- CLL is the most prevalent form of chronic leukemia in adults.
- By providing emotional support to a friend or family member with CLL, you increase their chances for an improved quality of life.
- To get involved, you can join communities, fundraise, and spread the word to raise awareness.
Whether you’ve been diagnosed with CLL, know someone who has the condition, or just want to contribute to a worthy cause, there are plenty of ways you can make a difference.
If you’re not sure where to start, check out the suggestions below for getting involved, raising awareness, and supporting research into CLL.
CLL stands for chronic lymphocytic leukemia. Leukemia is a type of cancer that affects your blood and blood-forming tissues, which includes your lymphatic system and bone marrow.
Leukemia can affect people of all ages. Though leukemia is the most common childhood cancer, it actually affects more adults than teens or children.
There are three types of leukemia, including:
- Acute myelogenous leukemia (AML). This affects both children and adults — in fact, it’s the most common form of acute leukemia in adults.
- Acute lymphocytic leukemia (ALL). This is the most common leukemia in young children, but it can affect adults as well.
- Chronic lymphocytic leukemia (CLL). This is the most prevalent chronic leukemia in adults.
CLL is most frequently diagnosed in people ages 65 to 74.
The American Cancer Society estimates that CLL accounts for about a quarter of new leukemia cases, with approximately 21,250 cases to be diagnosed in 2021.
A cancer diagnosis can bring up a range of emotions. When someone is diagnosed, they may need time to process the news.
Cancer Research UK notes that hearing a cancer diagnosis can leave you feeling numb, confused, angry, guilty, frightened, or uncertain.
If you find out a friend or family member has been diagnosed with CLL, you may feel some of those same emotions. You may also feel a strong urge to show that you care.
In order to offer better support to your loved one, it may be helpful to understand what they may be going through.
The American Society of Clinical Oncology (ASCO) offers several suggestions for those wishing to support a friend or family member with CLL or any form of cancer.
If someone you care about has been diagnosed, first consider:
- learning about CLL
- processing your own feelings so you can focus on your loved one
- trying to think about the situation from their perspective
There’s nothing wrong with needing some time to gather information, process your feelings, and consider your reactions before turning your focus to your loved one. Doing this means you can better address their needs and feelings when you’re ready to reach out.
The American Cancer Society adds that by providing emotional support to your friend or family member, you can help them have a more positive outlook and improved quality of life.
The organization recommends showing support by:
- calling and sending notes
- making time for personal visits
- talking with your friend
- helping with errands and projects
- giving them small gifts that can entertain them or let them know you’re thinking of them
The most important thing to do when supporting a friend or family member with CLL is to make sure to show them you love and support them.
Each relationship is unique, with its own dynamics — so your loved one may not respond the same way as another person might (or even as you might). Some people may want space or privacy, while others might want frequent calls and conversations.
It’s important to follow their lead and respect their boundaries when considering what kind of support to offer. The best kind is support that meets their individual needs and preferences.
Whether you’ve been recently diagnosed with CLL, are a survivor, or know a friend or family member with CLL, here are some ways to get involved.
Join the Leukemia & Lymphoma Society
The Leukemia & Lymphoma Society (LLS) provides an online community for CLL survivors and family members.
You can join for free, and it offers benefits like:
- help finding support
- resources for learning more about leukemia
- strategies for coping with the cancer
You can join this community here.
Join an online support community
There are several online communities and support groups to choose from that offer specific and nonspecific cancer support. You or a loved one may want to consider the following options, which are geared more toward cancer or CLL:
- MyLeukemiaTeam gives you a personal connection to other cancer survivors, who can provide emotional support and guidance.
- CancerCare offers links to several different cancer communities.
- Cancer Connect reports on new or developing cancer care and treatments.
- Friend for Life Cancer Support Network offers one-on-one support for both people with CLL and caregivers.
Check out the CLL Society’s support page
The CLL Society offers a support page that includes a large array of:
- information about CLL
- research news
- personal stories
- support group connections
- details about upcoming events
Join or create fundraisers or donate online
Another way to get involved is to help the LLS raise money for cancer research. You can get more information on joining or even setting up your own fundraiser event here.
Another way to raise money for research is to provide direct donations.
The CLL Global Research Foundation suggests easy ways to raise money for CLL on its website. You can give a direct donation or use services that make a donation when you make purchases online.
You can sign up or get more information here.
Another way to show support for a cause is to learn more about treatment and research. As with other cancers, research into CLL is ongoing.
According to the LLS, the current goals of CLL research are to:
- develop therapies that will work successfully in areas where others may have been less effective
- make truly curative therapies
- decrease the side effects of treatment
The organization also indicates that the following therapies are under investigation:
- new targeted treatments including kinase inhibitor therapy, combinations of antibodies with other targeted drugs, and monoclonal antibodies
- immunomodulatory drugs to stimulate the immune system to attack the cancer cells
- PD-1 checkpoint inhibitors to help the immune system find and target cancer cells
- CAR T-Cell therapy to teach immune cells to recognize and then attack cancer cells
Researchers are also studying the benefits of early treatment.
What about clinical trials?
Clinical trials allow researchers to investigate many things, including the effectiveness of new medications or therapies for various conditions and diseases.
Reasons for joining clinical trials vary. Some patients opt to join when other treatments aren’t working for them. Others join because they want to help advance the medications related to their condition.
Not everyone is a candidate for clinical trials. If you or a loved one have CLL and are interested, you’re likely to find many opportunities available. In some cases, a clinical trial may be the best option for treatment.
The National Cancer Institute lists dozens of clinical trials for CLL. The studies look at a variety of aspects of CLL treatment, including new treatment options and effects of early treatment.
If you or someone you care about are interested in getting involved in a clinical trial, you can look for available studies at ClinicalTrials.gov. The site lists hundreds of studies focused on CLL research, so you can learn more information and check eligibility.
Since online research can be overwhelming — especially given the number of studies available — you might want to consult with your doctor about potentially joining a study. They may be able to:
- help you find a local study to get involved with
- help determine whether you’re eligible
- advise whether getting involved in a clinical trial is the best step for you
Being diagnosed with CLL can feel lonely, but it doesn’t mean you’re alone.
You can get involved in a variety of groups, research clinical studies, or connect with others living with CLL in a few simple steps.
If a loved one has been diagnosed with this condition, your involvement in CLL awareness and support is one way to show them that you care.
If you’ve been diagnosed with CLL and feel overwhelmed, reach out to friends, family, or a trusted healthcare professional. They can help you find support and encouragement when you need it most.