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Fourteen Years on

Posted by
14 Feb 2015

Diagnosed in December 2000 and still going.

I was diagnosed in December 2000, just before Christmas. I had been feeling weak and easily tired for months ; a nasty lasting pain in my left side ; subject to niggling infections that persisted too long to be normal but I was running a farm and we had a young family (Edward the youngest was only four months) - I couldn't possibly be ill !
More fool me - the pain brought me to my knees one afternoon in the yard and I had to get back indoors as best as I could.
Only now did I relent to my wife, Elaine's demands and agreed only to be driven to the local Health Centre in Ballymoney (Co Antrim)
I didn't succeed in keeping this "low key" and was sent directly to Coleraine Hospital ten miles away with (I learned later) a massively swollen spleen which they feared would rupture.
(So that is what the pain was! )

It was the next morning when I was surprised to be spoken to (as I lay on my back on morphine) by a Doctor who introduced himself as a Consultant Haematologist. I was initially confused as I had been told I probably/maybe had an infection in my spleen - hence the IV antibiotic drip.
However on admission the previous night to A&E the junior Doctor had told my wife and I that I was showing a WBC of over 120 as well as the huge spleen. What I thought was that this must be in response to the infection - of course.
My wife Elaine is a qualifed nurse (then of 15 years standing) and she knew something was very wrong but she said nothing. In those pre-internet days she went home later to read up her (old) text books which confirmed her fears and I always remember the phrase (which I later read) which defined leukaemia as " an invariably fatal disease."

The consultant - Dr Burnside - told me that morning, out of the blue, that he was "fairly certain I was suffering from a very serious blood condition - a form of Leukaemia."
I was sure that was it. - I was going to die. I would never see my children grow up ( Sarah was 9, Daniel was almost 7, John was 5 and Edward was 4 months)
I was sent two days later to the Royal Victoria Hospital in Belfast where once I was bedded and put on the electrophoresis machine, I saw the slight figure of Dr Mary Frances McMullin at my bedside.
Well she introduced herself as another Consultant Haematologist and she explained this was Chronic Myeloid Leukaemia.
I remember asking her "what is the bottom line?" and she told me from where I was, I could expect an average survival of perhaps two or three years BUT that huge advances were being made in the treatment of CML in the USA (Dr Brian Druker !) and she aimed to get me on a drug trial which was probably my best hope (I am an only child.)
Long story - but in June 2001 Dr McMullin put me on an arm of the PISCES trial which was being run by Dr Steve O'Brien in Newcastle.
This involved a weekly injection of Interferon ( which I found horrible) combined with 200mg per day of a strange substance called STI 571.
This latter chemical miracle is better known now as GLIVEC.

There were only two people in Northern Ireland on PISCES. The other patient was a lovely young lady (and mother of a young family) called Louise C. She did not respond well to the trial drugs and as my Ph +ve levels eventually came down, hers did not. She was however eligible for a BM transplant from one of her brothers and it was decided that was the answer for her.
Dr McMullin persevered, as did I, with this weekly concoction but I eventually was taken off PISCES in October 2001 as I was not getting near completely Ph+ clear.
Dr McMullin then doubled the STI 571 to 400mg per day and after Christmas I achieved complete cytogenic remission !

STI 571 went on to be licensed in the UK as Glivec I think in 2002 (?)

To finish this very long saga , fourteen years later I am still alive and quite well. My friend Louise tragically relapsed a couple of years after her BM donation and she died. That could so easily have been me - had Glivec not become available.

Dr McMullin is now Prof McMullin at Belfast City Hospital and the Queen's University of Belfast. I still attend her Haematology clicnic every two months and I still have to take Glivec every day.

The conclusion to this story is that I do suffer from side effects from Glivec. I have have a persistent feeling of fatigue and I tire very easily, I become breathless on exertion, have stomach upset due to the drug, often feel rather nauseous and I find my sleep patterns are disturbed.

 I empathize completely with other patients who feel that life cannot be "normal" again and how the imposition of taking this drug compomises your day to day life.   I think these thoughts most days.

However when I feel sorry for myself - and believe me I do some days - I only have to think of my friend and co-trialist on Glivec, Louise and all the others who suffered CML and died, before Imatinib became a part of Haematological reality.

We have to be thankful for the huge advances that have been made in the treatment of CML in recent years and hope that similar advances will continue to be made in the future.

That still doesn`t stop me wishing I had never come across IT !



Hi Chris,

Thanks so much for sharing your experiences with us. This takes me right back to my own diagnosis with CML many years ago. I remember well the enlarged spleen and the ridiculously high white blood cell count and just how bad I felt before treatment, although for me it was only with hindsight that I realised just how bad I actually was.

It's fantastic that the trial was such a success for you. Glivec had only just come on to the market when I was diagnosed and I opted for the transplant and there were pros and cons with that. I know that researchers are working on new treatments all time and given just how far they've come in the last 10 years alone since my diagnosis I am sure that advances will continue to be made.

Thanks again for sharing your story and all the best in the future!