Patient-friendly summary of the ELN CML Treatment Recommendations now available in 15 languages

ELN2013summary-coverThe CML Advocates Network, advised by medical experts, has developed a lay-friendly summary of the ELN Expert Treatment recommendations for CML.

It is now available in 15 languages: English, Arabic, Bulgarian, Chinese (traditional and simplified), Dutch, French, German, Hebrew, Italian, Polish, Portuguese, Russian, Spanish and Turkish (new: Turkish and Chinese).

See our ELN Summary here: http://www.cmladvocates.net/cmlsummary

 

ASH 2014 Report #2: New data on Ponatinib – most potent, but overdosed?

EPIC-Bestresponse[Translations: German]

Ponatinib, the first 3rd generation Tyrosine Kinase Inhibitor and potentially one of the most potent CML drugs on the market, has gone through a roller coaster ride over the past two years.

The patient community has been following the development of ponatinib since it the first data of a phase I study with the so-called AP24534, today called ponatinib/Iclusig, was presented at ASH 2009. Given it is the only drug effective against T315I and some other multi-resistant mutations, and seems to work very effectively in many patients even after failure of imatinib, dasatinib and nilotinib, the drug has deserved a lot of attention. Based on a rough regulatory ride due to new concerns on the side effect profile, the CML community was now curious to hear the new data on ponatinib presented at ASH 2014. Of special interest were updates on side effects and risk factors, and whether those trial participants who had to reduce their ponatinib doses were still responding well to the drug, but with better tolerability.

Read more ...

A review of 2014 in the CML Advocates Network...


CML Advocates Network-logo-rectangleA busy year is coming to its end, and it´s a good time to reflect on our achievements and activities of the past twelve months. To name just a few:
  • An exciting and enriching "CML Horizons" Conference in Belgrade in May 2014.
  • World CML Day on 22 September 2014 that demonstrated the unity of the global community with more than 30 worldwide activities.
  • Publication of the International CML Book "Faces of Courage and Hope", published just in time for World CML Day 2014.
  • Our inofficial Clinical Trial Registry that has significantly expanded over the past year. Currently the database lists 19 ongoing CML trials.
  • Our CML Generics Declaration that a group of CML patient advocates agreed on in May 2014, complemented by a "knowledge base" on CML generics.
  • Launch of a number of new educational videos for patients, aimed to highlight the subjects of "adherence", "side effects" and "testing and monitoring".
  • Publication of a patient-friendly summary of the European LeukemiaNet recommendations (2013) for the management of Chronic Myeloid Leukemia.
  • Publication of a summary of the patient advocacy sessions at the EHA congres in June 2014.
  • Publication of two first reports of the ASH meeting in December 2014.

 

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ASH-Report #1: Stopping CML treatment for therapy-free remission

EUROSKI[Translations: German - Russian]

Treatment-free remission, or stopping treatment in stable long-term deep molecular remission, has probably been the most reported topic at this year’s ASH.

The European Stop Tyrosine Kinase Inhibitor study (EURO-SKI), being the largest ongoing STOP study, has just completed recruitment of 700 participants. An interim analysis of the first 200 patients from 8 European countries with a follow-up of minimum 12 months was now presented. The study aims to define prognostic markers to increase the rate of patients in durable deep molecular response after stopping TKI treatment, evaluation of molecular monitoring procedures, and the assessment of quality of life.

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ASH 2014 in San Francisco: Optimizing CML therapy

[ASH2014introTranslations: Russian - German]

The annual ASH meeting is the most important event of the year for researchers in the field of hematology. With more than 30.000 health professionals attending the congress, it serves as the leading platform to present and discuss the latest research results as well as to meet up and discuss collaborative efforts. Some might also call it collective sleep deprivation, with meetings usually starting before sunrise and ending with PowerPoint-supported evening receptions.

Other than at the EHA congress, the ASH meeting unfortunately does not feature a patient advocacy track in the scientific programme – or at least free admission for patient advocates, which results in patient advocates only making up around 0,1% of the total audience. Roughly 35 patient advocates from all continents and across disease areas attended this 56th ASH congress in San Francisco. Amongst them, Giora Sharf and Jan Geissler are reporting some of the latest news on CML presented in presentations and on posters.

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Patient-friendly summary of the ELN CML Treatment Recommendations now available in 15 languages

ELN2013summary-coverThe CML Advocates Network, advised by medical experts, has developed a lay-friendly summary of the ELN Expert Treatment recommendations for CML.

It is now available in 16 languages: English, Arabic, Bulgarian, Chinese (traditional and simplified), Dutch, French, German, Hebrew, Italian, Polish, Portuguese, Russian, Spanish and Turkish (new: Turkish and Chinese).

See our ELN Summary here: http://www.cmladvocates.net/cmlsummary

 

The CML Advocates Network's Clinical Trial Registry now lists six new studies

About a year ago, the CML Advocates Network set up an inofficial clinical trial registry to give CML patients easy access to information on ongoing CML trials: http://www.cmladvocates.net/cmltrials. With the continued input from patients, academic institutions and pharmaceutical companies, who keep submitting up-to-date trial information, the registry has grown and turned into a great source of information. The trial registry contains not only a short summary of the trial, but also (if available) the informed consent documents for patients, a list of the study centers, as well as weblinks to clinicaltrials.gov or the EU Clinical Trials Register. Since the beginning of September 2014 alone, six new studies have been added, and 20 clinical trials are listed in total.

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Now available: Our patient-friendly summary of the ELN CML Treatment Recommendations!

ELN2013summaryThe CML Advocates Network has published the updated patient-friendly summary of the "2013 European LeukemiaNet recommendations for the management of CML. It is made available in English, French, Italian, German, Hebrew, Russian, Polish, Spanish, Portuguese, Arabic and Serbian (as a start). More languages might follow.
 
Our patient-friendly summary of the 2009 version of the European LeukemiaNET Treatment Recommendations on CML has been picked up very strongly by the community, demonstrating the demand of patients to understand the expert recommendations: Our web versions of the patient-friendly summary were viewed 8.300 times in Spanish, 8.600 times in Italian, 14.500 times in French, 17.100 times in English since 2011 - not counting the PDF downloads from our website and printed versions that were disseminated at meetings. The summaries were not only used by patients, but also by physicians as a tool to explain treatment milestones and monitoring in a more understandable way. With great support from the community, our last summary was actually made available in 11 languages.

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Shipment of magnetic pins for World CML Day 2014 pins has ended!

WCMLD-PinsThis is to inform you that no more magnetic pins for World CML Day 2014 can be ordered, as we are out of stock! Since three weeks, a total of 35.000 buttons of "World CML Day" are travelling all across the world, and some of them are still on their way! Thanks to you all for your orders! We look forward to receiving your pictures!

World CML Day on 22 September is approaching... Pins are travelling!

WCMLD-PinsAbout 35.000 buttons of "World CML Day" are travelling these days across the world, to be with CML advocacy organisations and healthcare professionals on 22 Sept (9/22). This photo shows the different options we looked at: the one on the bottom left is the magnetic button produced this year, the little one in the middle is our 2013 pin (the bigger ones were samples we also tested)! Excited to see the photos when people all around the world will wear the pins on 22 September!

To our member organisations - see our news here how to get the pins and books, if you have not ordered them already!

Now also in Spanish: CML patients' declaration on quality and consistency in use of generics

An important topic of increasing attention discussed between CML patients and health professionals is the introduction of generics in CML treatment. Patients welcome that generics may improve patient access to more affordable therapies in many countries. However, patients also raise concerns about impact on their cancer when switched between different products for non-medical reasons, if their equivalence in terms of quality and efficacy is uncertain.

In May 2014, CML patient groups published a declaration calling governments, health authorities and healthcare professionals to minimize potential uncertainties and risks for patients with five measures. Thanks to our friends at Fundación Colombiana de Leucemia y Linfoma and the Max Foundation, a Spanish translation of the declaration is now available. See also our Generics knowledge base which is continuously updated.

Getting ready for World CML Day 2014!

WCMLD 2013 0922Group by group, advocate by advocate, and survivor by survivor, World CML Day is raising awareness about the needs of people living with CML around the world through numerous simultaneous events being organized by leukemia patient associations on all continents on 22nd of September. Visit our World CML Day Section on this website to learn more about World CML Day about key initiatives planned for this year´s Sept 22! From today, you can also place your orders for our International CML Book („Faces of courage and hope --
16 inspirational journeys of people living with Chronic Myeloid Leukaemia“) and the new "World CML Day magnetic pins". We look forward to a wonderful World CML Day 2014 and everybody´s active contribution!

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