See link below for presentations that are available for download. Nigel Deekes kindly agreed to represent CML Support Group at this years meeting and I would like to thank him for taking part on our behalf. A popular session was not surprisingly was the on on TFR... you can find PDFs of Dr. Mauro, Dr. Nagler and Professor Hochhaus ' presentations on the possibilities that TFR present. Pat Elliott, a patient from the US, represented the patient view of TFR in that session.
DESTINY was not talked about at this particular meeting- at least publicly - but we expect Prof. Clark to present data from the first 100 patients enrolled on DESTINY at the upcoming EHA meeting in Vienna this June.
Sandy
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CML Horizons Meeting- Barcelona
Initially may I say once more my thanks for the opportunity to attend conference this year, and to be able to represent CML Support group was especially a privilege. As always The CML Advocates group put together a comprehensive conference. It was humbling to here the difficulties too many countries around the world have in their access not just to treatment with TKI's, but to none availability of PCR testing and even just getting diagnosed, which so many of us take for granted. I must add here that to hear first hand what the MAX foundation and other advocates have managed to achieve in the provision of TKI treatment etc to thousands of patients is outstanding, well done.
The stopping treatment session was the one that most delegates were looking forward to. Undoubtedly, this an exciting time for many patients who have maintained low enough prolonged, stable PCR levels to have the opportunity to enter various stopping trials around the world. It was stressed that this is something that should only be done under compressive medical supervision. To have the clinicians point of view and history of trials so far was excellent, and then to be followed by Pat Elliott's talk of her own journey, and particularly of the stresses and views of patients she had engaged before conference was fascinating, and probably one that is not given enough consideration.
Sandy mentions DESTINY above. I hoped to raise the trail in open forum, but time did not allow. I did speak to the two main speaker independently, and as a patient who is personally on the trial was interested in their views. I look forward to hearing the initial data from Prof. Clarke in a few weeks. From that I have seen from posts here and on another group, together with my personal experience it seems certainly that half dosage which most of us are still on is going well, and I my own view maybe in time will give many, once shown to be prudent at low PCR levels, a real way to lower dose, and so greatly improve their personal side effects.
Additionally there was much discussion of generic Imatinib which over the coming year will come off patient in many countries. The experience of most was very positive where generics are currently available. It was felt that particularly in well regulated countries the efficacy of these drugs will be very good, however it was reaffirmed that patients and advocates must fight to ensure we all have access to the best treatment available.
It seemed to me from the speakers that Ponatinib whilst has had its issues, and the dose of drug levels given to patients, and their comorbidities need to be just right, has a great deal of excitement around it, time will tell.
Nigel