News story

Thank you to everyone who completed our recent survey investigating App use and functionality in the setting of CML.

We were overwhelmed by the number of responses and our final total of 286 (from every corner of the globe!) was far greater than we had expected.

Our key findings were that just under a quarter of respondents were aware that Apps are available to support patients in managing their CML - however, only 1 in 9 respondents had actually used an App.

https://www.nature.com/articles/s41375-019-0699-y

An investigation into the use of app technology in patients with CML.

Jorge Cortes sees the future of CML care in earlier treatments. “I think that a lot of the focus now is to see if we should do some interventions early on to try to optimize the number of patients who get to the deepest molecular responses and that would, at some point, be eligible for treatment discontinuation,” he said in an interview with Targeted Oncology.

Read the full article. 

Chronic Myeloid Leukaemia Patient Day

Saturday, 21st September 2019, Leeds

Agenda

9.30 – 10.00  Registration

CML and its Treatment

10.00 – 10.05  Introduction and Welcome 

10.05 – 10.20  Chronic myeloid leukaemia – what is it? Dr Kate Rothwell

Videos and PDF copies of presentations from the CML Advocates conference, 2019, are now available and can be found by following the link below:

https://www.cmladvocates.net/cmlhorizons/cml-horizons-2019/conference-information

Below is an overview of the available materials, but you will find that and more by following the link above.

Presentations, Video streams and Photo Gallery are available now!

CML Patient Group at King's College on 24th July 2019.

Details below.

poster_july_2019.pdf

CML Horizons Conference Lisbon Portugal
May 17th - 19th 2019

Nigel Deekes, as the CML Support Group’s conference delegate, describes  highlights from this year’s conference.

Up to 80% of CML patients using tyrosine kinase inhibitors (TKIs) reports muscle complaints. These muscle complaints are strongly related to the presence of fatigue and contributes to both diminished disease control and impaired quality of life. Although the mechanism by which TKIs cause muscle complaints is poorly understood, mitochondrial dysfunction has been suggested to play a pivotal role in TKI-induced cardiac muscle toxicity.

For further reading, follow the link below:

The World Health Organisation (WHO) recently released an alert about batches of ponatinib (Iclusig) that are not authentic.

The technical description of drugs that are not authentic is that they are “Falsified Medicines”.

This situation has similarities with counterfeit versions of well known brands of clothing, trainers or perfumes you sometimes see for sale in street markets at prices way below those for the same products advertised for sale by reputable high street retailers.