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ASH 2017 on stopping treatment: Updated data and emerging recommendations for therapy-free remission outside of clinical trials

ASH2017CML1 EUROSKI1As in previous years, stopping TKI treatment was a widely discussed topic at this year's ASH meeting. New data on trials like EURO-SKI, DASFREE and others are underlining the findings of previous trials and are increasing the certainty on the safety of stopping treatment in a very controlled, closely monitored clinical setting. There is still uncertainty about factors that might predict whether a patient can successfully stop treatment or will experience a recurrence of the disease leading to re-starting therapy. There is still no clarity about the underlying biological mechanisms why some patients can stop successfully while others can't.

Ongoing trials like EURO-SKI will provide a lot of answers, but because there is a lot of demand for stopping treatment while there is only a small number of trials that are still recruiting, stopping treatment is happening a lot "out there in the field". As demonstrated by data presented data at the ASCO conference in June 2017, this may lead also to bad clinical practice when the requirements and potential risks are not taken serious. To provide more certainty on the requirements, first official clinical recommendations are emerging, but they are based on early data. We've tried to summarize what we heard and learned at ASH and what current recommendations say.

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CML Education Session at ASH 2017: Stopping treatment, cardiovascular toxicities of CML drugs, and eradicating leukemia stem cells

ASH2017EDU mahonpanelAbout 30.000 people are meeting in Atlanta (and due to snowfall that happens usually once every five years, it currently feels more like Alaska) to discuss latest science in blood diseases. The Education Sessions are a core element of the conference programme, providing a broad overview on key topics in specific diseases. In the CML education session 2017, stopping CML treatment, cardiovascular issues of current TKI treatment, and eradicating CML stem cells were chosen as the “hot topics” this year.

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CML Advocates Network at Eurordis Federations Council 2017

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Our Programme Manager Celia Marín on behalf of the Leukemia Patient Advocates Foundation participated at the “Council of European Rare Disease Federations” held in Paris on 26-27 October 2017 by the Rare Diseases Europe EURORDIS with 26 other patient organisation representatives from different communities such as Myeloma Patients Europe and Lymphoma Coalition.The two-day meeting was full of very informative and interesting sessions, starting with a joint meeting with the Council of National Alliances.

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Treatment-free remission in chronic myeloid leukemia

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Stopping Treatment in CML has now become a standard care with the publication of the NCCN and ESMO guidelines which include stopping treatment outside the context of clinical trials. The ELN recommendations are expected in few months and will relate to this hot topic as well.

At the same time, there are many questions patients have about the process.

In the following video Giora Sharf, the co-founder of CML Advocates Network and a CML patient on TFR for 3.5 years, interviews one of the world CML experts Prof. Giuseppe Saglio from University of Turin Italy, trying to answer some of the concerns CML patients have when thinking about stopping treatment. For example:

 

What is treatment-free remission concept?

What is the longer period of time that a patient has been on TFR?

Who are the patients eligible for TFR?

How many patients have to restart the treatment after TFR and when?

How can the psychological aspects on TFR be overcome?

What is the standard of monitoring a patient on TFR?

To watch to video click here:

 

The CML Advocates Network participating at ESH 2017

esh footerThe 19th Annual John Goodman Conference on Chronic Myeloid Leukemia: Biology and Therapy were held in Estoril, Portugal on12-15 October 2017 organized by the European School of Haematology (ESH).

This event gathers leading scientists in the field of Chronic Myeloid Leukemia treatment including Clinicians as well as Biologists and Medical laboratory technologists.

Although the Programme does not contain specific Patient Advocacy sessions like in other scientific congresses, several patient advocates from different countries have been attending the conference. A number of CML advocates have been participating at this conference and sharing our CML patient's perspective.

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Welcome, Power of CML, Egypt! Now 116 patient organisations from 86 countries in the CML Advocates Network

We are proud to welcome a new member organisation to the CML Advocates Network: Power of CML based in Egypt. The CML Advocates Network now totals at 116 member organisations in 86 countries worldwide! See the list of CML groups in the Network on our world map.

 

 

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