Making sense of it all is the goal of CLL Canada’s Information and Resource Centre,
a guide for patients looking for answers to their CLL questions on the Internet.
There comes a time in our CLL journey when we need answers.
Maybe we have just been told we have a blood cancer with an incomprehensible name, but the doctor says not to worry, it’s watch and wait, no need to treat for now, maybe never. What is this all about?!?
Maybe we’ve been able to ignore our CLL while in watch and wait, but now a first treatment looms, or perhaps a second or third, and with it, all sorts of questions and apprehensions.
Maybe we need help and advice to manage the impact of our CLL on our family life, our mental health, or our work life.
Whatever the scenario, we turn to the Internet for answers to pressing questions. The trickle of information from the doctor becomes a flood of web sites. The good, the bad and the out of date. It’s hard to find exactly what we are looking for; it’s hard to make sense of it all.
What you will find in the CLL Information and Resource Centre
This page offers people with CLL and their caregivers a road map by which to navigate the CLL journey, with links to reliable, quality information to answer the questions that typically arise at each stage of the CLL journey. Many of the Internet sites we link to are worth exploring for additional information on CLL.
When you click on a bar below, a menu will open presenting a variety of links to Canadian and international sources. Be sure to scroll down each menu, as there can be up to six sections in each one.
We welcome any comments. Should you have suggestions on topics to cover or websites to link to, please send them to us for review. You can reach us at cllcanada.org@gmail.com.
All the best for your CLL journey.
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
CLL 101
Dr. Nicole Lamana’s presentation to the 2018 CLL Live conference
Testing
Tests serve two purposes for CLL: Firstly to diagnose the disease; secondly to determine the most appropriate treatment. It is important to understand the specific type of CLL that you have in order to make the right choice of treatment.
Testing for CLL
These three websites provide an overview of the types of tests that are done to diagnose and treat CLL.
Test Before you Treat
The ability of some types of CLL to resist certain therapies and their sensitivity to others is critical in tailoring the appropriate therapy.
FISH and Flow Cytometry tests
A discussion of the two most common tests: FISH and flow cytometry.
Bone Marrow Biopsy
The bone marrow biopsy is still used, but less than previously.
CT Scans
A panel of doctors critique the use of CT scans for CLL.
Lymph nodes biopsy
This biopsy is used for SLL, where the CLL cells are in the lymph nodes and not in the blood.
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 and better lives. How much longer is difficult to say, since any given patient’s CLL journey depends on many different factors, but many patients today are living a normal life expectancy.
How long will I live with blood cancer?
An in-depth examination of this difficult to answer question
Get Support
Support services offered by the Leukemia and Lymphoma Society of Canada – Click Here
Support services offered by Lymphoma Canada – Click Here
Get Informed
Staying on Track With your CLL by Lymphoma Canada
- English website
- Site Internet en français
- Patients guide – English PDF document
Chronic Lymphocytic Leukemia (CLL) by the Leukemia and Lymphoma Society of Canada
Useful International CLL Websites
- Patient Power (United States)
- The CLL Society (United States)
- Ellye (France)
- CLL Support (United Kingdom)
A list of CLL related acronyms and abbreviations produced by the CLL Society
Get Connected
Internet Discussion Groups
Living Well with CLL
Living well with CLL? Is it really possible to live well with a disease? Indeed, it is. These links will help people with CLL adjust to their new normal.
How To Adjust To Life With Cancer
Useful advice, although not specific to CLL.
Living With CLL
Patients in the UK speak about living with CLL.
Tips For Daily Life With CLL
13 suggestions for making life with CLL easier.
Taking Care Of Your Mental Health
How to reduce feelings of anxiety and feel more in control when living with CLL.
CLL Patient Stories
Patients in the USA speak about managing emotions, communication with loved ones and taking an active role in managing your care.
Living with Compromised Immunity
CLL patients are particularly vulnerable to infections of all kinds because the disease weakens their immune system. CLL is a cancer if the B-cell lymphocytes, a type of white blood cell that is a key component of the human immune system. As a result, the B-cells become less effective in fighting infections. These links will help CLL patients manage the risk of infection.
Tips To Live Better While Being Immunocompromised
What to do to avoid possible sources of infection and boost your overall health.
Vaccine Efficacy In Patients With CLL
A discussion of studies of vaccine responses in CLL patients.
Vaccinations In CLL
Review of available vaccines and their suitability for CLL patients.
Dealing with 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.
CLL-Related Fatigue
An overview of the diagnosis and treatment of fatigue.
How To Manage Fatigue With CLL
The symptoms and possible causes of fatigue and how you can manage it.
Coping With Cancer Related Fatigue
Steps to combat fatigue and tips to regain control of your life.
A Canadian Website Wholly Devoted To Managing Cancer Fatigue
Discover the strategies that will help you deal with cancer fatigue.
Managing Anxiety And 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.
CLL And Stress
7 Ways to Manage Stress with CLL.
Emotional, Mental Health, And Mood Changes
Dealing with anxiety, depression and distress.
Emotional Wellbeing Exercises Based On Acceptance And Commitment Therapy
An effective psychological approach for helping people manage the worry, anxiety and stress associated with long term physical health conditions.
Coping With Fear, Anxiety And Stress
How to adapt to your new reality.
Understanding Blood Test Results
CLL patients undergo regular blood tests to monitor the evolution of their disease. The rate at which a patient’s absolute lymphocyte count increases as well as the level of hemoglobin and platelets are some of the indicators that are used to determine if treatment is necessary. However, do not read too much into the results of one test. What is important is the trend over time, from one blood test to another, in
the context of other symptoms. Doctors treat people, not blood test values.
The Components of the Blood
Explains the components of blood that are measured in a blood test.
An Introduction to Blood Tests
An introduction to the blood tests and what abnormal counts might indicate.
The Complete Blood Count
Explains what is measured in a complete blood count (CBC) and how to interpret the results.
Immunoglobulins
An overview of the types of immunoglobulins and what the test results might mean.
Keeping Track of Lab Test Results
An easy to use tool to track your blood and other test results.
Signs of CLL Progression
Since the advent of regular blood testing, CLL has often been diagnosed before a patient feels any physical symptoms. These only begin to appear as the disease evolves through time. These links provide information on what to expect as the symptoms of CLL appear over time as well as the imperfect tools used to predict the evolution of the disease in an individual patient.
Disease progression of CLL
An overview of the symptoms of CLL.
Symptoms of CLL
A more detailed description of the symptoms of CLL.
Watch and Wait: Good News for Patients?
There are many benefits of waiting until CLL progresses before treating it.
Prognostic Factors in CLL
This article describes some of the genetic features of CLL, such as Del (17p) and IGHV mutation status, and how these are used to characterize a patients individual CLL.
Decision to Treat
The decision to initiate treatment depends on the overall state of the patient and the progression of the disease. These links explain what goes into making the decision, for both the initial treatment and further treatments should the CLL return.
Treatment Indications
The signs and symptoms of progressive disease used to evaluate whether treatment should be initiated.
When to Watch and Wait and When to Start Treatment
A review of the reasons to initiate treatment. The overall state of the patient needs to be considered, not just the blood counts.
Guidelines for Relapsed/Refractory CLL
A discussion of when to restart treatment for patients whose CLL has returned after previous treatment starting at 3:30 in the video and the 6th paragraph of the transcript.
Testing
Tests serve two purposes for CLL: Firstly to diagnose the disease; secondly to determine the most appropriate treatment. It is important to understand the specific type of CLL that you have in order to make the right choice of treatment.
Testing for CLL
These three websites provide an overview of the types of tests that are done to diagnose and treat CLL.
Test Before you Treat
The ability of some types of CLL to resist certain therapies and their sensitivity to others is critical in tailoring the appropriate therapy.
FISH and Flow Cytometry tests
A discussion of the two most common tests: FISH and flow cytometry.
Bone Marrow Biopsy
The bone marrow biopsy is still used, but less than previously.
CT Scans
A panel of doctors critique the use of CT scans for CLL.
Lymph nodes biopsy
This biopsy is used for SLL, where the CLL cells are in the lymph nodes and not in the blood.
First Line Treatment Options
When the watch and wait period is over and the decision to treat has been made, the next step is to choose the most appropriate treatment. These links provide information on different treatments that are available.
Overview of CLL Treatment Options
A flow chart of the treatment options and possible outcomes.
First Line Treatment Options
Overview of first-line treatment options and the factors that influence the choice of treatment.
Targeted Therapies for CLL
Basic information on commonly used targeted therapies.
Chemotherapy of CLL
Basic information on commonly used chemotherapy treatments.
Specific Treatment Information
A database where comprehensive information on CLL treatments can be found.
Managing the Side Effects of Treatment
Chemotherapy drugs most often lead to side effects, but targeted therapies and immunotherapy can cause side effects as well.
Relapsed Treatment Options
When CLL comes back, it is called a relapse. Immediate treatment may not be necessary if the CLL develops slowly. The objective is to keep the CLL under control and to be able to live with the symptoms. CLL is not usually curable but treatment can control it.
Treatment When CLL Comes Back
An overview of treatment options
Optimizing Treatment of Patients With Relapsed or Refractory CLL
Chemotherapy-free treatment approaches for patients whose CLL has come back after a previous treatment.
Stem Cell Transplant
While not often used for CLL, stem cell transplants can be an option for certain patients.
CAR-T Therapy
What is CAR-T, how it works and its prospects as a treatment.
A CLL patient describes her experience with CAR-T
Follow-up After Treatment
Your treatment may be successful, but that is not the end of the story. Regular follow-up visits to the doctor for ongoing monitoring of your CLL is the norm. Treatment side effects also need to be managed, not to mention the fear of cancer recurrence. These links will help you in this phase of your CLL journey.
Follow-up After Treatment for CLL
What to do between and during follow-up appointments with your doctor.
Coping with the Fear of Recurrence
Good advice on dealing with the fear that CLL returns after treatment.
Survivorship Plan
Plan how you will manage your health care after treatment.
Treatment Access in Canada
In Canada, each province and territory has its own health system and makes its own decision on the treatments it will provide, including those for CLL. Our friends at Lymphoma Canada have compiled a table summarizing the treatments available in each province and territory for both first treatment of CLL (front line therapy) and subsequent treatments for CLL (Therapy for Relapsed/Refractory CLL).
Navigating the Health-Care System
Canadians may be very grateful for their healthcare system but we sometimes feel lost in an incomprehensible maze. These links will help you better navigate the health care system and know your rights as a patient.
The How To Health Guide (English & French)
The “How To” Health Guide was developed to assist patients, caregivers, friends and families in managing information about the Canadian health care system, which can often be challenging to navigate.
Government Programs for Cancer Patients
On this page you will find links to cancer related support programs offered in 7 provinces and the 3 territories.
Drug Access Navigators
A webinar on the role of drug access navigators (DAN). An Ontario focus but also relevant to provinces who have DANs : BC, Alberta, Quebec and the Atlantic provinces.
Getting a Second Opinion
Asking for a Second Opinion
How to decide whether you should get a second opinion and how to obtain one.
MacMillan Cancer Support
From the United Kingdom, reasons to ask for a second opinion, the advantages and disadvantages of doing so and tips on how to prepare for a second opinion appointment.
Talking With Your Doctor
The most important conversations we have about our CLL are with our doctor, and yet they may be some of the most intimdating and difficult. These links will help you make the best use of the limited time you have with your doctor.
Talking to your healthcare professional (English & French)
This page provides advice on how to get the most out of your appointments with your doctor.
Treatment Decision Guide
This Guide will help you ask clear and focused questions regarding treatment of people on your healthcare team, and get answers from them.
8 Questions to Ask Your Doctor About CLL
Get the information you need about staging, treatment and second opinions.
Taking on CLL Together
A Guide to Discussing CLL With Your Team of Healthcare Professionals.
Getting Maximum Benefit from Doctor Appointments
How to make the best use of the time spent with your healthcare team.
Preparing for Doctors Appointments
Four ways you can be prepared at your next doctor appointment, especially when seeing a new physician.
Low Blood Cell Counts
Both CLL and its treatment reduce the number of cells in our blood: red cells, different types of white cells and platelets. Insufficient quantities of each of these blood cells can lead to serious consequences.
Managing Low Blood Cell Counts
Four conditions with low blood cell counts, their symptoms and treatment.
Blood Transfusions
How blood transfusions can be used to increase the levels of blood cells that are too low.
Intravenous Immunoglobulin (IVIG) Therapy
What to know about IVIG, which is given to compensate for a deficiency in antibodies called immunoglobulins which protect against infections.
Subcutaneous Immunoglobulin (SCIG) Therapy
A comprehensive guide to SCIG, which is taken at home instead of at a hospital as is the case with IVIG.
Repeated Infections
The links in this section will help CLL patients prevent and manage infections, the main risks that come with an immune system weakened by CLL. See also the section on low blood counts.
Repeated Infections
The major symptoms of infections and what to do about them.
Reducing Your Risk of Infection
The signs of infection and what to do about when they appear
Understanding the Immune System
Understanding more about your immune system as a lymphoma or CLL patient will help you to learn the risks of your blood cancer and better prepare against them.
Secondary Cancers
A recent study found that patients with CLL in the United States had a 20% higher risk of developing a new cancer when compared to the general population. These links will inform you about these risks and how to look out for them.
Secondary Malignancies are a Challenge With CLL
A doctor discusses the importance of watching out for the signs of secondary cancers and other diseases in people with CLL
Understanding the Importance of Screening for Skin Cancer
This article deals with skin cancer screening, prevention and self monitoring.
Richter’s Transformation (aka Richter’s Syndrome)
These two articles deal with the transformation of CLL into an aggressive lymphoma. It is a rare but dangerous occurrence, although it can be cured in some patients.
Coping With Financial Challenges
Loss of income can be an issue when faced with a serious illness. These websites provide information on financial support programs as well as tools and resources on how to cope with financial challenges.
The Cost of Illness
A comprehensive look at how to manage the key financial challenges due to illness, with a Quebec focus.
Canadian Financial Assistance Programs
A listing of government financial assistance programs by province as well as other sources
Financial Programs for Cancer Patients and Caregivers in Ontario
Financial support programs available in Canada and Ontario.
Financial Assistance in British Columbia
When you need to stop working and are having trouble affording the medical and non-medical costs that come with having cancer.
Financial Assistance in Nova Scotia
Financial assistance to eligible Nova Scotian cancer patients.
Dealing With Cancer at Home and at Work
When and how to talk about their diagnosis at home and at work is a delicate matter. These web links will help you determine the right time and find the right words to have these difficult but necessary conversations.
Cancer and Work
The Cancer and Work website was designed to address the unique needs of cancer survivors with returning, remaining, changing work or looking for work after a diagnosis of cancer.
How to Explain Your Cancer Diagnosis to Loved Ones
Finding the right words when you talk about your cancer to your partner, children, friends, coworkers, and employer. There is a section for caregivers as well.
How Cancer Patients Can Share Information About Their Condition
This article may help cancer patients of different ages take control of conversations about cancer and share information about their condition with their children, friends, and peers.
Talking About Cancer
These tips can give you some ideas on talking about cancer, depending on your relationship with each person.
Talking to Children When a Loved One Has Cancer
Talking to a child about a family member’s cancer isn’t easy, but it is necessary. Good communication with your children helps everyone in the family cope with whatever changes lie ahead.
Resources for Caregivers and Helpers
Caregivers are essential partners on the CLL journey. These web links provide information, tools and resources to assist those who take on this crucial role.
A Directory of Organizations Supporting Caregivers
A listing of caregiving organizations across the Canada by province. They are sources of information, tools and resources to support and empower caregivers in their role.
Learning to be a Caregiver
Practical advice on all aspects of being a caregiver to blood cancer patients.
Helping someone
Finding out that someone you know has cancer often comes as a shock. What should you say? What should you do? How should you act?