Chronic Lymphocytic Leukemia Archives

Chronic lymphocytic leukemia (CLL) is a typically slow-growing cancer which begins in lymphocytes in the bone marrow and extends into the blood. It can also spread to lymph nodes and organs such as the liver and spleen.

CLL develops when too many abnormal lymphocytes grow, crowding out normal blood cells and making it difficult for the body to fight infection.

More resources for Chronic Lymphocytic Leukemia (CLL)  from Patient Empowerment Network.

What Is a Clinical Trial and What Are the Phases?

What Is a Clinical Trial and What Are the Phases?  from Patient Empowerment Network on Vimeo.

How do clinical trials work? Dr. Seth Pollack, a clinical researcher, defines clinical trials and explains what occurs in each of the phases.

Dr. Seth Pollack is Medical Director of the Sarcoma Program at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University and is the Steven T. Rosen, MD, Professor of Cancer Biology and associate professor of Medicine in the Division of Hematology and Oncology at the Feinberg School of Medicine. Learn more about Dr. Pollack, here.

See More from Clinical Trials 101

Related Resources:

A Patient Shares Her Clinical Trial Experience

Is It Expensive to Participate in a Clinical Trial?

Are Clinical Trials a Logistical Nightmare?


Transcript:

Katherine Banwell:    

Let’s start with a basic question, Dr. Pollack. What is a clinical trial?

Dr. Seth Pollack:       

Yeah. It’s a basic question, but actually, sometimes, it can be harder to answer than you might think.

I think everybody has an idea in their mind about what a clinical trial is, you’re going to test a new approach. But actually, there’s a whole variety of different things that can be a clinical trial, right? A clinical trial a lot of the times is testing a new drug, could be testing something for the very first time, could be testing something in combination with other drugs for the very first time. It could be testing a standard approach but doing it in a new way. It could even be giving less treatments than we usually do. For example, if there’s a very intense, harsh, standard of care treatment we might even have a clinical trial where we try a little bit less and see that patients do just as well. So, all of those things are clinical trials, but really the clinical trial in its heart is a very organized and careful approach to testing a new treatment strategy for patients.

Katherine Banwell:    

Okay. What are the phases of a clinical trial?

Dr. Seth Pollack:       

Yup. So, the Phase I clinical trial is usually when we’re testing something for the first time in however we’re doing it. So, it could be the first time we’re testing a new drug, or the first time we’re testing a drug in combination with other drugs. And the real thing about a Phase I trial is that the main goal of the trial is to look at the safety and tolerability of the regiment. That doesn’t mean that we’re not really trying to figure out if the regiment works, I mean, that’s also one of the most important things. But the most important thing for a Phase I trial is making sure that it’s safe and tolerable. A Phase II trial is where we, sort of, shift and we’re still making sure, and double checking, that the drug is, but now our main focus becomes on the efficacy of the strategy.

So, now we’re trying to really figure out if this is a strategy that seems affective enough to go to a Phase III. And a Phase III is a big multi-center trial. Frequently those will be placebo controlled where a lot of the times there’ll be randomized trial where we really try to absolutely prove, beyond a shadow of a doubt, that, that strategy is affective. And those are most of the types of trials that patients will encounter.

Katherine Banwell:    

Okay. Thank you for providing clarity around the phases.

Five Ways the PEN Empowerment Lead Program Can Support Your Cancer Journey

Our Empowerment Lead program is here to support patients and families around important topics and to provide navigation for the path to empowerment. Our Empowerment Leads are highly passionate empowerment ambassadors volunteering from around the U.S., engaging with the PEN network of cancer patients and care partners, and serving as a direct channel of empowerment.  

1. Utilize the PEN Text-Line

By texting EMPOWER to +1-833-213-6657, you can meet someone with your same condition  and  receive personalized support from our Empowerment Leads. Whether you’re a cancer patient, or a  friend or loved one of a cancer patient, PEN’s Empowerment Leads will be here for you at every step of your journey.

2. Watch PEN Videos

Taking a proactive role in your well-being as a patient is of utmost importance for optimal health outcomes. And PEN videos are a trusted source when seeking out information from cancer experts, patients, care partners, and PEN Empowerment Leads. Whether you’re a newly diagnosed patient, care partner, long-time cancer patient, or other concerned patient advocate, PEN videos provide a valuable way to learn about cancer patient stories, testing information, questions to ask your cancer specialist, how to support and be supported as a care partner, ensuring that your patient voice is heard, and more.

3. Read PEN Blogs

Our PEN blogs are a rich source of support information on a wide range of topics for cancer patients and care partners. The blogs serve as another way to gain knowledge and advice for navigating and coping with your cancer journey. Some recent topics have included mental  health advice, financial support resources, nutrition and exercise tips, COVID-19 vaccine guidelines, patient stories, caregiver advice, genetic testing, and cancer news updates.

4. Download and Use Our Activity Guides

Initiated as a patient and care partner tool at the beginning of the COVID-19 pandemic, our PEN-Powered Activity Guides continue as a way to stay connected and to relieve stress during your cancer journey. Packed with information and support resources, the Activity Guides provide content including clinical trial information and experiences, patient stories and lessons learned, advice from care partners, healthy recipes, music playlists, coloring pages, and more. If you’re a busy cancer patient or care partner, the Activity Guides are easy to print to take with  you to read during travel and waiting room time for cancer care appointments.

5. Learn About Our PEN Empowerment Leads

If you don’t have time to watch a video or to read a blog right away, you can browse our list of PEN Empowerment Leads. You can easily see the community that each Empowerment Lead serves  and read a short bio about their experience as a cancer patient or care partner.

By taking advantage of our PEN Empowerment Lead resources, cancer patients and care partners can gain knowledge and confidence to navigate their own cancer journeys.

What Is Watch and Wait in CLL?

What is Watch and Wait in CLL? from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia (CLL) patients often experience watch and wait, but what is it? Watch to learn about watch and wait and what CLL patients can expect during this period.

See More from START HERE CLL

Related Programs:

What is the Prognosis of CLL?

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CLL Patient-Expert Q&A

How to Approach Side Effects With CLL Medications

How to Approach Side Effects with CLL Medications


Transcript:

Chronic lymphocytic leukemia (CLL) patients will often have a period of monitoring called watch and wait. Watch and wait is also known as watchful waiting or active surveillance. During watch and wait, CLL care providers check blood counts and perform medical examinations on a regular basis to gauge whether any disease progression of concern occurs.

One of the reasons that CLL is sometimes referred to as a “good cancer” is due to the fact that many CLL patients remain in watch and wait for a period of years rather than months. Though some CLL patients refer to watch and wait as “watch and worry,” CLL research has proven active surveillance as optimal for some CLL disease states. This strategy of watch and wait is the standard of care when a patient experiences no symptoms and only has small changes in blood counts.

Brian Hill, MD, PhD:

“We’re taught in much of medicine and in much of cancer that early diagnosis and early treatment is very important. And it is very important for many conditions – breast cancer or we’re taught let’s get our mammograms.

And have an early detection and immediate treatment to cure breast cancer. Similarly, colon cancer – get your colonoscopy, get your diagnosis sooner rather than later. And have surgery so you can have a higher likelihood of a cure. In the case of chronic lymphocytic leukemia, it’s never been shown despite multiple attempts over many decades, that treating someone with CLL is – earlier, is going to impact the outcomes and the big picture. But we do know that treating CLL earlier can lead to more side effects earlier.

So, in other words, if you feel fine and your blood counts are just a little abnormal, and there’s not compelling indication to treat, we can safely observe patients until an indication for treatment exists.”

CLL care providers will monitor blood counts and symptoms carefully to determine when a patient should move from watch and wait to active treatment.

What Is the Prognosis of CLL?

What is the Prognosis of CLL? from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia (CLL) can progress in two different ways. Watch to learn about the prognosis, monitoring, and treatment for each CLL type.

See More from START HERE CLL

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What is Watch and Wait in CLL?

What is Watch and Wait in CLL?

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CLL Patient-Expert Q&A

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How to Approach Side Effects with CLL Medications


Transcript:

Chronic lymphocytic leukemia (CLL) patients generally have a better outlook compared to other cancer types – with a higher 5-year survival rate of about 83 percent. There are two types of CLL – one being a slower-growing type and the other a faster-growing type. 

The slower-growing type features higher lymphocytes with slightly low platelets, neutrophils, and red cells. While the faster-growing type produces too many CLL cells in the blood that prevent proper function of red cells and platelets. With the two different types of CLL, patients may have very different patient journeys depending on their disease 

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. 

Dr. Kerry Rogers:                 

“So, for many people, CLL is a very manageable disease. Like I said, some people have had CLL longer than I’ve been a doctor and have needed no treatment for it. However, there are people with CLL that go on to have a lot of difficulty from it, including not doing well with more than therapy or needing really new, advanced therapies, like something called CAR T-cell therapy.

So, for any individual person, you can never say how it’s going to turn out for them, but we do use our experience taking care of lots of people with CLL to make an educated guess as to if this person’s going to be someone that’s going to expect to need a lot of treatment in their lifetime, or maybe no treatment in their lifetime.”

CLL research continues to advance, and clinical trials bring more refined treatments for patients to improve both CLL symptoms and treatment side effects over time. Ask your CLL specialist if you have questions about research advances and check reliable sources like the Patient Empowerment Network, The Leukemia & Lymphoma Society (LLS), and the American Society of Hematology (ASH) and American Society of Clinical Oncology (ASCO) annual conferences.

How Is Flow Cytometry Used in CLL?

How is Flow Cytometry Used in CLL? from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia uses flow cytometry as part of testing methods, but how is it used? Watch to learn about the information provided by flow cytometry tests and how the information is used for CLL patients.

See More from START HERE CLL

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What is CD5 Expression in CLL?

What is Chronic Lymphocytic Leukemia (CLL)?


Transcript:

Chronic lymphocytic leukemia (CLL) can be either a slower-growing or faster-growing type depending on the patient. There are several tests that CLL specialists use in diagnosing the condition – with flow cytometry being one of the testing tools.

Flow cytometry provides information about particle or cell characteristics including:

  • DNA gene expression
  • Total DNA
  • Cell structure
  • Cell size
  • Newly-created DNA
  • Amount and type of specific surface receptors
  • Intracellular proteins
  • Transient signaling

Dr. Lyndsey Roeker:                

“So, at diagnosis flow cytometry is the first test done, and what that means is, you take all of your white blood cells in your blood, and you run them through a fancy machine that puts them into buckets. So, you have a bucket of your normal neutrophils, a bucket of your normal lymphocytes, and then you find this bucket of cells that look somewhat unusual. And those have a specific look, if you will, and if they look like CLL cells, that’s how we make the diagnosis.”

The properties found in flow cytometry help to determine the type of CLL that a patient has. CLL specialists then use flow cytometry results along with other blood tests, a patient’s medical history, and other signs and symptoms to establish CLL prognosis and treatment options. Flow cytometry is a key test that confirms CLL diagnosis by checking a patient’s bone marrow or blood cells for signs of CLL, and test results are used to help determine optimal care for each patient.

What Is Chronic Lymphocytic Leukemia (CLL)?

What is Chronic Lymphocytic Leukemia (CLL)? from Patient Empowerment Network on Vimeo.

CLL stands for chronic lymphocytic leukemia, but what is it exactly? Watch to learn how CLL develops and hear from CLL expert Dr. Jennifer Woyach and patient Adrian.

See More from START HERE CLL

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How is CLL Staged?

How is CLL Staged?

What is CD5 Expression in CLL?

What is CD5 Expression in CLL?

How is Flow Cytometry Used in CLL?


Transcript:

CLL is a blood cancer called chronic lymphocytic leukemia, which originates in the bone marrow of patients. Genetic mutations in the blood become leukemic, multiply into CLL cells, and bring on the condition of CLL. CLL is counted as the most common adult leukemia type among countries in the Western world. For the most part, CLL impacts older adults at an average diagnosis of age 70 with slightly more men impacted compared to women with CLL.

Dr. Jennifer Woyach:

“CLL is an interesting disease because it’s one of the only cancers that does not require a biopsy of something for a diagnosis. So, we can, actually, make the diagnosis of CLL based on the peripheral blood.”

Adrian (CLL Survivor): “It happened as a bit of a shock to me, actually. I’ve been quite healthy quite well earlier that week. I’d gone walking in the mountains in Switzerland, but I collapsed one day on the way home from work, and was diagnosed with pneumonia. And during that illness, they realized that my immune system wasn’t working too well, and then my lymphocyte count was high, and I was diagnosed with CLL. I was put on watch and wait, which for some people can last a decade or more, but for me, it only lasted 15 months.”

Sometimes referred to as a “good” cancer among cancer types, many CLL patients stay in an active surveillance period of “watch and wait” for several years.

What Is CD5 Expression in CLL?

What is CD5 expression in CLL? from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia (CLL) patients display a different CD5 expression than some other blood cancers. Watch to learn about CD5 expression and how monitoring plays into CLL patient care.

See More from START HERE CLL

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How is CLL Staged?

How is CLL Staged?

What is Chronic Lymphocytic Leukemia (CLL)?

How is Flow Cytometry Used in CLL?


Transcript:

The protein of CD5 is abnormally expressed (or displayed) in T cells and/or in B-1a B cells in chronic lymphocytic leukemia (CLL) and is often referred to as a marker. The small CD5-positive B lymphocytes multiply and accumulate in a CLL patient’s blood, bone marrow, and secondary lymphoid tissues and then create the condition of CLL. Though some blood cancers show as CD5-negative status, CD5 is shown as overexpressed along with CD19 and CD23 combined with weak expression of CD20 and CD79b in CLL patients.

Recent research studies looking at different CD markers including CD5 show that monitoring of CD expression changes over time can help more accurately determine prognosis for CLL patients. 

Dr. Jennifer Woyach:

“So, there is kind of a code of these markers on the surface of all of your blood cells that can tell what type of cells they are. So, for CLL in particular, we’ll see that the cells express some of the normal markers we would see on a normal B lymphocyte.

Things like CD19, CD20, CD23. But they also express a marker called CD5, which is found on normal T lymphocytes but shouldn’t be found on B lymphocytes.

And so, this collection of surface markers can make the diagnosis of CLL. Sometimes, we do need to do extra studies like a bone marrow biopsy or a lymph node biopsy. But oftentimes, those are not necessary at the time of diagnosis.”

As always, check with your CLL specialist if you have more questions about CD5 expression in CLL.

How Is CLL Staged?

How is CLL staged? from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia has various methods of staging, but what are they? Watch to learn the different methods that are used for CLL staging and how CLL risk is determined.

See More from START HERE CLL

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What is CD5 Expression in CLL?

What is CD5 Expression in CLL?

What is Chronic Lymphocytic Leukemia (CLL)?

How is Flow Cytometry Used in CLL?


Transcript:

Chronic lymphocytic leukemia (CLL) specialists have used three different staging systems to assist them in forecasting disease progression and creating suitable treatment plans for patients. Depending on where or when a CLL patient has been diagnosed and monitored, their specialist(s) may have used the Rai staging system, Binet staging system, and/or CLL International Prognostic Index (CLL-IPI).

Dr. Kerry Rogers:

“So, unlike most cancers, where CLL is staged with CT scans or PET scans, the staging for CLL is actually remarkably simple, and I really like this because it limits the amount of testing you have to do for people, especially the people that might be just monitored for their CLL or observed. You don’t wanna put them through a lot of intensive testing they don’t need. So, the only two things you need to properly stage CLL are a complete blood count and a good physical exam.”

The Rai staging system uses the three stages of low risk, intermediate risk, and high risk to categorize patients. While the Binet staging system uses the three stages of A stage, B stage, and C stage.

 In 2016, the CLL-IPI staging system was initiated worldwide to provide a unified staging system for CLL patients. 

In CLL-IPI staging, the following prognostic factors were identified, including:

  • TP53 deleted or mutated – assigned 4 points
  • Unmutated IGHV – assigned 2 points
  • Serum beta-2 microglobulin concentration greater than 3.5 mg/L – assigned 2 points
  • Rai Stage I – V or Binet Stage B – C – assigned 1 point
  • Patient age over 65 years – assigned 1 point

The point totals from the five factors in CLL-IPI staging correspond to the following recommendations:

  • Low risk – 0 to 1 point; no need to treat
  • Intermediate risk – 2 to 3 points; no need to treat unless the patient is highly symptomatic
  • High risk – 4 to 6 points; treatment unless the patient experiences no symptoms
  • Very high risk – 7 to 10 points; If the decision is made to treat, use novel agents or treatment in a clinical trial instead of chemotherapy

Will CLL Watch and Wait Be Redefined for Patients?

Will CLL Watch and Wait Be Redefined for Patients? from Patient Empowerment Network on Vimeo.

Watch as CLL specialist, Dr. Nadia Khan from Fox Chase Cancer Center explains the current watch and wait strategy for CLL patients and ongoing studies exploring earlier interventions for patients with high risk disease features.

See More from START HERE CLL

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Can Supplements Be Taken During CLL Treatment?

Can Supplements Be Taken During CLL Treatment?

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What is Watch and Wait in CLL?


Transcript:

Mary Leer:

Karen asks, with many new therapies available, will watch and wait be redefined for CLL patients? 

Dr. Nadia Khan:

What an excellent question, Karen. Currently, the strategy for CLL patients is to institute therapy when there is likely to be a benefit with the intervention, and there are studies that are ongoing looking at earlier intervention with oral therapy, and once we see the readout for patients with particularly high-risk features. I think it is possible that we’ll have an alternative strategy for those patients. 

Thankfully, our CLL patients live very long lives, and what we’ve come to see over decades of treatment experience with our CLL patients is that early intervention to date has not resulted in longer…longer survival. So at this point, it’s not something that’s recommended, but we may have more information soon. 

What Tests Reveal If CLL Treatment Is Working?

What Tests Reveal If CLL Treatment Is Working? from Patient Empowerment Network on Vimeo.

Some chronic lymphocytic leukemia (CLL) patients may wonder how they can check to see if treatment is working. Watch as Dr. Nadia Khan from Fox Chase Cancer Center answers a viewer’s question and provides insights on what tests are used in assessing response to CLL treatment.

See More from START HERE CLL

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Can Supplements Be Taken During CLL Treatment?

Can Supplements Be Taken During CLL Treatment?

How is Flow Cytometry Used in CLL?

Will CLL Watch and Wait Be Redefined for Patients?

Will CLL Watch and Wait Be Redefined for Patients?


Transcript:

Mary Leer: 

Dr. Khan, here’s a question that I think many are probably thinking of right now, what tests do you give patients to see if CLL treatment is working?

Dr. Nadia Khan: 

Thank you, Jessica. During the course of CLL treatment and at the end of a time-limited treatment course, we’re assessing for responses, so as a patient is going through their treatment, we may decide to re-image to determine if there has been debulking of lymph nodes. And depending on the treatment that we’re administering and where the lymph nodes are located, we may decide to do imaging sooner or later, so for example, if there are palpable lymph nodes while a patient is on therapy, and we can measure these readily by physical exam in the clinic, we may not feel as compelled to re-image at an early time point, if there is valiantly or in large seen that is hard to palpate. And we want to understand if treatment is working after approximately three to four cycles of therapy, we would assess for a good response to treatment if clinically, it also does appear that patients are responding, and if there was any question as to respond, we would image at an earlier time point when patients are being treated with a venetoclax-based (Venclexta) regimen and there is significant adenopathy or an enlarged spleen, we may reassess the size of lymph nodes and spleen during the course of venetoclax ramp-up to determine if patients can be transitioned from inpatient to outpatient ramp-up. 

Can Supplements Be Taken During CLL Treatment?

Can Supplements Be Taken During CLL Treatment? from Patient Empowerment Network on Vimeo.

Some chronic lymphocytic leukemia (CLL) patients may wonder about interactions with their usual supplements. Watch as Dr. Nadia Khan from Fox Chase Cancer Center shares advice about supplements and other things CLL patients may be taking for health concerns.

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What Is CAR T-Cell Therapy in CLL?

What Tests Reveal If CLL Treatment Is Working?

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Will CLL Watch and Wait Be Redefined for Patients?


Transcript:

Mary Leer: 

Okay, here’s a question that Sandra asks, “I’m preparing for CLL treatment, can I take my vitamins, herbs, or other supplements during treatment?”

Dr. Nadia Khan: 

Thanks for that excellent question, Sandra. It’s so important to review all of your medications with your provider before starting any therapy during the course of your CLL treatment. Drug interactions with herbals and over-the-counter medications can result in serious side effects, some over-the-counters and herbals can inhibit the effectiveness of CLL therapy. So it’s important to discuss these with your provider on a case-by-case basis.

What Is CAR T-Cell Therapy in CLL?

What Is CAR T-Cell Therapy in CLL? from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia (CLL) patients have the option of CAR T-cell therapy in some cases. Watch as Dr. Nadia Khan from Fox Chase Cancer Center explains CAR T-cell therapy, access to the treatment, and which CLL patients are eligible.

See More from START HERE CLL

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Are There Any Long-Term Side Effect Risks for CLL Patients?

What Tests Should I Get Before Seeing a CLL Specialist?

Can Supplements Be Taken During CLL Treatment?

Can Supplements Be Taken During CLL Treatment?


Transcript:

Mary Leer: 

Yolanda’s question is, what is CAR T-therapy and who is eligible? 

Dr. Nadia Khan: 

Thank you, Yolanda. This is a question that I get asked very frequently. CAR-T therapy is an exciting cellular therapy that has been FDA-approved in a number of lymphomas, and it is currently not FDA-approved for patients with CLL. So at this time, CLL patients can receive CAR-T therapy in the setting of a clinical trial only, and it is typically reserved for those patients who have progressed or relapsed after multiple lines of therapy and for whom there is no alternative therapy for consideration. Often, it is considered in the context of the clinical trial prior to the use of allogeneic stem cell transplant, because the results of allo transplant and CAR-T seemed to be fairly comparable. CAR-T therapy, however, is much better tolerated than allo transplant, both of these modalities are very rarely employed for our CLL patient today because of the very effective targeted therapies and immunotherapies that we have to use. 

Mary Leer: 

Dr. Khan, Chuck’s question is, what are the side effects of CAR T-cell therapy? 

Dr. Nadia Khan: 

Thank you, Chuck. For your excellent question, CAR-T-therapy is associated with two main types of side effects, one is Cytokine Release syndrome or CRS, which happens within the first two weeks of receiving CAR cells, and that can manifest as fevers, chills, a drop in blood pressure, shortness of breath, and the requirement of oxygen. When that happens to patients, there are medications that are given to help improve those cytokine-mediated events. Another major side effect with CAR-T therapy is neurotoxicity, which also happens within the first 14 days in some patients who receive CAR therapy, and that can manifest as anything from a headache to more concerning confusion, seizures and a coma. CRS happens commonly in patients who receive party therapy and is usually managed very successfully with anti-inflammatory therapies given intravenously in the hospital and can be used for patients even who get outpatient CAR-T therapy.

Dr. Nadia Khan: 

When patients do suffer with neuro toxicities, intravenous therapies are also employed to combat that, and when necessary, patients might require escalation to an intensive care setting when these toxicities are very severe. 

Mary Leer: 

Dr. Khan, is CAR T therapy a cure for CLL? 

Dr. Nadia Khan: 

Thank you for your question, Bernard. CAR-T therapy has been curative for a minority of patients who have been treated with CARs on clinical trials, and unlike other lymphomas In CLL, there hasn’t been an FDA approval as yet for CAR-T therapy, and we are hopeful for that to change in the future as CARs are modified and may potentially become more effective at eradicating the CLL and hopefully resulting in better side effect profiles and patients who do receive CAR-T therapy, the majority of patients who have received CARs in CLL studies have not had durable remission, unfortunately.

Mary Leer: 

Dr. Khan, what is conditioning therapy and why is it given prior to infusion of the CAR T cells?

Dr. Nadia Khan: 

Thank you, Samuel. Conditioning therapy is a course of a briefer course of chemotherapy that’s given just prior to CAR-T therapy, really to prepare the body in a way to receive the CARs, and it makes the CARs more effective when there has been a level of immunosuppression to allow the CARs to expand more freely after they have been re-infused into a patient. 

How Often Do CLL Patients Develop a Second Gene Mutation?

How Often Do CLL Patients Develop a Second Gene Mutation? from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia (CLL) patients can sometimes develop a second gene mutation. Watch as Dr. Nadia Khan from Fox Chase Cancer Center shares how common it is to develop a second mutation and when it’s important to retest for genetic changes.

See More from START HERE CLL

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Are There Any Long-Term Side Effect Risks for CLL Patients?

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How to Approach Side Effects With CLL Medications

How to Approach Side Effects with CLL Medications


Transcript:

Mary Leer: 

This question comes from Laurie. How common is it for CLL patients to develop a second gene mutation? 

Dr. Nadia Khan: 

Laurie, Thanks for that question. It is not common for most call patients to have significant alterations in the genetic landscape of the CLL. With that being said, there are a few notable exceptions for CLL with TP53 dysfunction or complex cytogenetics, there is a higher likelihood that there will be genetic instability in those CLL clones. Therefore, it’s important to retest for changes if there is a change in the biology of the CLL, if there is a progression on therapy, for example, or at the time when a new therapy is planned. 

Are There Any Long-Term Side Effect Risks for CLL Patients?

Are There Any Long-Term Side Effect Risks for CLL Patients? from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia (CLL) patients are at-risk for some treatment side effects. Watch as Dr. Nadia Khan from Fox Chase Cancer Center shares how side effects can vary by treatment type and some side effects for CLL patients to be aware of.

See More from START HERE CLL

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How Often Do CLL Patients Develop a Second Gene Mutation?

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Transcript:

Mary Leer: 

George asks, are there any long-term side effect risks for CLL patients? 

Dr. Nadia Khan: 

That’s a great question, George. It really would depend on the therapy being instituted and when in the chemoimmunotherapy era for CLL patients, we have a very different perspective of what short-term and long-term side effects were and are for those patients who have been treated with chemoimmunotherapy. For patients treated with targeted therapies and immunotherapy combinations today, there tends to be fewer serious long-term side effects when looking at the various drug classes. For example, BTK inhibitors, there is a risk of atrial fibrillation that remains constant throughout the course of therapy, and if a patient is on therapy for one year or 10 years, they can develop that particular side effect. High blood pressure can be significant with BTK inhibitors as well, and that risk also tends to be stable. In terms of infection risk, there is relative immunosuppression with all CLL therapeutics, and so our concern, more recently has been focused on COVID infection, serious bacterial and viral infections tend to be less frequent, we don’t institute prophylaxis for those infections because they tend to be so few and far between in the patients that we’ve treated.  

How to Approach Side Effects With CLL Medications

How to Approach Side Effects With CLL Medications from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia (CLL) patients often experience treatment side effects. Watch as Dr. Nadia Khan from Fox Chase Cancer Center explains CLL medications that typically cause side effects and how the side effects can be managed.

See More from START HERE CLL

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CLL Patient-Expert Q&A

CLL Patient-Expert Q&A


Transcript:

Mary Leer: 

We have a question from Larry about side effects. Larry says: I’ve been fighting side effects with each medicine. Will the correct answer for side effects in CLL always be to stop the medicine? 

Dr. Nadia Khan: 

Larry, thank you for your question. It is an excellent one, and this is something that we encounter on a very regular basis in CLL patients who are on targeted therapies. The side effects occur frequently in patients taking BTK inhibitors, in patients taking PIK inhibitors, and we have some side effects reported on BCLT inhibitors as well. Typically, side effects on all of these targeted therapies can be managed with either dose reduction or supportive therapies, and we don’t necessarily have to stop a medication due to a side effect that is encountered. And, of course, it would depend on the type of side effect and the severity of the side effect before deciding to pause therapy for a time or to dose reduce or add other medications to help. 

Mary Leer: 

Sarah has a question about side effects. How can I tell if side effects are from CLL, my medicine, or just a part of aging? 

Dr. Nadia Khan: 

Thanks for that question, Sarah. It can be a challenge to tease out the cause of any given complaint, whether the symptom is due to underlying other medical conditions, the medications a patient is on, their CLL therapy, their CLLl itself is something that we find to be challenging, and it can often be a process of elimination and understanding when side effects started and how they are related to the known side effect profile of a therapy is often a starting point. Depending on the side effect, we may decide to institute a treatment holiday, and if the side effect improves or resolves during the treatment holiday, it’s more clear that the side effect is due to the medication in question. If the side effect persists during that period of time, then it’s more likely to be due to something else.