How to Get Support When You Have Chronic Lymphocytic Leukemia

Medically Reviewed by Laura J. Martin, MD on November 17, 2022
Written by Kristen Fischer
5 min read

When you've been diagnosed with chronic lymphocytic leukemia (CLL), the right support can have a big effect on your quality of life.

While it's often a slow-growing type of cancer, there's no cure for CLL. So you could live with it, and the uncertainty a cancer diagnosis brings, for some time. Treatments may slow CLL and address its symptoms, but they can be draining, and so can the cancer itself. Those are some of the areas in which support can make a difference.

Support can take many forms, including: 

  • Emotional assistance from loved ones, others with CLL, or mental health professionals
  • Practical care for the needs of daily life
  • Educational support to help you understand your condition and know what to expect
  • Financial help with medical and other bills

When you understand the condition, know what to expect, and stay aware of the latest treatments, it can give you greater peace of mind. You'll also be better prepared to discuss your condition and your treatments with your doctor and others.

A good place to start is with a conversation with your doctor. It helps to make a list of questions beforehand, so you'll remember. For general educational resources, check out the CLL Society, the Leukemia and Lymphoma Society, and the American Cancer Society.

A few things you may want to know:

  • What type of CLL do you have and what stage it's in?
  • What treatments are available, their effectiveness, and their side effects?
  • What does your doctor expect your outlook to be?
  • What kind of care team you’ll need, including specialists, therapists, nutritional support, etc.?
  • How often you'll need follow-up appointments?
  • How best to keep track of your lab reports?
  • What complications you can have?

Talking to your loved ones about your CLL can open up more ways for you to get support, both emotionally and practically.

But sometimes, family members and friends don't want to talk about it. The idea of cancer may frighten them, or they're afraid they won't know what to say. Or you might feel uncomfortable bringing up the subject.

These tips can help: 

Decide who to tell – and how to do it. You’re in charge of who you tell, how you tell them, and when you tell them. It’s OK not to tell everyone in your life, just as it’s OK to break the news however you see fit. You may choose different approaches for different people based on your relationship or their role in your life. For instance, in the workplace, you might tell only your boss, and only if you need to take time off. And you may give them few details compared with what you tell your best friend.

Speak honestly. There’s no perfect way to spark a conversation, but honesty can be empowering both for you and your loved ones. Encourage people to speak openly with you too. This may improve your relationships, and at the very time, you can have extra support.

Let others help. Others likely want to help, maybe by listening to you or by taking you to medical appointments. Let them know if you plan to take them up on their offers. Be specific about what you need. You may not know right off the bat how they can best help you, and it's OK to tell them so.

Know your boundaries. If you’re not ready or willing to talk about your condition with someone, say so. People may say unhelpful things, or want to talk about something that feels too sensitive. It may help to think of responses ahead of time to address these issues. Because of their own histories or feelings, not everyone will be able to support you the way you need.

That's one reason some people with CLL prefer to see a mental health professional. Your doctor can refer you to a therapist, counselor, or social worker who specializes in treating people with cancer. A professional can help you work through your emotions and give you tools for coping.

Sometimes, the best support comes from people who have been in your shoes. 

There are in-person and online support groups, especially for people with CLL, their caregivers, and loved ones. You may be able to find specialized groups that fit your situation, such as one for LGBTQ+ people with cancer.

Support groups can help you process feelings alongside others who've dealt with the same challenges. Studies have shown that being part of a cancer support group can help ease anxiety and depression, boost your self-esteem, and improve your relationships.

Your doctor or cancer center can connect you to support groups in your area. Look for online groups through the American Cancer Society, the CLL Society, and Leukemia and Lymphoma Society.

You may have to try more than one group before you find one that's a good fit for you.

 

Cancer affects all aspects of your life, including your finances. Along with doctor visits and CLL treatments, you may have expenses for:

  • Equipment, rehabilitation, and caregiving
  • Transportation to appointments
  • A place to stay during treatment
  • Nonmedical support such as meal delivery, counseling, and childcare
  • Pet care
  • Missed time at work (such as using Family Medical Leave Act and/or disability insurance)

Talk to your insurer about how much of your care is covered and what you can expect to pay. You may wish to ask them to assign you a case manager as a point person for information and assistance.

Government and nonprofit organizations, as well as private entities like pharmaceutical companies, have programs to help with the costs of cancer care. Among them are:

Patient assistance programs (PAPs). If you're uninsured or underinsured, ask your doctor's office or cancer center if they can refer you to a PAP for your medication. Most drug manufacturers offer these programs, which provide free or low-cost drugs for people who otherwise couldn't afford them.

Government programs. Medicare, Medicaid, and Social Security are federal programs that serve people who are older, have low incomes, or are disabled. Some state governments also have programs to aid low-income residents with medical and living costs. It takes time for government agencies to process applications for these programs. So the sooner you apply, the sooner you'll get help.

Nonprofit programs. Groups like the Leukemia and Lymphoma Society and American Cancer Society have programs that can grant financial aid for insurance co-pays, nonmedical expenses, and more. Your community may have local nonprofit groups that can provide financial help as well as practical assistance like transportation to medical appointments.

The Cancer Financial Assistance Coalition offers a searchable database to help people with cancer find sources of assistance.