The Chronic Lymphocytic Leukemia (CLL) Support Center

Every person is unique, but when you face a challenge like chronic lymphocytic leukemia (CLL), you are never alone. Countless men and women, and some children, have faced exactly the same diagnosis and have survived and thrived. The following guide is designed to help you navigate your journey with the best information and resources that helped other survivors when they faced the same challenge.

TSC has scoured the Internet and assembled links to the very best CLL resources: articles, blogs, forums, and tools that can help you make better decisions and take action to overcome the range of physical, emotional, and other challenges that you face.

As you’ll see, we always welcome your ideas and suggestions to make this chronic lymphocytic leukemia (CLL) guide even more helpful to survivors like you.

JUST FOUND OUT

Survivors Say: The Best Resources for Chronic Lymphocytic Leukemia (CLL)

• Leukemia & Lymphoma Society: General Information About CLL Check out the Society's CLL page to get started on your understanding of this cancer.
• National Cancer Institute: Leukemia The NCI provides a thorough overview of CLL
• Mayoclinic.com: Chronic lymphocytic leukemia Symptoms, causes, treatment and finding support are all covered here in easy-to-understand language.

The Big Picture

Chronic lymphocytic leukemia is a type of cancer in which the bone marrow makes too many lymphocytes (a type of white blood cell).

Your Chronic Lymphocytic Leukemia

There are several different kinds of leukemia - here's a quite intro to each, and where CLL fits in:

Oncologychannel.com - Leukemia: Types

Understanding Your Symptoms

• Medicinenet.com: Leukemia Causes, Diagnosis, Information, Treatment and Symptoms
• Oncologychannel.com: Leukemia - Symptoms

Getting a second (or even a third) opinion regarding a serious illness such as CLL may be useful to help you feel confident about the course of treatment that's right for you:

National Cancer Institute: What You Need to Know About Leukemia - Second Opinion

Questions You Should Ask Your Doctor:

Leukemia & Lymphoma Society: What to Ask After Diagnosis

Your World with Chronic Lymphocytic Leukemia

Like you, the people closest to you are likely to feel many emotions after you share your diagnosis of CLL with them. They may feel fear, anxiety, anger, and depression. Here's a good reference to help them cope with these feelings:

Leukemia Bone Marrow Transplant Program: Family/Friends & Their Emotions

Learning as much as you can about your diagnosis can be among the best ways to cope with fear of the future and the unknown. It can also help your friends and family understand what you're going through. Use this MedlinePlus page on CLL as a good starting point:

MedlinePlus: Chronic Lymphocytic Leukemia (CLL) 

Chronic Lymphocytic Leukemia Myths

• Revolutionhealth.com: Cancer Myths and Facts

Information and Recommended Links for Survivors

There is no cure for CLL, but many people with this form of leukemia live for years in good health. So some patients will be advised by their doctor to follow a "watch and wait" approach and not undergo treatment at all.

Medical Treatment

Medical treatments generally include chemotherapy (drug therapy) and a stem cell transplantation may be useful in some patients. 

Leukemia - Treatments and Drugs - MayoClinic.com

Group Support

If you think you could use more emotional support after your diagnosis and/or during treatment, joining a support group -- whether in person or online --might be useful. Here are two good places to start:

• CarePages.com - Leukemia & Lymphoma
• ACOR Leukemia Links - Internet Leukemia Support Resources

Side Effects of Treatment

Leukemia & Lymphoma Society - CLL: Planning and Understanding Treatment

How do I receive help without being a burden to my family or friends?

Educate yourself about CLL and educate your family and friends. This will help them understand what's ahead for you in terms of treatment and the kind o support you'll need and for how long. Let them know, too, of the emotions and symptoms you're experiencing and what they can do to make you comfortable.

What do I need to find out from my insurance carrier?

• What will my insurance cover for CLL diagnosis, treatment, and beyond?
• Are my rates going to increase?
• Am I limited to what doctors I can see, the hospitals I can go to, and the treatments I can receive?
• Will my coverage end at any point?

What kind of doctors do I need?

You may be treated by oncologists (cancer specialists), medical oncologists (specialists in chemotherapy), hematologists (blood specialists), Chemotherapists, Radiation Therapists, Surgeons

Resources to find doctors

The National Cancer Institute provides this guide to help you find a doctor or a treatment facility.

List of books suggested by survivors

• Adult Leukemia: A Comprehensive Guide for Patients and Families
• Bone Marrow and Blood Stem Cell Transplants: A Guide For Patients by Susan Stewart 
• Childhood Leukemia: A Guide for Families, Friends and Caregivers (3rd Edition) by Nancy Keene

Information for Co-Survivors

How can I help

• Get connected with other co-survivors.
• Share your personal story and what has helped you to get through the dark times and thrive.
• Assist your survivor in researching new information and treatment options.

What to say

• Give personal testimony of your struggle as a co-survivor of someone with CLL.
• Encourage recovery in whatever ways helps your survivor.
• Offer unconditional support as much as you're able.

What not to say

• Don't give untruthful and unrealistic information.
• Don't offer information about medical treatments and statistics about CLL that you're unsure of.
• Don't focus on negative facts and statistics about CLL.

How to build a support network

• Set up a TSC co-survivor profile.
• Find resourceful support groups, blogs, and forums.
• Educate others close to your survivor on what you’ll all be facing, so they know how to provide meaningful support.

 

Remission / Recovery / Recurrence

Many CLL patients are able to live reasonably normal lives for long periods of time. The prognosis (outlook) for someone with CLL is poorer if lymphocytes have spread through the bone marrow; if the cancer is at a more advanced stage when it's discovered; and/or if the CLL has progressed to lymphoma or prolymphocytic leukemia, says the National Cancer Institute.

This U.S. News & World Report article discusses all aspects of managing CLL, including what to do when a relapse happens:

Managing Chronic Lymphocytic Leukemia

Give Back

As a survivor of CLL you are now prepared to use the knowledge you've gained to help others on the path to survival. Not only is this an act of kindness, but helping others may make it easier to cope yourself, and to find meaning in having been through this crisis and come out the other side to thrive as a survivor.

Not every treatment for CLL results in recovery. When you're facing end-of-life and palliative care, there are many options to help you through this very difficult time:

• American Cancer Society: Coping with Grief and Loss
  
• FamilyDoctor.org: Cancer - Palliative Care
• MedlinePlus: Hospice Care
• National Cancer Institute: Loss, Grief and Bereavement