New drugs for CML in clinical trials: ASH 2019
Results from ASH: Discontinuation of TKIs in children with CML
TKIs seem to allow most CML patients, including children, to live a normal lifespan under continued treatment. However, the medication’s long-term side effects such as growth impairment and the need to take the drug for the rest of life, are an issue of concern, especially for children. Recent clinical trials in adults have suggested that some CML patients in deep molecular response on TKI therapy may have a chance to discontinue TKI treatment. However, the biology of CML in children may differ from adults with more aggressive presentation, and data of TKI discontinuation in CML children are limited.
Update on stopping CML treatment: Report from the American Society of Hematology Congress 2019
Achieving therapy-free remission (TFR) continues to be amongst the most discussed topics in CML at the moment. At this year’s ASH congress, the first plenary oral session on CML was dedicated to the topic of TFR and there were many posters as well.
Overall, there are no big news in the area of TFR, but research continues intensively. Across all the different studies, about half of all patients that are stopping therapy after years of deep molecular response to TKI (below MR4 / BCR-ABL below 0.01) need to restart treatment. The main open questions remain to predict the individual patients’ likelihood of a successful stop, the need for life-long PCR monitoring to catch potential late recurrences of CML, and whether a second attempt to withdraw therapy is feasible and safe.
The CML Clinical Trials data-base now lists 54 studies worldwide
Our clinical trials registry currently lists 54 studies:
- 32 CML studies actively recruiting patients, including
- 2 paediatric trials
- 7 treatment-free remission trials
- 20 studies that are no longer recruiting
Check here CML Trials Registry
ASH 2019 in Orlando, USA: CML patient advocates information
Just a few days left until the 61st ASH Annual Meeting and Exposition opens its doors on 7th until 10th December in Orlando, USA. We are hoping to see many CML Advocates at #ASH19!
This is the world’s most comprehensive hematology event of the year and it is very important to prepare the meeting as CML patient advocates in order not to miss out on any key session about chronic myeloid leukemia.
Below you can find some key information about CML sessions hoping it will assist you to prepare and outline your days and make the most out of your time whilst at #ASH19.
We are especially proud this year because of the strong presence of the patient advocacy evidence-based with two important posters of the leukemia patient advocacy community:
- The CML Advocates Network Paper “Chronic Myeloid Leukemia Patients’ Views on Psychological Support Throughout the Treatment-Free Remission Journey”
- The Acute Leukemia Advocates Network Paper ”Identifying Differences in the Quality of Life of Patients with Acute Leukemia: A Global Survey”
Click on "Read more" and check what is offered for patient advocates, hematologists and other stakeholders interested in CML at the American Society of Hematology Annual Meeting this year.
TFR results and resources
ASH 2019 ABSTRACT
We are proud to announce that the 61st American Society of Hematology Congress 2019 has selected our abstract "CML Patients’ Views on Psychological Support throughout the Treatment-Free Remission Journey" published online in the November supplemental issue of the prestigious magazine Blood.
To read the full text of the Abstract "CML Patients’ Views on Psychological Support throughout the Treatment-Free Remission Journey", please click on the image below:
CML Horizons 2020 Registration Now Open
Register here - Preliminary Program - Conference fee - Scholarship Application
Call for Poster - Call for Nominations Travel - Visas - Venue & Accommodation - Acknowledgements
Registration is now open - Join us for the 18th “CML Horizons: Learn. Share. Grow" Conference
DATE: 1st to 3rd MAY 2020 - LOCATION: San José, Costa Rica
For the first time, the 18th CML Horizons will be held outside of Europe and will take us to Central America in beautiful Costa Rica.
EHA 2019 Highlights: The CML patient advocates perspective
More than 12,000 hematology professionals from around the world met together in Amsterdam, The Netherlands for the 24th European Hematology Association (EHA) Congress.
This has been the largest EHA Congress ever recorded with a growth of more than a thousand attendees from last year.
Once again, our CML patient advocates team has been participating in this important meeting for leukemia patients as well as for the patient advocacy community.
Our co-founders Jan Geissler, Giora Sharf and Jana Pelouchova as well as our Chair Sarunas Narbutas and several Steering Committee members and CML CAB members as Zack Pemberton-Whiteley or Felice Bombaci, plus our staff members, have been attending and actively participating in many sessions of the Congress.
Know more about what happened at #EHA24 on CML:
CML Advocates Network appoints Denis Costello as its first ever Executive Director.
We’re proud to announce that Denis Costello has recently been appointed as the first Executive Director of the CML Advocates Network, the global umbrella organisation dedicated to empowering patient leaders in Chronic Myeloid Leukemia (CML).
Denis comes to our CML family from EURORDIS, Rare Diseases Europe, where he worked since 2008 as the organisation’s Online Communications Manager.
During that time he has led the launch and operation of RareConnect, a global, multilingual social network for patients and families living with rare diseases (see www.rareconnect.org) which saw him work with over 1000 patient organisations of all sizes and from all over the world who now use the platform to host their online patient communities.
European Society of Medical Oncology Congress, Barcelona, 2019
From 27th September to 1st October, the European Society for Medical Oncology Congress takes place in Barcelona.
The ESMO Congress is the appointment in Europe for clinicians, researchers, patient advocates, journalists and the pharmaceutical industry from all over the world to get together, learn about the latest advances in oncology and translate science into better cancer patient care.
Approximately 30.000 oncology professionals from all around the world will be able to do more for their patients.
Today is World CML Day 2019. Play and Learn, Share, Grow with us!
On the World CML Day 2019, the CML Advocates Network is launching an online QUIZ aimed at educating patients, their relatives and society in general about chronic myeloid leukemia as well as at increasing awareness about this disease.
Click on The 9/22 Quiz, start playing and share your score on social media to join the World CML Day awareness campaign!
