A Patient's Journey. What You Need To Know.

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patient

Our goal with the steps below is to help streamline the process and provide YOU with an easy way to find the information you’re looking for.

The information challenge facing CLL Patients

The typical experience of newly diagnosed CLL patients is one of anxiety and confusion. They’ve been told by the doctor that they have a cancer, but that it won’t be treated immediately and not to worry because it is an indolent illness for which they may never have to be treated. They then rush home to search the Internet to find out more about CLL, also known as consulting Dr. Google.

The trickle of information from the doctor becomes a flood of information on the Internet. A search for CLL on Google returns 27 million results: good sites and bad sites; up to date and out of date; medical science and alternative medicine; all kinds of jargon and acronyms; all of which makes it difficult for patients to understand their diagnosis.

What is CLL?

CLL: A Cancer of the Blood

New York hematologist Dr. Nicole Lamana describes what happens when she diagnoses patients for CLL

CLL and SLL: two forms of the same illness

Describes the principal difference between CLL and SLL

Overview of CLL

Description of the symptoms, risk factors, complications

Why Did I Get CLL?

It is not known what causes CLL. Like all cancers, CLL results from genetic mutations, but the causes of the mutations that lead to CLL is not understood.

There is evidence that CLL can run in families, although the risk is low, as is explained in the link below.

Governments in the US and Canada provide disability benefits to military veterans who have CLL and who were exposed to herbicides such as Agent Orange during their military service. This policy was put in place because there is evidence of an association between CLL and herbicide use. It should not be interpreted as proof that exposure to herbicides cause CLL.

Familial CLL

Does CLL run in families? Yes, but not very often

Why Watch & Wait

As a chronic condition, CLL usually evolves slowly and therefore does not usually require immediate treatment. These links describe the reasons and advantages of active surveillance until treatment is required.

The Significance of Watch-and-Wait

New York hematologist Dr. Nicole Lamana explains the reasons for active surveillance (watch and wait)

What Does Watch and Wait Mean for You

The benefits of waiting before treatment, what you can do and questions to ask your healthcare team

How Long Will I Live?

With the advent of new treatments in the past decade, CLL patients have been living longer. How much longer is not yet clear, as more time needs to pass before survival rates for 10 years or more can be properly evaluated.

In Canada, the 5-year net survival for CLL is 83%. This means that about 83% of people diagnosed with CLL have survived for at least 5 years, possibly longer.

In the United States in 2017, the 5 year survival rate is estimated to be 87.2%

Get Support

Support services offered by the Leukemia and Lymphoma Society of Canada – Click Here

Support group directory from Lymphoma Canada – Click Here

Support services offered by Lymphoma Canada – Click Here

Get Informed

Staying on track with your CLL by Lymphoma Canada

The CLL Journey by the Leukemia and Lymphoma Society of Canada

Useful International CLL Websites

A list of CLL related acronyms and abbreviations produced by the CLL Society

A monthly newsletter about CLL research and medical developments

“Living Well with CLL” is a monthly newsletter consisting of three main sections: news from CLL experts, research news as well as soul support and maybe a recipe or two. These are presented as links to articles and videos from reputable Internet sources.

The newsletter is produced and emailed by Marcyne Heinrichs, a friend of CLL Canada.

Living well with CLL! Is really it possible to live well with a disease? Indeed it is. These links will help CLL patients adjust to their new normal.

American Cancer Society – How to adjust to life with cancer, not specific to CLL

ABBVIE UK – Patients in the UK speak about living with CLL

WEB MD – Tips for daily life with CLL

Healthline – Tips for balancing CLL with your daily life

Sharecare – Strategies to help reduce feelings of anxiety and feel more in control when living with leukemia.

Know your CLL – Patients in the USA speak about managing emotions, communication with loved ones and taking an active role in managing your care

Infections and second cancers

CLL depresses the immune system, making CLL patients vulnerable to repeated infections. The first two links will provide guidance on preventing and managing infections.

Another consequence of a depressed immune system is an greater chance of developing another cancer compared to the general population.

Leukemia Care UK – The major symptoms of infections and what to do about them.

Leukemia and Lymphoma Society of Canada – The signs of an infection and how to prevent them

American Cancer Society – The cancers that people with CLL have an increased risk of developing

American Cancer Society – A doctor discusses secondary malignancies in people with CLL

Immunity and Vaccinations

Vaccination and other strategies to deal with a compromised immune system.

Healthline – Tips to manage CLL while being immunocompromised

Video Journal of Hematological Oncology – A study of vaccine response in CLL patients

CLL Society – Review of available vaccines and their suitability for CLL patients

Fatigue

You know you are suffering from fatigue is when resting will not overcome the exhaustion you feel. It can be a symptom of CLL, but it can also be caused by something else. These links will help you understand fatigue and provide advice on how to deal with it.

Understanding CLL related fatigue

How to manage fatigue with CLL

Five ways to manage Leukemia fatigue

Steps to combat fatigue and tips to regain control you life.

Anxiety/Stress

The CLL journey can be an emotional roller coaster, with patients experiencing a whole range of emotions and feelings. These pages provide advice on how to cope.

Healthline – Tips to manage stress with CLL

American Cancer Society – Dealing with anxiety, depression and distress

American Cancer Society – Common feelings and emotions, and how to cope with them

MD Anderson – Common psychosocial issues that CLL patients encounter

Tracking Tools

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Zamplo – Use Zamplo to improve your physical and mental health.

MyTherapy: Medication Tracker Med & Pill Reminder

With the easy to use CLL Watch and Wait Tracker application, you can learn more about CLL & SLL, and track your symptoms and wellbeing over time.

The Importance of Tracking Your CLL – Keeping track of your symptoms and test results can make a big difference when you’re living with chronic lymphocytic leukemia (CLL).

Dealing With Anxiety

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National Library of Medicine – Depression, anxiety and quality of life in a chronic lymphocytic leukemia cohort

7 Ways to Manage Stress with CLL – If you’re living with chronic lymphocytic leukemia (CLL), you’ve probably heard it’s very important to manage your stress.

If you’re living with chronic lymphocytic leukemia (CLL), you’ve probably heard it’s very important to manage your stress.

Understanding Blood Test Results

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A blood test or “blood work” uses your blood to find out many things about your health. For example, a blood test can be used to:

Understanding Your Complete Blood Count (CBC) Tests – A complete blood count (CBC) is a common blood test that your doctor may recommend to.

CLL Symptoms

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American Cancer Society – Signs and Symptoms of Chronic Lymphocytic Leukemia

The Importance of Tracking Your CLL – Keeping track of your symptoms and test results can make a big difference when you’re living with chronic lymphocytic leukemia (CLL).

LLS.org/LLSC.org – Many people are diagnosed with CLL even though they do not have any symptoms.

Chronic Lymphocytic Leukemia – NORD gratefully acknowledges Jennifer R. Brown, MD, PhD, Director, CLL Center, Dana-Farber Cancer Institute, Associate Professor of Medicine, Harvard Medical School, for the assistance in the preparation of this report.

IWCLL Guidelines Criteria

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Services

What treatments are available in Canada

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Pros and cons of different treatments

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Checklist of items to consider when choosing a treatment

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Status of treatments in the regulatory process

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Treatment One

Side effects:
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Disease flare during temporary interruption:
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Neutropenia:
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Infections:
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Treatment Two

Side effects:
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Disease flare during temporary interruption:
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Neutropenia:
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Infections:
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Treatment Three

Side effects:
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Disease flare during temporary interruption:
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Neutropenia:
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Infections:
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Drug navigators

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Get a second opinion

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Get the most out of doctor’s appointments

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Clinical trials

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Getting funding for treatments not yet reimbursed

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Pharma company resources

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Richters

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Low platelets

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Low red blood cells

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Low neutrophils

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