Tag Archive for: CLL prognosis

Anxious From CLL Watch & Wait? How to Cope.

Anxious From CLL Watch & Wait? How to Cope. from Patient Empowerment Network on Vimeo.

Many CLL patients who are put on “watch and wait” following a diagnosis. Dr. Catherine Coombs explains this approach and provides advice on how patients can cope with the emotional impact of waiting to treat their disease. 

Dr. Catherine Coombs is an Assistant Professor of Medicine in the Division of Hematology at The UNC Lineberger Comprehensive Cancer Center. Learn more about Dr. Coombs here.

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Transcript:

Katherine:

What would you say to a patient who has a lot of anxiety about having to wait for treatment? 

Dr. Coombs:

The first thing I would say is that anxiety is normal. More often patients are anxious than not because it’s really hard to be told you have a leukemia and that we’re not going to do anything about it. I think that’s really hard to hear. The way that I try to counsel people is that my role as the doctor is to do no harm. If you have a leukemia and there’s no proven way to make you live longer by giving therapy early on, if you’re in that early stage of CLL where you’re asymptomatic, by offering therapy, all I could do is make you worse.  

I could give you a new side effect, I could add a new cost burden. Until I have data to prove that that’s going to make your life longer, which we do not have yet (maybe that will be different five to 10 years from now, but we do not have that yet), I could only hurt you. So, that’s not what I want to do. I want to have you live and thrive.  

The better thing to do, based on what we know now and what we know our therapies can and can’t do is to do the watchful waiting. But the anxiety is normal. Depending on how severe the anxiety is, I have had patients meet with – at least at UNC we have something called the Cancer Center Support Program, which is a group of psychiatrists, psychologists, therapists that can help talk over what it means to have a cancer diagnosis and not necessarily need therapy.  

Then I also provide education on the other health issues that can come up as part of being a CLL patient even on that watchful waiting program. The thing that we talk about the most is the increased risk for infections, which in the era of the COVID pandemic is a major concern. Luckily, we have a lot of ways to decrease the health risk for COVID, whether it’s due to the administration of vaccines, or monoclonal antibodies, which I think we’ll talk about more later.  

There’re a lot of ways that people can live with it. I do think the anxiety is normal. At least in my own practice, I’ve found that most of the time the anxiety lessens with time. Because it becomes a part of who you are. It doesn’t have to be all of who you are: people can live their lives largely the way they did before with a bit of extra knowledge about things that can come up in the future but may never come up at all.  

Setting CLL Treatment Goals WITH Your Team

Setting CLL Treatment Goals WITH Your Team from Patient Empowerment Network on Vimeo.

What are the goals of CLL treatment? CLL expert Dr. Catherine Coombs explains how goals can vary by patient and discusses the benefits of making decisions with your healthcare team.

Dr. Catherine Coombs is an Assistant Professor of Medicine in the Division of Hematology at The UNC Lineberger Comprehensive Cancer Center. Learn more about Dr. Coombs here.

See More from Thrive CLL

Related Resources:

Anxious From CLL Watch & Wait? How to Cope.

What Helps Determine a CLL Patient’s Treatment Options?

Expert Advice for CLL Self-Advocacy

Transcript:

Katherine:

Appropriate treatment obviously is part of thriving. Before we get into the specifics of CLL treatment approaches, how would you define treatment goals?  

Dr. Coombs:

The first thing to jump into prior to going into treatment goals is asking the question, “Is treatment even needed?” CLL, in contrast to pretty much most other cancers, is not one of the cancers that needs to be treated immediately.  

At least in 2022, there’s no proven benefit to early treatment. That is being questioned now that we have drugs that are much better tolerated. There are some nice clinical trials asking that question again, “Is early treatment beneficial?” At least what we know now is that is not the case. As it turns out, probably up to a third of patients with CLL never need treatment in their lifetime. That means that the disease progresses along usually at a slow pace, and individuals die from something else: any number of other potential causes of death.  

The other two-thirds plus do need treatment at some point in their lifetime. The goals of treatment kind of depend on the patient. There’s not a one-size-fits-all approach in my view. I think it depends on what is most important to the patient.  

I’ll give two drastic examples just to show how goals can be different. CLL often is a disease of older individuals. The average age of diagnosis is usually around 70 or so. But many patients have the disease for a few years, if not longer, prior to needing therapy. So, one example patient could be an 85-year-old individual who has had the disease for a decade and finally needs treatment. The goals of that patient may be to control disease, but he or she may not be worried about going into a deep remission, and may be very, totally willing to be on a drug. And definitely in order to control the disease, alleviate disease-related symptoms, but perhaps not get into a deep remission.  

The other patient, just to take it to another far extreme, I work in an academic medical center; I see some very young patients which is not the norm in CLL, but it does happen.  

Say it’s a 40-year-old patient. His or her goals may be very different. They may not like the idea of being on an oral therapy indefinitely or until progression. So, the goals for that patient may be different. They may say, “Gosh, I’d like to do something a bit more intense to be able to be off of therapy.”  

So, I think in the end there’s no one-size-fits-all approach. It generally, for my clinic, comes down to a discussion with the patient talking about what their goals are: is it more important to be off therapy for some period of time and they’re willing to sacrifice a bit more intensive of a schedule? Or are they more appealing to be on a regimen that they’re on indefinitely provided that it still provides disease control and alleviation of the disease-related symptoms.  

Katherine:

What is the patient’s role in setting care goals? 

Dr. Coombs:

I think they should have a huge role; it should be a shared decision between the patient and their cancer doctor. I think at least as of now, there’s not one proven best therapy. We have a number of therapies that work extremely well. But they differ quite a bit with respect to the schedule, the possible side effects profile, and sometimes in the cost, depending upon the patient’s insurance. 

Knowing that there’s not a superior therapy, I think the best approach would be to discuss all of the therapies that are highly effective, and then compare and contrast what those therapies may look like for the patient and then make a shared decision.  

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.

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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 gonna 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 gonna be someone that’s gonna 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.

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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.

CLL Patient-Expert Q&A

Dr. Nadia Khan | CLL Patient-Expert Q&A from Patient Empowerment Network on Vimeo.

Is CAR T-cell therapy a cure for chronic lymphocytic leukemia (CLL)? What specific lab tests will I need to get a second opinion? CLL expert Dr. Nadia Khan answers questions from CLL patients and families. 

Have a question for a future Patient-Expert Q&A Email us: question@powerfulpatients.org with subject line: CLL Patient-Expert Q&A 

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Transcript:

Mary Leer:

Dr. Khan, first of all, thank you for being part of this program. 

Dr. Nadia Khan:

Thank you so much for inviting me to participate.

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.

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. 

Mary Leer:

Thank you, Dr. Khan. Here’s a question from Richard:  I am a CLL patient currently on “watch and wait.”  When is the right time and what tests should have been performed before seeing a CLL specialist? 

Dr. Nadia Khan:

Richard, thank you for your excellent question. There are a number of tests with respect to CLL that help us to prognosticate more accurately, and those would include either a FISH panel, fluorescence in situ hybridization for CLL which identifies this common amplification and deletions that have been described in CLL. Additionally, an IgVH mutational test and a TP53 sequencing test would be the three basic prognostic tests used to identify what kind of CLL a patient has. This testing should be repeated at any point wherein a patient is changing therapy or at any point where there’s a change in the clinical status of the patient. Outside of these standard tests, there are other molecular tests that can be ordered and are commercially available for use… For use by clinicians. These molecular tests can also identify changes within the CLL that can help to prognosticate at this time, outside of the standard tests that I mentioned to you, there are no proven benefits to other testing, but the results of additional testing can just really help inform your clinician about the likelihood of you needing treatment in the near future and the likelihood of response to therapy. 

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.

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 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.

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.

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 [VENCLEXTA] based 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 [VENCLEXTA] ramp-up to determine if patients can be transitioned from inpatient to outpatient ramp-up.

Mary Leer: 

Dr. Khan, this is our final question. 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.

Mary Leer: 

Dr. Khan, thanks for joining us today and answering all of these questions for our audience. Just a reminder to our audience, please take the CLL-Patient-Expert Q&A survey following this webinar.

Mary Leer: 

Dr. Khan, before we end this program,  what are you optimistic about for the future of CLL? 

Dr. Nadia Khan: 

So I’m very optimistic about the future of CLL therapeutics, we’ve already come to see excellent responses that are very durable with time-limited targeted therapy and immunotherapy approaches. In the future, it is likely that we will be using a more personalized approach to treating any given CLL patient using their genetic and molecular profile to decide on their treatment strategy, a single-agent approach versus multiple targeted therapies to eradicate CLL clones. In the future will be looking at endpoints like minimal residual disease, as well as clonal evolution to help guide our treatment strategy for patients with CLL