Patient-friendly summary of ELN Guidelines now available in eight languages

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Patient-friendly summary of ELN Guidelines now available in eight languages

Last Updated: Friday, 09 November 2012 16:28 | Print

While treatment guidelines and recommendations are recognised as being the standard of care by haematologists, they can be difficult for patients to understand. To improve the information available to patients, an international CML workgroup of patient organisations and experts have developed a patient-friendly summary of recommendations for CML management. Thanks to a great community effort, the summary is now available in seven languages: English, French, Spanish, German, Italian, Macedonian, Polish and Serbian! The summary aims to help patients to better understand CML management and communicate with their doctors regarding treatment and diagnostics. The original recommendations for physicians were published by CML experts on behalf of the European LeukemiaNet (ELN) in the Journal of Clinical Oncology in 2009. Read the summary here.

EBMT Nurses Group launches nurses CML education programme

Last Updated: Thursday, 27 February 2014 12:04 | Print

ebmt-learningprogramme The Chronic Myeloid Leukaemia Learning Programme, devised by the European Group for Blood and Marrow Transplantation (EBMT) Nurses Group, represents the first specialist Chronic Myeloid Leukaemia (CML) education programme that has been developed in Europe especially for nurses. The programme, which will be launched during the opening ceremony of the annual meeting of the European Group for Blood and Marrow Transplantation (EBMT), to be held in Geneva, Switzerland, 1-4 April, 2012, has been designed to help nurses and other allied health care professionals through the rapidly evolving CML treatment landscape and enable them to deliver optimal care to patients.

>> The programme (PPT slides) is available for download here <<<

CML Horizons 2012: Learn. Share. Grow. 11-13 May 2012, Munich, Germany

Last Updated: Friday, 09 November 2012 16:28 | Print

cml-horizons-2012-150px The 9th "New Horizons In Treating Cancer Conference", held in Amsterdam in May 2011, was a great success. 137 patient representatives (97 CML, 40 GIST) from 48 countries participated in this meeting. New Horizons has been instrumental in educating patient advocates, building patient groups' capacity, implementing advocacy initiatives. "CML Horizons 2012", held 11-13 May 2012, is now a fully community-run and multi-sponsored conference, run by the CML Advocates Network. An exciting programme has been defined by a global steering committee consisting of CML patient advocates from North America, Latin America, Asia, Europe, Middle East and Africa. Registration has started now - please send us an email if you are a CML patient group that has not received an invitation!

Patient-friendly summary of ELN Guidelines now available in seven languages

Last Updated: Friday, 09 November 2012 16:28 | Print

While treatment guidelines and recommendations are recognised as being the standard of care by haematologists, they can be difficult for patients to understand. To improve the information available to patients, an international CML workgroup of patient organisations and experts have developed a patient-friendly summary of recommendations for CML management. Thanks to a great community effort, the summary is now available in seven languages: English, French, Spanish, German, Italian, Macedonian and Polish! The summary aims to help patients to better understand CML management and communicate with their doctors regarding treatment and diagnostics. The original recommendations for physicians were published by CML experts on behalf of the European LeukemiaNet (ELN) in the Journal of Clinical Oncology in 2009. See the summary here.

Now 64 patient organisations from 51 countries are members of the CML Advocates Network

Last Updated: Friday, 09 November 2012 16:28 | Print

The "CML Advocates Network", an international platform for patient groups supporting patients and relatives suffering from "Chronic Myeloid Leukaemia" (CML) now connects 64 organisations from 51 countries across all continents. This worldwide network offers support by sharing of best practice, information and advice for CML patient representatives. We are delighted to welcome our newest member "Association of patients with hemoblastoses" from Kazakhstan!

ASH 2011: Key news on CML from a patients' perspective

Last Updated: Friday, 09 November 2012 16:28 | Print

Like every year in December, about 21.000 hematologists and health professionals (as well as a small group of patient advocates) convened at the Annual Meeting of the American Society of Hematology (ASH) to hear latest news from research in leukemias, lymphomas and other blood disorders.

We have attended the scientific CML sessions at ASH 2011 and are now summarizing the most important presentations and posters, complemented by a patients' perspective. This report covers key presentations on Nilotinib, Dasatinib, Bosutinib, Ponatinib, DCC-2036, Imatinib-Interferon combination, STOP studies, as well as some studies on CML and diabetes or fatigue.

(Translations: English - Russian - Hebrew - German - French - Macedonian)

Hematologist

A physician who has specialized in blood diseases, including leukemia ("heme" means "blood" in Greek language)

Bosutinib

Bosutinib (development name SKI-606, trade name Bosulif), a second generation tyrosine kinase inhibitor.

Also called Bosulif|SKI-606|SKI606

Dasatinib

Trade name: Sprycel, development name: BMS-354825, inhibits BCR-ABL and SRC tyrosine kinases. Authorized for marketing in the EU since 2006 for the treatment of CML and Ph+ALL.
Other names: BMS-354825|BMS354825|Sprycel

Nilotinib

Trade name: Tasigna, development name: AMN107, inhibits BCR-ABL tyrosine kinase. Authorized for marketing in the EU since 2007 for the treatment of CML and Ph+ALL.
Other names: |AMN107|Tasigna

Ponatinib

Trade name: Iclusig, development name: AP24534; a third-generation tyrosine kinase inhibitor
Other names: AP24534|Iclusig.

Imatinib

Imatinib, trade name Glivec/Gleevec, development name STI-571, a first-generation BCR-ABL tyrosine kinase inhibition. Authorized for marketing since 2002 for the treatment of CML and Ph-positive ALL.
Other names: Gleevec|Glivec

Chronic

Long-lasting, slowly developping

Blast

An immature white blood cell that normally represents an early phase of the development process of a blood stem cell in the bone marrow

ECOG

Eastern Cooperative Oncology Group Index to classify the quality of life of cancer patients on a scale ranging from 0 (fully active, able to carry on all predisease activities without restriction) to 5 (death).

Also often referred to as ECOG performance status.

Gene

A unit of information present as DNA; a gene usually contains the blueprint for a protein.

CML

Chronic Myeloid Leukemia, also called Chronic Myelogenous Leukemia
A chronic disease of the blood and bone marrow that results from a transformation of a stem cell.

BMT

Bone Marrow Transplant

ASH

American Society of Hematology

CHR

Abbreviation for Complete Hematologic Response. The blood cell count has returned to normal, and tests don’t show any immature white blood cells. Also, the spleen has returned to a normal size if it was enlarged.

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Chronic Myeloid Leukemia

also called: Chronic Myelogeneous Leukemia
A chronic disease of the blood and bone marrow that results from a transformation of a stem cell.

Hematologist

A physician who has specialized in blood diseases, including leukemia ("heme" means "blood" in Greek language)

Chromosome

A chromosome is a structure of DNA that carries the genetic makeup in the nucleus of the cell. Chromosomes contain giant chain molecules of DNA, coiled and folded as aggregates with specific proteins. Chromosomes ensure that during cell division the hereditary information is evenly distributed to the daughter cells. Normal human body cells have 46 chromosomes. Cancer cells can have a different number and/or structure of chromosomes.

Bosutinib

Bosutinib (development name SKI-606, trade name Bosulif), a second generation tyrosine kinase inhibitor.

Also called Bosulif|SKI-606|SKI606

Dasatinib

Trade name: Sprycel, development name: BMS-354825, inhibits BCR-ABL and SRC tyrosine kinases. Authorized for marketing in the EU since 2006 for the treatment of CML and Ph+ALL.
Other names: BMS-354825|BMS354825|Sprycel

Nilotinib

Trade name: Tasigna, development name: AMN107, inhibits BCR-ABL tyrosine kinase. Authorized for marketing in the EU since 2007 for the treatment of CML and Ph+ALL.
Other names: |AMN107|Tasigna

Ponatinib

Trade name: Iclusig, development name: AP24534; a third-generation tyrosine kinase inhibitor
Other names: AP24534|Iclusig.

Imatinib

Imatinib, trade name Glivec/Gleevec, development name STI-571, a first-generation BCR-ABL tyrosine kinase inhibition. Authorized for marketing since 2002 for the treatment of CML and Ph-positive ALL.
Other names: Gleevec|Glivec

Curative

Disappearance of the disease and return to a “normal” healthy state.

Chronic

Long-lasting, slowly developping

Blast

An immature white blood cell that normally represents an early phase of the development process of a blood stem cell in the bone marrow

ECOG

Eastern Cooperative Oncology Group Index to classify the quality of life of cancer patients on a scale ranging from 0 (fully active, able to carry on all predisease activities without restriction) to 5 (death).

Also often referred to as ECOG performance status.

Gene

A unit of information present as DNA; a gene usually contains the blueprint for a protein.

CML

Chronic Myeloid Leukemia, also called Chronic Myelogenous Leukemia
A chronic disease of the blood and bone marrow that results from a transformation of a stem cell.

BMT

Bone Marrow Transplant

ASH

American Society of Hematology

CHR

Abbreviation for Complete Hematologic Response. The blood cell count has returned to normal, and tests don’t show any immature white blood cells. Also, the spleen has returned to a normal size if it was enlarged.

CML Advocates Network

For Chronic Myeloid Leukemia Patient Group Advocates

The Network

Advocacy & Knowledge