iCMLf Knowledge Centre

eLearning for Clinicians, Molecular Biologists, & Pathologists

iCMLf Knowledge Center

 

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CML Diagnosis & Management

 

In this section you will find information related to CML diagnosis and management. We aim to guide you through the journey from your first diagnosis to the continuous monitoring and management of your disease that becomes part of your routine.

Diagnosis

Many people with chronic myeloid leukemia (CML) don't have symptoms when it's diagnosed. The leukemia is often found when their doctor orders blood tests for an unrelated health problem or during a routine check-up. Even when symptoms are present, they're often vague and non-specific.

After therapy has been initiated the careful monitoring of response to treatment is essential to ensure that you are on track to achieve long-term disease control.

Watch an educational video on testing and monitoring

Here is an educational video on testing and monitoring provided by our trusted partner CML Advocates Network that will help you understand what you need to know about diagnostic laboratory testing and disease monitoring. You will hear that most people diagnosed with CML lead full and active lives with little or moderated side effects and achieve long-term treatment remission as long as regular testing and monitoring is followed and medication is taken as prescribed.
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Watch an educational video on PCR testing

We invite you to watch another educational video on PCR testing provided by the Leukemia & Lymphoma Society to learn more about the importance of polymerase chain reaction (PCR) testing and ongoing monitoring of CML. PCR is a very specialised test looking for the BCR-ABL gene that defines leukemia. Regular PCR testing can give an early warning sign if the medication is not working the right way even before anything else, like blood counts, changes.

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Download a PCR primer booklet

For those of you who want to learn more about PCR testing we recommend the QRT-Primer Booklet provided by the CML Support Group UK. This booklet provides an overview of the quantitative Reverse Transcriptase Polymerase Chain Reaction (qRT-PCR) test. This primer provides a useful resource for patients and others with an interest in this important topic and will contribute to the better understanding and interpretation of qRT-PCR results and response to treatment.

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Learn more about the 'MyPCR Campaign'

PCR stands for polymerase chain reaction. It’s a diagnostic and monitoring tool used in CML and other diseases to measure the response to treatment. PCR is one of the most sensitive ways to detect the level of disease in a person with CML. Despite its importance, many people living with CML are not able to properly monitor their treatment due to lack of access to or understanding of PCR technology. My PCR aims to educate and equip people with knowledge and tools for PCR testing.

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Guidelines

A clinical guideline (also called a medical guideline) is a document with the aim of guiding decisions regarding diagnosis, management, and treatment for a specific disease area. A healthcare provider is obliged to know the medical guidelines of his or her profession, and has to decide whether or not to follow the recommendations of a guideline for an individuals treatment. Clinical guidelines identify, summarize and evaluate the highest quality evidence and most current data. Then they define the most important questions related to clinical practice and identify all possible decision options and their outcomes.

Read patient-friendly summaries of clinical guidelines on CML

The CML management recommendations may be difficult for patients to understand. A workgroup of CML patients of the CML Advocates Network, advised by medical experts, has developed a document in lay language to provide CML patients with a simplified summary of the information contained in the ELN Recommendations. We hope this patient-friendly summary of the 2013 ELN guidelines now available in 22 different languages will be a helpful tool for you to discuss CML disease management and treatment choices with your doctor.

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Read NCCN Guidelines for patients

Another resource of information for patients is the NCCN Guidelines for patients written by the National Comprehensive CancerNetwork®. These are based on the guidelines written for doctors and explain which tests and treatments are recommended by experts in CML. The National Comprehensive Cancer Network® (NCCN) is a non-profit alliance of 26 of the world leading Cancer Centres.

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Doctor-Patient Communication

Talking with your doctor is important to make informed decisions about your treatment and disease management.

Find questions to ask your doctor

On the website of Cancer.Net you will find some questions to ask your doctor or other members of your health care team, to help you better understand your diagnosis, treatment plan, and overall care. These suggested questions are a starting point to help you learn more about your care and treatment. You are also encouraged to ask additional questions that are important to you. 

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Find questions for blood test progress updates

The CML Support Group UK provides template questions for early meetings with your treatment team and template questions for blood test progress updates.

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Treatment-free remission

Recent scientific findings demonstrate that some CML patients who have achieved stable deep molecular response can safely stop their therapy without relapsing. Hence, the concept of treatment-free remission (TFR) is currently being wideley discussed among the CML community. To keep you up to date, this section provides you with patient-friendly information on TFR. 

Visit the TFR 4 CML Patients website

The TFR 4 CML patients site run by the CML Advocates Network has put together everything you need to know about TFR. You'll find information on TFR recommendations and an online survey conducted by the CML Advocates Network as well as a summary of key scientific publications on TFR. 

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