is kind of what to expect and likelihood of needing treatment over the next couple of years. There’s another test called IGHV, another mutation test TP53 kind of beyond this to go over right now, but as you mentioned, I think it’s important to meet with your medical team and say, ‘How does this pertain to me specifically?”

In terms of prognosis, I think there’s two parts to that of understanding what to expect. There’s likelihood of needing treatment, there’s likelihood of time to treatment, and those kind of markers and staging system help in a good way. Right now, our historical expectations, meaning 5 or 10 years ago, we could often also sit with patients and say, “This is the prognosis in terms of survival.” Expected life expectancy on average, but in a good way, most of our systems nowadays with the newer treatments likely vastly underestimate patient survival, meaning those systems were designed when we only had chemotherapy treatments.

Now, we know patients even with the highest risk markers, the faster progressions are living, you know, years and years beyond what was expected with chemotherapy. So I just caution especially materials around from just a couple of years ago that likely they don’t pertain, but they can be helpful in knowing what to expect.

Lisa Hatfield:

Great, thank you for that. Answering that question. We have a couple of questions about BTK inhibitors, and you already talked a little bit about the role of those and why they’re significant in treating CLL. But another patient’s asking about the, of course, a lot of patients wonder, what are the side effects? They hear chemo and like, “Oh, my gosh, the side effects are going to be off.” Can you talk about the side effects and even maybe some unusual side effects that you’ve heard of from patients when using the BTK inhibitors?

Dr. Danielle Brander:

Sure, absolutely. And so again, really important, these are things that as we maybe anticipate patients are going to start treatment, this is a long discussion of deciding between treatment, for example, as first treatment. There’s no trial saying one path is necessarily better than the other. So we try to individualize choosing between BTK inhibitors or that venetoclax-based therapy I mentioned. Some of that though comes about and what expected side effects are expected side effects for the individual. I try for patients to hear it from myself, other members of the team, the nurse, our pharmacist, for example.

And so patients shouldn’t feel overwhelmed to keep asking about what to expect or new side effects. There are some side effects we talk about regardless of the treatment. So I’ll just point out, anytime you’re starting treatment, you’ll hear the team talk about risk for infection, monitoring for fevers, reaching out to us about those kinds of side effects, lower blood counts that can happen regardless, not specific to BTK though it can happen there as well.

There’s some specifically though with BTK inhibitors, we ask patients to watch out for. Some BTK inhibitors can cause some cardiovascular side effects, meaning watching out for funny beating of the heart or what we call palpitations, skipped beats. There can be arrhythmias, some patients can have with time elevation in their blood pressure, for example. And then risk for bleeding, meaning BTK inhibitors affect how the platelets stick together similar to what aspirin does.

So the platelet levels may be normal but patients might have easier bruising, just generally manageable. But if there’s any kind of bleeding, certainly the team should be aware. It’s also the reason though, if you’re on a BTK inhibitor and you have a planned surgery or procedure, let your team know, because we may recommend or a lot of times recommend holding the medication before and after certain surgeries or procedures.

Other side effects can be muscle or joint aches. Some patients have some gastrointestinal side effects like looser stools or sensitivities to certain food causing looser stools, for example. And then there are some that are specific to the individual BTK inhibitor. This is the one point I’ll mention that first-generation BTK inhibitor ibrutinib, part of the reason for the second-generation zanubrutinib and acalabrutinib is not necessarily of them working better but to have less of these side effects that I just mentioned.

Lisa Hatfield:

Great, thank you for that. So this patient is telling us that he’s trying to plan life while living with cancer. It’s a challenge. It’s hard to know where to start. Can some patients go off of ibrutinib? I don’t say…ibrutinib after five years and enter a watch-and-wait kind of program. And will they be monitored during that time too, if they ever do go off of the medication?

Dr. Danielle Brander:

Yeah. So again, more excellent, excellent questions. So of those main categories of treatment, the BTK inhibitors are given continuously, meaning, at least so far, the standard way we recommend of those treatments is that they’re taken every day, either once or twice a day, depending on which BTK inhibitor, and they’re taken every day. Unless patients run into progression, meaning the CLL learns to grow through its resistance or patients run into side effects that despite maybe team’s recommendation of changing the dose or holding the medications, that it’s just the medication is just not tolerated.

In those cases, there are cases where we do recommend stopping the treatment because of side effects. And the key there is that patients if depending how long they’ve been on treatment or how their CLL is responding, might not need to go on to the next treatment right away.

So to answer this patient’s question, if they were to run into a side effect that wasn’t manageable, there are patients where we say, stop treatment and let’s just watch things, see if you need treatment, if your CLL has no other reason to jump into the next therapy. And there have been encouraging things that we’re learning and that I think are hopeful to this patient’s question, which is maybe in the future there are patients where we proactively can tell them to stop after a certain time because of what we’ve learned for patients so far. But at the current moment in time, we don’t tell patients to stop at a certain amount of time.

But there are trials that are looking at that after a certain number of years. And there are also trials that have followed patients who have stopped therapy and some of those patients, as I mentioned, who are told to stop treatment due to other side effects or other reasons, may go a long time, a couple of years before they need to start therapy.

Lisa Hatfield:

Okay, great. Thank you. I’m going to add one little question there too, if you don’t mind. So we’ve talked about trials a little bit, and I know that patients can go to clinicaltrials.gov, but what if a patient lives in an area that doesn’t have a major academic center or maybe trials aren’t being done very much in their area? Do you have a recommendation for patients? Should they just ask their doctor about trials if say, for example, they want to go on one of these trials? What recommendations do you have for those patients?

Dr. Danielle Brander:

Yes, absolutely. Starting with your healthcare team is very helpful to navigate to the right site. You mentioned the SWOG trial, which is online at a lot of the community and academic sites. So I would say also don’t or I encourage patients that just if they’re at a smaller site, it doesn’t mean there aren’t trials available. And then without going into all the individual, I guess societies and advocacy networks I really think that that’s been a tremendous benefit for patients is that there are societies through, you know, having leukemia or lymphoma, for example, that list or want to help patients connect them to what available trials there are.

Because while we think of trials as maybe the treatment, the reality is that a lot of trials are looking at other things too, patient’s physical function, patient’s other aspects of life besides the drug itself. So yes, I think that’s a great question for patients to be thinking about.

Lisa Hatfield:

Great, thank you. And you’re right, talking about access to trials is a whole other issue that will probably take up an entire program. But there are the advocacy networks out there, even Patient Empowerment Network. We can maybe help with that a little bit too. So we have another patient who is concerned about chances of relapse and is asking if there are any lifestyle changes through diet and supplements or anything that you can speak to that may enhance their response or their duration response to the treatment?

Dr. Danielle Brander:

Yeah. So a very very great question to bring about. And this is the one area, understandably where many of us feel frustrated because we can’t tell patients specifically that this trial has been done and says this specific diet is helpful or this specific lifestyle change is helpful to make the treatment work for longer. I think some of that is because some of the general advice we give meaning maintaining daily activity or a well-balanced diet sound non-specific or simple, but I think do help in patients staying in an overall general health wellness so that they can benefit from the treatment and potentially have less side effects from the therapy.

But getting back to the question we just talked about, I think certainly trials or studies really need to be continuing to look at this, because I think there likely are things that we can be more specific to patients about. There are studies looking at physical fitness and exercise regimens not necessarily specific to CLL, although there are studies being done in that space, but to other cancers showing that physical activity and exercise can help even for patients not on treatment maintain control of their cancer. So general daily activity and exercise are important in studies that look at how do you tailor that to an individual I think are important too?

Lisa Hatfield:

All right. So probably time for this last question from a patient. “As a CLL expert, how do you help empower your patients so they can get the most out of their CLL treatment and survivorship? How do you work with them as a team to make sure, I guess they’re having the best outcome they can?”

Dr. Danielle Brander:

Absolutely. So it starts at the start. I guess so for conversations, meaning for those that don’t need treatment right away building the relationship, understanding how I can help patients and their caregivers help, for example, they like to learn how much they want to know, what resources can I connect them with. And then I think it’s important for them to have other team members that they can go to and talk to and hear it from, because sometimes the same information we can just share in different ways or approach differently. The nurse on our team or our pharmacist or I work with a wonderful group of nurse practitioners and physician assistants as well. And so from the beginning, I want patients to feel free to ask the questions that come to mind.

It’s amazing, of course, during the course of the visit when you’re going over your labs and that, that sometimes it’s easy to forget the questions you came in with. So, of course, anytime you can write them down before coming in, write them down and then maybe prioritize because all of us…I think it’s hard to remember everything. So prioritizing the questions we want to make sure we get to and go over as well as know that these same questions are going to mean different things to you the longer you’re living with your CLL. And so it’s okay to ask the same questions. Again, there’s never a question that any of us mind going over several times. And then just know how the team can help you. You know, are you coming? How much information do you want?

How much input do you want us to put? And what is your importance and priority? At the end of the day, I want all patients to know no one knows what it is, like living with it. No one knows what’s most important as much as you and your family or your caregiver team does. And I learn just as much from patients and the way they share their experiences. There’s a lot we can look at a group of patients with CLL and say how different each patient’s experiences, who needs treatment or not, who has side effects or not. But no one’s going to know as much as as you do living with it. And it’s our hope to help you wherever you are in your journey or whatever ways that we can help you.

Lisa Hatfield:  

Well, and I appreciate your comment that we can ask the same questions over and over if we need to. I know my oncologist when I first met with him, I felt guilty taking in more than two questions, but right before he moved, I took in a long, I rolled up a piece of paper, a long scroll, and I said, I have some questions for you, but I knew they were all repeat questions. But it does give us a little bit of peace of mind just hearing it again from somebody, especially in those initial phases of treatment, just hearing it, even if you have to hear it again and again. So thank you for mentioning that. It makes us feel a little more confident in taking those concerns to our providers, even if they’re repeated concerns. 

Lisa Hatfield:

Dr. Brander, thank you so much for being part of this Patient Empowerment Network START HERE Program. It’s these conversations that help patients truly empower themselves along their treatment journey. And on behalf of patients like myself and those watching, thank you very much for joining us.

Dr. Danielle Brander:  

Thank you for having me.

Lisa Hatfield:  

I’m Lisa Hatfield, thank you for joining this Patient Empowerment Network program. 

Can Lifestyle or Supplements Impact CLL Treatment Response?

Can Lifestyle or Supplements Impact CLL Treatment Response? from Patient Empowerment Network on Vimeo.

Can chronic lymphocytic leukemia (CLL) patients use supplements or lifestyle changes to impact treatment response? Expert Dr. Danielle Brander shares her perspective and information from other cancer studies.

Dr. Danielle Brander is an Assistant Professor in the Division of Hematologic Malignancies & Cellular Therapy at Duke University Medical Center. Learn more about Dr. Danielle Brander.

Download Resource Guide   |  Descargar Guía en Español

See More from START HERE CLL

Related Programs:

BTK Inhibitor Treatment Side Effects: What CLL Patients Should Know

Can CLL Patients Take a Break From BTK Inhibitors?

Empowering CLL Patients for Treatment and Survivorship

Empowering CLL Patients for Treatment and Survivorship


Transcript:

Lisa Hatfield:

So we have another patient who is concerned about chances of relapse and is asking if there are any lifestyle changes through diet and supplements or anything that you can speak to that may enhance their response or their duration response to the treatment?

Dr. Danielle Brander:

Yeah. So a very very great question to bring about. And this is the one area, understandably where many of us feel frustrated because we can’t tell patients specifically that this trial has been done and says this specific diet is helpful or this specific lifestyle change is helpful to make the treatment work for longer. I think some of that is because some of the general advice we give meaning maintaining daily activity or a well-balanced diet sound non-specific or simple, but I think do help in patients staying in an overall general health wellness so that they can benefit from the treatment and potentially have less side effects from the therapy. 

But getting back to the question we just talked about, I think certainly trials or studies really need to be continuing to look at this, because I think there likely are things that we can be more specific to patients about. There are studies looking at physical fitness and exercise regimens not necessarily specific to CLL, although there are studies being done in that space, but to other cancers showing that physical activity and exercise can help even for patients not on treatment maintain control of their cancer. So general daily activity and exercise are important in studies that look at how do you tailor that to an individual I think are important too.


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Can CLL Patients Take a Break From BTK Inhibitors?

Can CLL Patients Take a Break From BTK Inhibitors? from Patient Empowerment Network on Vimeo.

Is it possible for chronic lymphocytic leukemia (CLL) patients on BTK inhibitors to take a treatment break? Expert Dr. Danielle Brander shares insight.

Dr. Danielle Brander is an Assistant Professor in the Division of Hematologic Malignancies & Cellular Therapy at Duke University Medical Center. Learn more about Dr. Danielle Brander.

Download Resource Guide   |  Descargar Guía en Español

See More from START HERE CLL

Related Programs:

BTK Inhibitor Treatment Side Effects: What CLL Patients Should Know

Can Lifestyle or Supplements Impact CLL Treatment Response?

Can Lifestyle or Supplements Impact CLL Treatment Response?

Empowering CLL Patients for Treatment and Survivorship

Empowering CLL Patients for Treatment and Survivorship


Transcript:

Lisa Hatfield:

So this patient is telling us that he’s trying to plan life while living with cancer. It’s a challenge. It’s hard to know where to start. Can some patients go off of ibrutinib (Imbruvica) after five years and enter a watch-and-wait kind of program? And will they be monitored during that time too, if they ever do go off of the medication?

Dr. Danielle Brander: 

Yeah, more excellent, excellent questions. So of those main categories of treatment, the BTK inhibitors are given continuously, meaning, at least so far, the standard way we recommend of those treatments is that they’re taken every day, either once or twice a day, depending on which BTK inhibitor, and they’re taken every day. Unless patients run into progression, meaning the CLL learns to grow through its resistance or patients run into side effects that despite maybe team’s recommendation of changing the dose or holding the medications, that it’s just the medication is just not tolerated.

In those cases, there are cases where we do recommend stopping the treatment because of side effects. And the key there is that patients if depending how long they’ve been on treatment or how their CLL is responding, might not need to go on to the next treatment right away.

So to answer this patient’s question, if they were to run into a side effect that wasn’t manageable, there are patients where we say, stop treatment and let’s just watch things, see if you need treatment, if your CLL has no other reason to jump into the next therapy. And there have been encouraging things that we’re learning and that I think are hopeful to this patient’s question, which is maybe in the future there are patients where we proactively can tell them to stop after a certain time because of what we’ve learned for patients so far.

But at the current moment in time, we don’t tell patients to stop at a certain amount of time. But there are trials that are looking at that after a certain number of years. And there are also trials that have followed patients who have stopped therapy and some of those patients, as I mentioned, who are told to stop treatment due to other side effects or other reasons, may go a long time, a couple of years before they need to start therapy.


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