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.
BACKGROUND: All studies of treatment-free remission (TFR) in patients with chronic myeloid leukaemia have discontinued tyrosine kinase inhibitor (TKI) treatment abruptly and have focussed on patients with stable MR4 (BCR-ABL to ABL ratio ≤0·01%). We aimed to examine the effects of gradual treatment withdrawal and whether TFR is feasible for patients with a less deep but stable remission.
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.
BACKGROUND
Latest NCCN guidelines for management of CML include protocols for TKI discontinuation.
Article here:
https://www.onclive.com/conference-coverage/nccn-2019/tki-discontinuatio...
Updated guidelines here:
https://jnccn.org/downloadpdf/journals/jnccn/16/9/article-p1108.pdf
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.
A study is being sponsored by UCL School of Pharmacy in London to look into the acceptability of web-based video consultations for patients who are receiving treatment for CML at University College London Hospital UCLH.
To help with this, we are looking for people with CML to take part in a focus group to help the study team understand if the opinions of UCLH patients are similar to those of the wider CML patient population.
