coiaward2010

Free EHA congress registrations for CML patient organisations representatives: Deadline 27 February 2018!

ehacongress1

 

Again this year, the European Hematology Association (EHA) is providing around 50 free congress registrations for leaders of hematology patient organisations, to give patient advocates the opportunity to attend the 23rd annual EHA congress which is taking place in Stockholm from June 14-17, 2018.

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Sincere condolences to Kazakhstan CML community

 

 

Our hearts go out to Kazakhstan and members of the Association of Patients with Hemoblastoses and especially to the family of Lyubov Mizinova who has passed away this month.

We have lost a dear friend and valued patient advocate.

Lyubov Mizinova was the President of the long-running organisation in Kazakhstan and our member for many years.

She was a commendable CML advocate who was active in both Kazakhstan and part of the CML Advocates Network many years.

We all are very proud of every single CML patient advocate who dedicates time, resources, skills and love to the CML community worldwide.

We will all miss Lyubov very much and her loss will be felt by the CML community.

Our thoughts and prayers are with Mrs Mizinova's family at this time.

picture Ljubov MizinovaMizinova2 

 
 
 
 
 
 

Very engaged patient advocacy activities at the European Hematology Association’s Annual Congress 2017 in Madrid

EHA MadridThe European Hematology Association’s (EHA) Annual Congress was held in Madrid, Spain on 22-25 June 2017. More than 10.000 hematology professionals from around the world gathered and discussed the latest developments in hematology research and clinical practice. For the last 7 years, EHA together with its EHA Patient Organisations Workgroup, have conducted Patient Advocacy Sessions within the Scientific Programme of the EHA Congress. With its Patient Advocacy Track, EHA Fellowship Programme, Capacity Building Programme for Patient Advocates, the EHA is one of the leading medical societies in terms of patient involvement in its congress. 

EHA presentations available in this article.

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ASCO: US perspective of TKI therapy discontinuation in CML patients

ASCO17 tki discontinuation posterThe 2017 American Society of Clinical Oncology (ASCO) Annual Meeting were taking place June 2–6 in Chicago and our cofounder Jan Geissler has collected all the highlights of this important meeting for chronic myeloid leukemia community.

In the recent past, not only hematologists but also patient groups have expressed their concern that "stopping CML therapy out in the field" may lead to bad practice by doctors not following expert recommendations, and have suggested stopping TKI therapy should only be done in clinical trials.

Of course, especially after NCCN has updated its CML guideline and has given guidance on stopping treatment despite the prematurity of data, we could expect that this would be largely ignored out in the field.

So here is Jan Geissler's shock poster at #ASCO17: The high arts of CML therapy and the sad reality - we need to be grateful for investigators spelling it out so clearly. He is shocked, as his gut feeling about bad practice is now supported by data.

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ASCO Dasatinib in pediatric CML patients report

Asco CML pediatric 1

The 2017 American Society of Clinical Oncology (ASCO) Annual Meeting were taking place June 2–6 in Chicago.

At ASCO, Lia Gore, MD, co-director of the Hematological Malignancies Program at the University of Colorado Cancer Center and pediatric oncologist at Children’s Hospital Colorado, presented exciting data about Dasatinib in pediatric CML patients: CML in children is ultra-rare, making it very difficult to study - CML cases make up only 3% of all leukemias in children.

The data presented here has been submitted to FDA and EMA for the approval in pediatric use, and is quite impressive: The side effect profile seems to be very favourable and the inhibition of bone growth in children on TKIs seems to be less of an issue in Dasatinib than in Imatinib

However, given that administration of medicines in children and being adherent to therapy is often a challenge for young CML patients (and their parents), the availability of Dasatinib also as a powder-based suspension as well as the fact that the drug can be taken without or with food may make life much easier.

The investigators concluded that Dasatinib may be considered as a new standard of care for pediatric CML patients. 

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ASCO CML Education Session 2017

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The 2017 American Society of Clinical Oncology (ASCO) Annual Meeting is taking place June 2–6 in Chicago.

At the CML Education Session, CML expert Dr. Ehab Atallah, MD, associate professor of medicine in the division of hematology and oncology at the Medical College of Wisconsin, has been speaking during an Education Session about discontinuation of tyrosine kinase inhibitors in chronic myeloid leukemia (CML) presenting about the "Promise of stopping TKIs: Is it ready for prime time"?

Even though no new data was presented (see ASH 2016 Report), it has been very interesting to listen to the US perspective.

 

 

 

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Why drugs aren't enough: People living with CML tell it like it is youtube.com/watch?v=PBx5nE… @cmlnet @UHNtwitter.com/i/web/status/1…

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The European Hematology Association annual congress #EHA23 has finished today. More information will be available v… twitter.com/i/web/status/1…

Sunday, 17 June 2018