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Chronic Lymphocytic Leukemia (CLL)

Overview

Supportive Care and AE

Treatment Considerations

Clinical Resources

Aspects of Supportive Care

CLL management and supportive care involve shared decision making between the patient and the medical team to ensure the following:

Deciding on a treatment plan that matches patient needs and goals^1,2

Patient staying up to date with vaccinations³

Proactive infection prevention through mask wearing and frequent handwashing⁴

Regular primary care provider visits, dermatologic screening, and other cancer screening^5-8

Support system for patients with CLL^9-11

CLL is a lifelong diagnosis, and patients benefit from strong social support

Medical care team

Orchestrate care
Provide educational resources

Mental health
Treat emotional toll of disease

Social worker
Help identify support

Patient support groups

Solidarity through similar experiences
Patient education

Caregiver

Attend patient visits
Partner with patient at home

To gain a medical oncologist’s perspective on supportive care and education for patients with CLL, you will find Dr Thompson’s and Dr Roeker’s video in the related resources at the bottom of the page.

Adverse Event Management

Common adverse events associated with CLL treatments

Each CLL therapy has a unique adverse event profile; however, certain adverse events are common to many treatment types and require timely clinical management and/or prophylaxis

Infection

(13%-81%)^12-22,a

Dyspnea

(9%-28%)^{18,20,21,23,b}

Anemia

(5%-67%)^{12,14-16,19-27,a}

Diarrhea

(14%-51%)^12-25,27,a

Thrombocytopenia

(6%-24%)^{12,16,19-28,a}

Fatigue

(5%-36%)^{13-15,18-28,a}

Arthralgia

(6%-26%)^{13-16,23,28,c}

Headache

(2%-38%)^{13,15,18,22,23,25,28,a}

^aRange based on data from patients with advanced CLL treated with chemoimmunotherapy, CAR T-cell therapy, and targeted therapy (BCL-2 inhibitors ± anti-CD20 antibody, BTK inhibitors, and PI3K inhibitors ± anti-CD20 antibody)

^bRange based on data from patients with advanced CLL treated with chemoimmunotherapy and targeted therapy (BCL-2 inhibitors ± anti-CD20 antibody, BTK inhibitors, and PI3K inhibitors ± anti-CD20 antibody)

^cRange based on data from patients with advanced CLL treated with chemoimmunotherapy and targeted therapy (BCL-2 inhibitors ± anti-CD20 antibody and BTK inhibitors)

Infection prevention in patients with CLL

The 5-year risk for severe infections in CLL is 26%²⁹

Recommended vaccinations for patients with CLL^30,a

Recombinant hepatitis B
COVID-19 vaccine
Pneumococcal vaccine
Seasonal influenza vaccine
Recombinant zoster vaccine

^aAs indicated by clinical practice guidelines. Patients with CLL should only receive inactivated (non-live) vaccines³

Strategies for infection prevention in patients with CLL

The 5-year risk for severe infections in CLL is 26%²⁹

Bacterial infections³⁰

No routine antibiotic prophylaxis
Ig replacement therapy for severe hypogammaglobulinemia and/or recurrent or severe infection
Monitor ANC

Fungal infections³⁰

Consider prophylaxis
- In frail older patients with R/R CLL and/or prolonged neutropenia
- Those with previous fungal infections
- Patients receiving chronic, concomitant steroids

Viral infections³⁰

Monitor for infection/pretreatment of HBV, HCB, HIV, HSV 1/2, VZV, and CMV prior to starting CLL therapy
If HBV reactivation detected, preemptive therapy with antivirals

Secondary primary malignancies in patients with CLL

The 5-year risk for severe infections in CLL is 26%²⁹

Standardized incidence ratios^a for second primary cancers after CLL³¹

Incidence ratios of secondary primary malignancies in patients with CLL — The graph illustrates incidence ratios of secondary primary malignancies in patients with CLL of 1.63 for all cancer types, 1.67 for solid tumors, 1.42 for hematologic malignancies, 2.74 for melanoma of the skin, and 4.82 for squamous cell carcinoma of the skin.

^aStandard incidence ratio is a ratio of the number of cancers observed in a given population compared with the number expected.

Strategies to reduce the incidence of secondary primary malignancies in patients with CLL

An increased risk of secondary primary malignancies in patients with CLL necessitates timely cancer screening^5,31

Annual dermatologic skin screening is recommended for skin cancer prevention⁵

Cancer screening guidelines should be followed closely for breast, cervical, colon, prostate cancers, and lung cancer for smokers⁶

To gain a medical oncologist’s perspective on managing risk of infection and secondary malignancies in patients with CLL, you will find Dr Thompson’s and Dr Roeker’s video and an infographic on supportive care in the related resources at the bottom of the page.

Multidisciplinary Teams to Manage CLL

Composition of the multidisciplinary team in the care of patients with CLL

Composition of the multidisciplinary team in care of patients with CLL

Multidisciplinary care involves cooperation between different specialties in order to improve patient care, and has become a major focus of contemporary cancer management^32,33

A multidisciplinary care team in oncology can include³⁴

Core team: participates in tumor board meetings and primary decision-making and usually consists of medical oncologist/hematologist, radiation oncology, benign hematologist, pathologist, nurses, and cardiologist
Extended team: participates in management of patient care and social services. It can include genetic counselor, pharmacist, nurse navigator, APPs, palliative care, primary care, and financial counselors

Potential benefits of multidisciplinary care

Multidisciplinary teams involve a variety of staff that work together to educate and support the patient to be engaged and empowered in their health care³⁵

Support from multidisciplinary teams increases the use of shared decision making among hematology/oncology advanced practice professionals³⁶

Multidisciplinary teams encourage proactive patient communication about side effects and symptoms, help support patient adherence to oral therapy, and offer resources to help patients living with CLL deal with difficulties associated with chronic disease, such as financial toxicity and psychosocial distress³⁷

For more information on shared decision making in hematologic malignancies, please see shared decision making slide deck and infographic in the related resources at the bottom of the page.

Related Resources

Downloadable PDFs

CLL Supportive Care: Manage Risk of Infections and Secondary Cancers

Infographic for HCPs on strategies for infection prevention and reducing the incidence of second primary malingnancies in patients with CLL.

CLL Supportive Care for Patients

Infographic for HCPs to counsel patients with CLL about infection prevention, staying up to date with vaccines, and screening for second primary malignancies.

Factors Influencing Adherence to Oral Anti-Cancer Medications in B-Cell Malignancies

This infographic is intended to educate health care providers on factors that influence oral anti-cancer medication adherence.

Supporting Patient Adherence to Oral Anticancer Medications in B-Cell Malignancies

This slide deck is intended to educate health care providers on factors influencing medication adherence and provides tools and resources, and guidelines to help improve adherence for their patients.

CLL Cardiotoxicity Infographic

This infographic is intended to provide Health Care Providers information on Best Practices for Managing BTK Inhibitors in Patients with a history of Cardiac Comorbidities.

CLL Cardiotoxicity Slide Deck

In this slide deck, HCPs will gain deeper knowledge of appropriate assessment, monitoring, and management of cardiotoxicity-associated complications for optimal use of BTK inhibitors in CLL, particularly in patients with baseline risk factors.

(00:10) Meghan Thompson:
When I think about patients with CLL, one of the unique things I think that we need to focus on as providers is that this is a cancer of your immune cells and there are immune consequences. One of the things we see in patients both on treatment or off treatment is a higher risk of infection. And when we're in the clinic, we really need to focus on ways we can prevent infection in these patients and make sure that we're providing that supportive care on the whole.

(00:43) Meghan Thompson:
So one of the things we do see is recurrent infections, a lot of times recurrent sinopulmonary infections. And so one of the things that we can do is check patients' IgG levels. Patients with CLL often do have hypogammaglobulinemia or low IgG levels and we can actually give intravenous infusions of IVIG actually subcutaneous IVIG in some cases to prevent future infections and follow along those patients levels. Another thing that I think is really important is focusing on vaccines as a modality of prevention. Now we know that patients with CLL might not have as robust a response as someone without CLL with an intact immune system, but any vaccine that is not live and is otherwise recommended for patients at that age group or immunocompromised patients, I do counsel patients on when they come into the clinic. So this can include the flu vaccine every year, COVID-19 vaccines, the recombinant zoster vaccination as well as pneumonia vaccination. And each visit we kind of chat about where they are in their vaccine completion timeline to have patients be on track as a method of prevention.

(02:02) Lindsey Roeker:
What are some of the ways in your clinic? I know there's some other issues that you also focus kind of beyond just the disease itself, but also the implications of the disease.
Absolutely. So I talk to my patients about the fact that their immune systems are supposed to be watching for infections and cancers and the CLL cells are actually distracting to their immune system. It kind of gives patients this way to visualize what's happening in their body. So I totally agree. I talked to them about immunizations and making sure that we're staying up to date on all non-live vaccines, so anything that should be indicated for a general population and then more specifically for our patients with CLL.

(02:46) Lindsey Roeker:
The other thing I think about is cancer screening. So we know that patients have an increased risk of non-melanoma skin cancers, and I talk to my patients about seeing dermatology once a year for a full body skin check to ensure that we're not missing any basal cell or squamous cell carcinomas that could be removed before they become bigger or more invasive.
I also talk to patients about staying really vigilant about their age appropriate cancer screening. So I say, I don't need you to do anything extra, but I want to make sure that we're staying up to date on the stuff that we should be doing anyway.

(03:16) Lindsey Roeker:
So mammograms when they're due, pap smears when they're due, colonoscopies, when they're due for patients with smoking history, thinking about that lung cancer screening, PSA checks, things like these are really important because our patients do have that increased risk of cancer and if we can catch things early and prevent them from becoming bigger issues, that's certainly a great thing for our patients. And totally agree with you in terms of the hypogammaglobulinemia, if patients have these recurrent infections, we want to ensure that we're providing the best care that we can. If they have recurrent infections with hypogammaglobulinemia, IVIG can be very helpful for patients and that can be an infusion multiple times a year.

(04:03) Lindsey Roeker:
So we use kind of Nadir levels of IgG to guide how often we should be giving IVIG and that can be a really helpful piece to avoid infection for patients. When patients are going on to therapy. We also think about what kind of prophylaxis do we need? Often with chemotherapy or with patients who are neutropenic, we have these kind of knee-jerk reactions to what kind of prophylaxis we need. For patients with CLL who are receiving novel agents, often routine prophylaxis isn't actually needed. So patients who are going on to these continuous or time-limited therapies that are novel agent-based really don't need to be on routine prophylaxis unless they have a history of some infection that makes me think that they need to be on that prophylaxis. So patients who have a history of recurrent shingles or recurrent HSV outbreaks, those are patients where I consider keeping them on antiviral prophylaxis. Patients who have a history of PCP, I consider keeping them on PCP prophylaxis or PJP prophylaxis while they're on therapies. But as a rule of thumb, we don't need to be putting these patients on prophylaxis.

(05:16) Meghan Thompson:
Yeah, I think that's a really important point that we have these general categories, the infection prevention as well as the secondary primary malignancy in prevention and screening, but also that really this is such a heterogeneous group and disease with patients with CLL, that there are those individualized circumstances, looking at their infection history and really personalizing both the prophylaxis in terms of medication when they're on therapy, as well as that IVIG prophylaxis.

(05:53) Lindsey Roeker:
Great point.

What is your approach to supportive care and preventive measures for patients with CLL?

Dr. Lindsey Roeker and Dr. Meghan Thompson discuss their approach to supportive care for patients with CLL including infection prevention and screening for primary second malignancy.

(00:10) Lindsey Roeker:
Another piece of the care of a CLL patient is that many people come into clinic hearing that they have a new cancer and then we say, 'Okay, for now, we're going to watch you.' And that is an incredibly challenging thing for many patients. That's an adjustment in how they see themselves and their health status, and that requires a period of adjustment. So through that phase, I also make sure that our team is available to support people. That can include involving social work or involving psychiatry because often these patients are adjusting to a new phase of their life, and being there to support that is important.

(00:50) Lindsey Roeker:
The other thing I talk to patients about is, where are the reputable sources? Because finding resources that are honest and realistic are important. And as we all know, patients can get online and find some very misdirected or misguided information. So I refer patients to some of the professional societies that have great resources for patients with CLL. And specifically, I think about LLS, LRF. There's a CLL society. These are some really great resources available who have online presences as well as written information that can be very helpful for our patients.

(01:30) Meghan Thompson:
I agree. I also have used those resources and I have the same thing in my clinic. A lot of times patients even find patient support groups helpful. I think it is a situation that you already highlighted where it is a disease that's very different for different individuals, which can make finding this information, I think, all the more important, approximately a third of patients with CLL might never need therapy and are on a program of active observation and these supportive care measures that we've highlighted. Another third of patients might need treatment right away at the time of diagnosis, and approximately another third of patients don't need treatment right away, but will need treatment at some point during their disease course. And so finding where they fit in that information and having the care team guide patients to the appropriate resources, I think is really, really important.

(02:27) Meghan Thompson:
So I think one of the things that I commonly encounter in the clinic with a chronic disease, especially one that we might not need treatment right away, is who is the patient support system? I think the medical team is a vital part of that support system, but I found that patients really benefit from identifying other sources too.

(02:52) Meghan Thompson:
One of the things that I found that many of my patients really have found useful is educating themselves, both through the visits we have together with the patient, but other resources, educational resources. There's patient support groups out there, through national societies or even local groups that patients find important. And then, a lot of my patients find it really helpful to have a caregiver, another person as another set of ears during the visit and really partnering with them at home, outside of clinic visits, living alongside the disease in everyday life. I think that looks differently for every patient. And bringing in expertise if a patient can't identify that social support on their own, a social worker is really important to really make sure that they're maximizing their healthcare and really understanding the information and coping with the diagnosis.

How do you support patients diagnosed with CLL?

Dr. Lindsey Roeker and Dr. Meghan Thompson share their approach to supporting patients diagnosed with CLL and the importance of support systems for patients.

ANC=absolute neutrophil count; APP=advanced practice provider; BCL-2=B-cell lymphoma 2; BTK= Bruton’s tyrosine kinase; CAR=chimeric antigen receptor; CD20=cluster of differentiation 20; CLL=chronic lymphocytic leukemia; CMV=cytomegalovirus; HBV=hepatitis B virus; HCP=health care provider; HCV=hepatitis C virus; HIV=human immunodeficiency virus; HSV=herpes simplex virus; Ig=immunoglobulin; KOL=key opinion leader; PI3K=phosphatidylinositol 3 kinase; R/R=relapsed/refractory; SCC=squamous cell carcinoma; VZV=varicella zoster virus.

References

Katz SJ, et al. J Oncol Pract. 2014;10(3):206-208.
Brown R, et al. J Clin Oncol. 2012;30(8):857-862.
CLL Society. Accessed August 12, 2024. https://cllsociety.org/2022/03/vaccinations-for-patients-with-cll-sll
LLS. Infections. Accessed August 12, 2024. https://www.lls.org/treatment/managing-side-effects/infections
Mansfield AS, et al. J Oncol Pract. 2014;10(1):e1-e4.
Welch A. Recognizing secondary malignancies in CLL. Accessed May 8, 2024. https://www.onclive.com/view/recognizing-secondary-malignancies-in-cll
Schneider MA. When a cure isn’t an option. Accessed August 12, 2024. https://ashpublications.org/ashclinicalnews/news/7672/When-a-Cure-Isn-t-an-Option
HealthTree Foundation for CLL. Infection prevention for CLL patients with Dr. Meghan Thompson. Accessed August 12, 2024. https://healthtree.org/cll/community/articles/cll-infection-prevention-dr-meghan-thompson
Bell R. J Adv Pract Oncol. 2017;8(5):462-473.
Frankly Speaking About Cancer. Accessed August 12, 2024. https://www.cancersupportcommunity.org/sites/default/files/fsac/CLL_Improving_Communication_with_Your_Patients.pdf
Academy of Oncology Nurse & Patient Navigators. Navigating chronic lymphocytic leukemia: the critical importance of the first 90 Days. Accessed August 12,2024. https://aonnonline.org/navigation-tools/4879:navigating-chronic-lymphocytic-leukemia-the-critical-importance-of-the-first-90-days
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Association of Community Cancer Centers. Multidisciplinary chronic lymphocytic leukemia care. Accessed August 12, 2024. https://www.accc-cancer.org/docs/projects/chronic-lymphocytic-leukemia-(cll)/cll-models-of-effective-care-delivery.pdf?sfvrsn=3ebbf592_2

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Aspects of Supportive Care

Support system for patients with CLL9-11

Adverse Event Management

Common adverse events associated with CLL treatments

Infection prevention in patients with CLL

Strategies for infection prevention in patients with CLL

Composition of the multidisciplinary team in the care of patients with CLL

Related Resources

Downloadable PDFs

What is your approach to supportive care and preventive measures for patients with CLL?

How do you support patients diagnosed with CLL?

References

Please rate your satisfaction with the content on the following statements:

Please rate your satisfaction with the content on the following statements:

Support system for patients with CLL^9-11