Welcome to the CML Advocates Network!
We are a worldwide network of non-profit organisations supporting patients with Chronic Myelogeneous Leukemia (CML) and their relatives. We do this by sharing knowledge and best practice, running joint campaigns, and educating advocates how to build and grow patient organisations. The network is run by volunteers who are CML patients.
EHA Education Session: CML in Blast Crisis – still a poorly understood, difficult to treat condition
Brian Huntly from the Cambridge Institute for medical Research, UK, was presenting about research in CML blast crisis in the CML Education Session at the EHA congress. CML in blast crisis still has a grim outlook. Life expectancy is still poor with 7-11 months, and transplant is required for long-term survival. About 10% of CML patients are still diagnosed in advanced or blast phase, and around 5-10% progress within first 10 years of Imatinib therapy due to persistence and resistance of CML stem cells, so in total around 20% of CML patients are somehow affected by blast crisis.
The biology of CML progression is still poorly understood. BCR-ABL itself seems to be genotoxic and is providing the environment for mutations. Mutational studies are still rare, many conducted with old-fashioned sequencing technologies on a small number of patients, rarely studies with genome sequencing. Collaborating mutations as highly heterogeneous. Potential drugs that ar currently in use are Sorafenib (RAF inhibitor in use in renal and hepatic cancer), PD0325901 (MEK inhibitor in use in lung cancer), GSK343-EZH2, I-BET (Myc inhibitor in use in AML, Myeloma) and Ruxolitinib (JAK1/2 inhibitor). Therefore, potential molecular targets for blast crisis are MYC, EZH2/PRC2, RAS-RAF-MEK-ERK, JAK-STAT which are being investigated.
In summary, CML progression is a rare but still catastrophic disorder which is poorly understood and very difficult to treat. Mouse models are in use to better understand the human disease and the mutational spectrum, and can inform both on biological mechanisms and development of therapies. Some drugs on the aforementioned targets are in early phase clinical testing. However, outlook is still poor so it is of key importance to prevent progression of CML into advanced phases.
-- Jan Geissler, 10 June 2016
Stopping treatment: Presentation about the state of play in stopping in the CML satellite symposium at EHA
Francois-Xavier Mahon was presenting about the current state of play in stopping CML treatment at the EHA Satellite Symposium on CML, hosted by Novartis. Here is a brief summary of Jan attending the session just now.
In terms of what we know about stopping Imatinib, Francois-Xavier Mahon presented the data of the first STIM (STop IMatinib) in France, where about 38% were able to successfully stop treatment without having detectable disease with a median follow-up of 65 months. Similar rates were observed in other STIM studies like STIM2 (50% still undetectable at 24 months), TWISTER (47% still undetectable at 24 months), A-STIM (61% without loss of MMR at 36 months), KID (59% without loss of MMR at 24 months), STOP2G-TKI (57% without loss of MMR at 24 months) and DADI (Dasatinib, 48% without PCR rise above 0,0069%), ENESTop (58% without loss of MMR) and EUROSKI (51% without molecular relapse at 24 months). So depending on therapy re-initiation criteria, across studies there seems to be roughly a 50:50 chance that stopping treatment in deep molecular response is successful.
Welcome, MOHA (Hungary) - now 109 patient organisations from 82 countries in the CML Advocates Network
We hereby proudly welcome a new member organisation in the CML Advocates Network: MOHA based in Budapest / Hungary is our second Hungarian patient organization. The CML Advocates Network now counts a total of 109 member organisations in 82 countries worldwide! See the list of CML groups in the Network on our world map.
Please sign the petition to reconsider India's government decision of levying customs duty on donated CML drug
Please sign this petition run by the Indian patient organisation "Friends of Max", calling on the Indian government to reconsider their government decision of raising significant import taxes on free Glivec donated to Indian CML patients through a patient assistance programme. For the past 13 years, Glivec was provided for free as a donation to CML patients, but now the Indian government may raise import taxes on a hypothetical financial value of the donated Glivec. This threatens the continuation of the free donation of the drug to thousands of CML patients in India. Please sign the petition at Change.com.
Welcome, "MIELOPRO" (Romania) and CML-Armenia (Armenia) - now 108 patient organisations from 82 countries in the CML Advocates Network
We hereby proudly welcome two new member organisations in the CML Advocates Network: 1. "MIELOPRO" - Asociatia Pacientilor cu Neoplazii Mieloproliferative based in Romania and 2. CML-Armenia based in Armenia. The CML Advocates Network now counts a total of 108 member organisations in 82 countries worldwide! See the list of CML groups in the Network on our world map.
Patient-friendly summary of the ELN CML Treatment Recommendations now also in Croatian language - and 19 other languages
It is now available in 20 languages: English, Arabic, Albanian, Azerbaijani, Bulgarian, Chinese (traditional and simplified), Croatian, Danish, Dutch, French, Georgian, German, Hebrew, Italian, Polish, Portuguese, Russian, Serbian, Spanish and Turkish (new: Croatian, a big thank you to Dražen Vincek (president of CML Club in Croatian Leukaemia and Lymphoma Society (HULL)) and his colleagues for translating, reviewing and approving this new version of the lay-friendly summary!
See our ELN Summary here: http://www.cmladvocates.net/cmlsummary
Free EHA congress registrations for representatives of hematology patient organizations: Deadline 3 May 2016!
This year's EHA Congress will be held 9-12 June 2016 in Copenhagen, DK. Thanks to very patient-centric thinking, EHA continues to work closely with the patient community and is again offering a “Patient Advocacy Track” within the scientific program.
As in previous years, EHA is again providing 50 free congress registrations for leaders of hematology patient organizations to give patient advocates the opportunity to attend the EHA congress in Copenhagen. The free registrations are only available to representatives of patient organizations, and EHA is requiring them to attend our capacity building session (planned for Saturday afternoon). The registration allows access to the scientific congress, but will not cover travel or accommodation costs.
Deadline for free registrations is 3 May 2016! There will be no extension of the deadline and no late registrations. EHA, MDS Alliance and CML Advocates Network will do their best to allocate the 50 free registrations fairly amongst organisations and advocates. Please note that registrations are to be confirmed by the EHA office -- the MDS Alliance and CML Advocates Network just collect statements of interest on behalf of the patient community. We will let applicants know as soon as possible.
Welcome, "CML Saudi Group"! Now 106 patient organisations from 81 countries in the CML Advocates Network
We hereby proudly welcome a member organisation in the CML Advocates Network: The "CML Saudi Group", which is a part of the "Saudi Cancer Foundation" based in Saudi Arabia. The CML Advocates Network now counts a total of 106 member organisations in 81 countries worldwide! See the list of CML groups in the Network on our world map.
Welcome, "Taiwan Bone Marrow Transplantation Association" and "CML Busters Family Support Group of California"! Now 105 patient organisations from 80 countries in the CML Advocates Network
We hereby proudly welcome two new members to our network: The "Taiwan Bone Marrow Transplantation Association" based in Taiwan and "CML Busters Family Support Group of California" based in the USA. The CML Advocates Network now counts a total of 105 member organisations in 80 countries worldwide! See the list of CML groups in the Network on our world map.
We are looking forward to the 14th CML Horizons conference, held in Ljubljana / Slovenia on 6-8 May 2016. 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.
Patient-friendly summary of the ELN CML Treatment Recommendations now also in Albanian language - and 18 other languages
It is now available in 19 languages: English, Arabic, Albanian, Azerbaijani, Bulgarian, Chinese (traditional and simplified), Danish, Dutch, French, Georgian, German, Hebrew, Italian, Polish, Portuguese, Russian, Serbian, Spanish and Turkish (new: Albanian, a big thank you to Jeton Lika (Kosovo Association for Support to Chronic Leukaemiae Patients) and Dr Aferdita Ukimeraj (Director of the department for Haematology, University Clinical Centre in Pristina, Kosovo) for translating, reviewing and approving this new version of the lay-friendly summary!
See our ELN Summary here: http://www.cmladvocates.net/cmlsummary
In September 2014, the CML Advocates Network published the international CML Book "Faces of Courage and Hope" an English-language book that illustrates the life of 16 CML patients from 15 countries. The book features wonderful photos and moving interviews. Selected patient stories are now also available in form of animated videos! The animated stories bring to life the emotional impact of CML on patients and their friends and family, in addition to their future hopes and aspirations. Two new story are now available in form of animated videos:
- Living with CML: Carin´s story of courage and hope (English / Swedish)
- Living with CML: Michelly´s story of courage and hope (English / Portuguese)
Here you will find other videos available to date: