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MY LEUKEAMIA and the SPIRIT 2 TRIAL


CONTENTS
1. THE DIAGNOSIS
2. THE SPIRIT 2 TRIAL
3. MY PROGRESS

1. THE DIAGNOSIS in October 2011.
My daughter Sarah had been telling me that I ought to see the doctor about chest pains I was having when walking any distance and to stop her pestering me I made an appointment.
The doctor said I should attend the Cardiac clinic and arranged blood test.
I had the blood test and later the same day the doctor telephoned me to say that I had an extraordinarily high white blood cell count, 200+, and must attend the heamatology clinic the next day.
I asked what it could be and he said it might be Leukaemia, which was quite a shock.
At the clinic at Wycombe Hospital I learned that it was likely that I had Chronic Myeloid Leukaemia, CML, and that was later confirmed. The good news was that it was now treatable with a drug called Imatinib which blocks the production of the protein in the bone marrow which produces the rogue cancerous white blood cells. Ten years ago the prognosis would be survival of only a few years but with imatinib survival of 8 years or more is 80%.


2. THE SPIRIT 2 TRIAL
I was invited to join a trial called Spirit 2 which is comparing the Imatinib drug which has been in use for some years with another similar drug Dasatinib.
In the study notes it says " the overall aim of the project is to find out if dasatinib is a better treatment than imatinib for the treatment of CML which may give doctors and future patients a choice of treatments".
I decided that it was almost my duty to agree to participate as I was going to be given imatinib free on the NHS to keep me alive and selfishly I thought I might be more closely monitored.
A computer is used to randomly allocate the treatment I would receive, imatinib or dasatinib. I was allocated imatinib, so I would be on the same treatment anyway.
I would have to have more tests during the trial and bone marrow samples which I was quite happy to have. The trial will last 5 years unless something changes in my situation or new information becomes available.
I have since discovered the likely cost of the drug Imatinib, which I receive as "Glivec" manufactured by Novartis, would be around 65 a tablet. That adds up to a staggering 23,725 a year. I understand that the trial cost is shared by the NHS and Cancer research and the manufacturers, but it makes me all the more glad to be a part of the trial hopefully give something in return for having the treatment.

3. MY PROGRESS
I write this on March 12, 2015 so I have survived for 3 years and 4 months and seem to be doing OK. The Imatinib has reduced the blood cancer cells now to almost zero, 0.01%. I have had few side effects, tiredness being the main one, and some problems with cramps if I sit or stay in one position too long. But these might be just my age!
I went for that hospital appointment last a week ago and all my blood results were normal. I seem pretty good for my age so I count myself lucky for that.
Thank you NHS.