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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  Logo CML Advocates Network

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.

Patient Access Programs

Learn more about the 'MyPCR Campaign'


MAX LogoFullColorCMYK 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.

CML Diagnosis & Management

On this section you will find all 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 as part of your daily life routine.

Diagnosis

When you suspect suffering from chronic myeloid leukemia and present yourself to your doctor a couple of assessments is needed to confirm your diagnosis and the stage of your disease. Also 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 monitoringLogo CML Advocates Network

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

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. The 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 e.g. changes.

 

 

Download a PCR primer bookletLogo CML Support Group UK

For those of you who want to learn more about PCR testing we recommend to you the QRT-Primer Booklet for download 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.

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 individual 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 CMLLogo CML Advocates Network

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 20 different languages will be a helpful tool for you to discuss CML disease management and treatment choices with your doctor.

 

Read NCCN Guidelines for patientsLogo NCCN

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.

Generics

A generic drug is a pharmaceutical drug that is equivalent to a brand-name product in dosage, strength, route of administration, quality, performance, and intended use. In most cases, generic products become available after the patent protections afforded to a drug's original developer expire. With imatinib patent – a commonly used drug for CML – expiring in many countries over a period from 2013 and 2019 generic versions become available for CML treatment in more and more countries. 

The iCMLf welcomes that generic drugs can help to increase the availability of affordable medicines and to contain health care costs especially in those countries with limited resources like the emerging markets. But the iCMLf also raises concerns over the impact on quality and safety of CML treatment if products are switched for non-medical reason.

 

Learn more about CML genericsLogo CML Advocates Network

If you want to learn more about generic drugs for CML we recommend to you the ‘Resource and knowledge Center on CML generics, copy drugs and substandard drugs’ run by the CML Advocates Network.