Today is the 10 year anniversary of my diagnosis of ph+CML in late chronic/accelerated stage.
I have no need to tell any of you what a diagnosis of CML feels like and therefore what this anniversary means to me and my family.
I was told I had approximately 12 months to live if I did not have a stem cell transplant - this was the pre-Glivec era.
It was because of the internet that the initial prognosis proved to be a little more 'elastic'. In searching to understand my disease and make some sense of what was happening to me, I joined the CML listserve on ACOR.org. It was here that I 'met' Peter Rowbotham who's wife Rita had joined the phase 1 trial of STI 571 (imatinib) under the care of Brian Druker MD at OHSU in Portland Oregon.
Peter urged me to ask my doctor (Prof. John Goldman) if he would support my enrollment on the phase 11 trial which Dr. Druker was about to open. After some careful consideration of my case, it was decided that I could go to Portland and I enrolled in the trial. I will be eternally grateful to Peter and his generosity in sharing crucial information with me and others during those early years.
We truly are living through transformational times, and I am acutely aware of how fortunate I have been. This is why I continue to work on behalf of CML patients and why I am committed to patient advocacy in general.
I have almost finished writing up the summary of the UK seminar and would ask for your patience. There was a lot of information and I would like thank Janet Perry who kindly shared her extensive notes with me.
I hope to have this finished and uploaded onto the site over the next week.
However, I am also involved in a conference for rare cancer patients and will be attending a press briefing at the EU parliament next week, so it is a challenge for me to find time. The recommendations from this conference which ask for an improvement the care of rare cancer patients in Europe is important and I hope will be accepted. Patients access to therapy and new drugs is important to specific disease groups like ours, and we need to form coalitions with other patient groups if we are to achieve any sort of equity with other more common cancers. Rare cancers like CML do not have a very high public profile. We must continue to work to change this.
I hope over the next few years we will be closer to understanding the complexities residual disease in CML and therefore closer to a cure.
Thanks to all of you who attended the UK Seminar who took the time to introduce yourselves to me. It helps to know that the work I and other advocates do is of some help and comfort to individual patients.
So on this 10 anniversary, I would like to wish every one of you a long a happy life.
Sandy
