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.

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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!