Tag Archive for: CLL treatment

Collaborate | What You Should Know About CLL Clinical Trials

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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 resources—like 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.  

Recognizing Implicit Bias and Respecting Patients’ Choices Infographic

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Collaborate | What You Should Know About CLL Clinical Trials Resource Guide

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Lo que Debes Saber Sobre los Ensayos Clínicos de CLL Guía

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Comprender los tipos de tratamiento de la CLL Guía

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Empowering Providers to Enhance CLL Patient Care

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Empowering patients is at the core of efforts at Patient Empowerment Network (PEN), and work toward reducing health disparities is part of conversations among healthcare professionals. With this in mind, PEN has taken on a new initiative for chronic lymphocytic leukemia (CLL), the Empowering  CLL Providers to Empower Patients (EPEP) initiative. The program multiplies PEN’s reach to healthcare professionals with the aim to improve physician-patient communication; shared decision-making; and the role that CLL patients, survivors, care partners, and healthcare professionals each play in the shared decision-making process.

The EPEP CLL initiative includes the following resources:

  • Needs Assessment outlines key factors that enable patient empowerment, attributes of an empowered patient, and advice for healthcare professionals to perform a needs assessment for each patient.
  • EPEP Roundtables with CLL experts Dr. Jennifer Brown, Dr. Callie Coombs, Dr. Daniel Ermann, and Dr. Andres Chang as they discuss a range of topics including how to help your CLL patients play an active role in managing their care, healthcare provider recommended strategies for managing disease burden, the importance of advanced practice clinicians on the CLL health care team, and ins and outs of clinical trials and communication about clinical trials.
  • EPEP Resources includes the resource guide, infographics, blog, and other resources to improve patient care.
  • EPEP Peer Insights with PEN’s Vice President of Programs Aïcha Diallo breaks down the differences between cultural competence versus cultural humility and barriers that HCPs  may encounter and ways to overcome cultural humility barriers.
  • EPEP Portal utilizes PEN’s robust resource library and that of numerous trusted advocacy partners to create a vetted list of patient education resources. PEN delivers a curated PDF according to your interests and delivers it efficiently to your inbox.

Key Takeaways for CLL Patient Care

PEN had the opportunity to interview CLL experts Dr. Jennifer Brown from Dana-Farber Cancer Institute, Dr. Callie Coombs from the University of California, Irvine, Dr. Daniel Ermann from Huntsman Cancer Institute, and Dr. Andres Chang from Emory University School of Medicine to learn about some of their expertise. They shared their views about essential ways that they work with patients to help empower them and to educate them about CLL mutations and side effect management.

A team-based approach is the ideal model for taking optimal care of CLL patients. Dr. Callie Coombs stressed the key roles that pharmacists, oncology nurses, and nurse practitioners play in CLL patient care. “…I think it comes down to your internal resources, but I would say taking care of CLL patients is clearly a team effort. And so it’s not just me, but also a team of additional practitioners that I work with. So I’d like to emphasize how important pharmacists are because I’ve definitely seen some side effects that come about because a patient is now on a medication that interacts with whatever their CLL therapy is, which drives up the levels of the drug and then brings out certain toxicities so they can help us identify these if perhaps I missed it or didn’t ask the patient about a supplement, et cetera.”

The advances in CLL treatment have expanded tremendously over the past several years leading to refined treatments. Expert Dr. Callie Coombs shared her perspective about how patient care has changed. “…CLL is a chronic disease that affects our primarily elderly patients, and so it’s a marathon, not a sprint. However, with all of the advances that we’ve had in excellent drug therapies, despite these resistance mutations, patients can attain many, many, many years of high quality of life. But it’s incumbent upon us as their providers to help ensure that quality of life through effective management of side effects that may be encountered over the course of their time on therapy for the patients that do need therapy.”

Switching treatments can be an effective method for resolving side effects in some patients. Dr. Callie Coombs discussed some changes she’s seen in some of her patients. “…I’ve had patients with chronic long-standing toxicities to ibrutinib (Imbruvica) that perhaps went underrecognized where I say, ‘Hey, I’ve notice your blood pressure has gone up a lot…Let’s switch you over to acalabrutinib,” or other patients, “Oh, you’ve had issues with atrial fibrillation…let’s try switching you to zanubrutinib.’..Because the rates are a lot lower and a lot of patients can have improvement or just complete resolution of the prior side effect. And so I hope that that emphasizes this is something that we think about every day, and switching is appropriate in the setting of intolerance.”

CLL Mutations and Side Effect Management

Although CLL is not defined by any specific mutation, CLL care providers see a large number of different mutations at low percentages. Dr. Jennifer Brown discussed how mutations can come into play with CLL treatment. “So at baseline, the most common mutations, which are somewhere in the 10 to 20 percent range of patients, although less than that if you have very early stage patients, affect the p53 gene, NOTCH1, SF3B1, and ATM. P53 is the most important because that one does influence our thinking about the patients and our choice of therapy in some cases.”

TP53 aberrations are especially vital in relation to chemotherapy. Dr. Callie Coombs explained the impact of these specific mutations. “…when patients have TP53 aberrations, whether that’s 17P or a  TP53 mutation or both, given that they can occur in isolation or together, these patients should never get chemotherapy, because they have extremely terrible responses to chemo, and that should not be part of the therapies offered to these patients.”

Warning CLL patients ahead of time about common treatment side effects is recommended to help prepare them for treatment. Dr. Jennifer Brown explained some common side effects with her patients. “…headaches often happen early on when you initiate acalabrutinib (Calquence) but they go away typically very quickly. And so if patients know that, then they’re much less worried, and then you can talk to them about the strategies, because caffeine or acetaminophen (Tylenol) will often help with that. If you warn them that they may have some joint aches or pains, that can also help, since those are often transient…With venetoclax, warning them about some nausea or diarrhea, and then we often manage that by subsequently moving the drug to the evening after they’re done with their ramp up, or initiating an antiemetic, things like this.”

Dose adjustments to CLL treatment may prove to be a highly effective method of side effect management for some patients. Dr. Daniel Ermann shared his perspective about dose adjustments. “…I think dose reduction can make a big difference in the side effect profiles of these medications. I’ve seen reduced bleeding, for example, reduced rates of atrial fibrillation. With BCL-2 inhibitors, I’ve seen reduced rates of neutropenia, for example. And I’ll just say from my experience, I haven’t seen too much compromise in efficacy. So I think I would recommend for providers when you’re thinking about dose reduction, it’s really a balance of toxicity and efficacy. And I think with just how good our treatments are for CLL these days, I try to reduce toxicity. And I think in that way, it does maximize their efficacy.”

 Dr. Andres Chang also shared his perspective on dose escalation and dose reduction in CLL patient care. “…whether to dose-escalate or dose-reduce really depends on the treatment we’re talking about. For new therapies like BCL-2 inhibitors such as venetoclax (Venclexta), we do dose escalation at the beginning of therapy to mitigate potential side effects such as tumor lysis syndrome, whereas in most of the other scenarios we will try to do dose reductions in order to mitigate adverse events.”

Even though CLL treatments have shown increases in the number and complexity of treatment options, vital HCP best practices can help further expansion in empowering CLL patients. How do we improve care of patients? And how do we work with dose adjustments and side effect management in patient care? We hope healthcare providers can take advantage of these timely resources of the EPEP initiative to work toward optimal and equitable treatment for all CLL patients.

Collaborate | Which Treatment is Right for YOUR CLL?

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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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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 | Which Treatment is Right for YOUR CLL? Resource Guide

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Collaborate | How Is CLL Treated?

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

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

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Transcript:  

Dr. Johnson: 

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

Joseph: 

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

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

Dr. Johnson, can you please explain this approach? 

Dr. Johnson: 

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

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

Joseph: 

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

Dr. Johnson: 

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

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

Joseph: 

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

Dr. Johnson: 

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

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

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

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

Joseph: 

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

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

Dr. Johnson: 

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

Joseph: 

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

Collaborate | Collaborate | How Is CLL Treated? Resource Guide

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EPEP CLL Resource Guide en Español II

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