Register now for CML Horizons 2015, 1-3 May 2015, Barcelona, Spain!
We are looking forward to the 13th CML Horizons conference, held in Barcelona / Spain on 1-3 May 2015. The CML Horizons Steering Committee has worked hard to ensure that the conference includes topics of importance to the CML patient community, and provides a unique opportunity for participants to share experiences and best practice. We hope that as a result of this meeting, CML patient groups globally will improve their capacity to meet the needs of their patients, and strengthen their advocacy activities.
Registration is now open for leaders of CML patient organisations.
ASH 2014 Report #2: New data on Ponatinib – most potent, but overdosed?
[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.
A review of 2014 in the CML Advocates Network...
A 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.
ASH-Report #1: Stopping CML treatment for therapy-free remission
[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.
ASH 2014 in San Francisco: Optimizing CML therapy
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Translations: 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.
Patient-friendly summary of the ELN CML Treatment Recommendations now available in 15 languages
The 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
