My CML Journey
By Royston Hogan, Singapore
In early December 2001, I was at a meeting at work when I felt a strange pain in my right shin. It
was unlike any pain I had known previously, it seemed to originate not from the calf muscle but
actually in the shin bone. Putting it down to a strange one-off event I put it out of my mind. Then I
began to have sharp left shoulder pain, becoming more persistent and intense as the month wore on.
This was soon accompanied by increasing fatigue, I used to fall asleep in the chair while watching
TV at 6pm in the evening! Then my appetite began to fall off as I seemed to always have a feeling
of my stomach already being full. Around the middle of the month, I was having difficulty sleeping,
as I would wake up drenched in sweat. Increasingly, there would be instances of pain, in my left
hand side, just below the rib-cage.
Finally, just after Christmas, Anjana persuaded me to see an arthritis specialist, as this seemed the
likely cause of the shoulder pain. Off I went, and the specialist told me no, I did not have arthritis,
but he observed that my spleen was enlarged, and suggested perhaps some form of blood disorder,
and mentioned leukemia as a possibility. NO WAY!!! Well, Anjana suggested going to our GP, and
taking her opinion. So a week later, went to the GP, who suggested doing a full blood work-up.
Also a uric acid test during this time showed above normal levels which convinced us it would turn
out to be some form of arthritis, perhaps rheumatoid arthritis.
Jan 6, 2002 was a pretty nice day to all appearances. Anjana called me at work at 4.25pm, and I
could immediately hear the strain in her voice, as she said that the blood test results were in, and it
was not too good. So I have RA after all, I thought, and then I heard the word Leukemia.
NOOO!!!! It could not be, I had always been healthy, fit, did’nt drink or smoke, seldom even
caught a cold. I drove home right away, just wanting to reach Anjana, I guess like a wounded
animal trying to return to its home. We just cried together that dark night, when everything we
dreamed and lived for seemed to suddenly shake and shiver, threatening to collapse. We would cry
together often in the coming months.
We saw the oncologist a week later (he was out of town), was put on Hydrea, and had a BMB
confirming CML. I still remember taking that first Hydrea tablet on a cold, dark morning, and
thinking, well, I guess its no dream, I am actually living this nightmare. I was given the choice of
either a BMT or Interferon therapy, no Gleevec as the doctor said that there was not enough data
available on it (this was back in Jan 2002, relatively early days of the Gleevec era). My chances
with a BMT are really poor, as I have mixed blood and am very unlikely to have a good match. We
went to another hematologist that we have remained with since and are very happy with. I was the
first patient in Singapore, to go on Gleevec without first going on Interferon therapy (thanks all to
Anjana who researched everything, I was just too stunned by everything). At that time, my doctor
told me that he figured Gleevec could give me ten years at least, and that estimation has improved
considerably since those early days. The prospect of a normal lifespan now seems a very real
possibility.
Roy with CMLer, Jeannie from the US Roy with CMLer, Kit from the US Roy with CMLer, Paul from the UK
The prognosis for Gleevec is so encouraging these days that I imagine newly diagnosed patients do
not have to go through the mostly terrifying time at diagnosis that patients in the past had to go
through, with doctors basically telling them that well, time is limited, and let’s hope for the best. I
am very glad for this, but I imagine the shock and trauma still remains, but perhaps lessened in
intensity. In the past, I could not think of diagnosis day, without tears coming to my eyes, and a
flood of emotions threatening to overcome me. But now after nearly 8 years, reliving diagnosis day,
does not bring all those traumatic emotions to the surface, rather just a thoughtful reflection on
stressful and painful events in the past. Maybe that’s the biggest sign that things have really
improved.
Its been over 7 years now on 400mg Gleevec therapy, and I reached MMR two years ago. My last
PCR test, the most sensitive test available, showed no signs of leukemia. I hope my next PCR tests
validate this result. Side-effects are manageable and very tolerable. I owe my life and continued
well-being, physically and emotionally, to my wife, caregiver and best friend, Anjana. She has been
the best caregiver anyone could ever hope for, and has also helped CML patients worldwide through
the various on-line CML support groups and at our hospital. My admiration for her knows no
limits. And I’d also like to thank the Asian CML Support Group, for being a pillar of support and
encouragement. If I had a wish for CMLers around the world, it would be a simple one, that
everyone reach high levels of remission, have minimal side-effects, can access the drugs they need,
live their normal life-spans and maybe someday, a cure is found.
The structure of our lives and dreams that appeared so fragile in first few months post-diagnosis has
grown stronger with time. The first year was very traumatic, and many weekends, Anjana and I
would just try to be together and comfort each other. Mortality was never far from our minds. The
succeeding years have seen a easing of the emotional trauma, with a return to doing more everyday
activities we like. We watch our favorite movies, both on the screen, and at home on DVD. We
catch plays and musicals at the theatres, and in Dec 2004 we visited relatives in India, after 7 years!
2005 marked the year we became heavily involved with Indian patients coming to Singapore for the
BMS drug trials, and a very enriching experience it proved to be. We have made many lasting
friends. There are moments of great joy, when the patients have had good results, but some
heartbreaks too when there are failures. But the friends we have made during this time are lifelong
and a real treasure. 2006 and 2007 have been a further consolidation of this return to normalcy.
So life goes on getting better. This 2009, we enjoyed our first holiday vacation with little thought on
CML. I think there are lessons that having CML enables one to learn. Somehow, there is a
heightened sense of appreciation of things one may never have noticed before. A nice song, a
flower, a kind word, the value of loved ones and friends, all assume a richness not there previously.
Perhaps the awareness of mortality that having CML brings triggers this, but nonetheless, it enriches
life. That is not to say that we may not have lost something, namely the peace of mind that comes
from not having to deal with the therapy and maintenance and monitoring of the disease, and fears
of not responding to therapy or losing response. But there are compensations. And life can still be
full and rich.
Our Singapore CML Group CMLers Bill from Japan and We will always remember My immediate support-
Suresh from Thailand Sanjay from India, who lost Dr. Goh, my comforting
his CML battle, here with lovely hematologist and my wife
wife, Sangita Anjana
2009-Even Anjana is now
relaxed about CML:-)
By Royston Hogan, Singapore
In early December 2001, I was at a meeting at work when I felt a strange pain in my right shin. It
was unlike any pain I had known previously, it seemed to originate not from the calf muscle but
actually in the shin bone. Putting it down to a strange one-off event I put it out of my mind. Then I
began to have sharp left shoulder pain, becoming more persistent and intense as the month wore on.
This was soon accompanied by increasing fatigue, I used to fall asleep in the chair while watching
TV at 6pm in the evening! Then my appetite began to fall off as I seemed to always have a feeling
of my stomach already being full. Around the middle of the month, I was having difficulty sleeping,
as I would wake up drenched in sweat. Increasingly, there would be instances of pain, in my left
hand side, just below the rib-cage.
Finally, just after Christmas, Anjana persuaded me to see an arthritis specialist, as this seemed the
likely cause of the shoulder pain. Off I went, and the specialist told me no, I did not have arthritis,
but he observed that my spleen was enlarged, and suggested perhaps some form of blood disorder,
and mentioned leukemia as a possibility. NO WAY!!! Well, Anjana suggested going to our GP, and
taking her opinion. So a week later, went to the GP, who suggested doing a full blood work-up.
Also a uric acid test during this time showed above normal levels which convinced us it would turn
out to be some form of arthritis, perhaps rheumatoid arthritis.
Jan 6, 2002 was a pretty nice day to all appearances. Anjana called me at work at 4.25pm, and I
could immediately hear the strain in her voice, as she said that the blood test results were in, and it
was not too good. So I have RA after all, I thought, and then I heard the word Leukemia.
NOOO!!!! It could not be, I had always been healthy, fit, did’nt drink or smoke, seldom even
caught a cold. I drove home right away, just wanting to reach Anjana, I guess like a wounded
animal trying to return to its home. We just cried together that dark night, when everything we
dreamed and lived for seemed to suddenly shake and shiver, threatening to collapse. We would cry
together often in the coming months.
We saw the oncologist a week later (he was out of town), was put on Hydrea, and had a BMB
confirming CML. I still remember taking that first Hydrea tablet on a cold, dark morning, and
thinking, well, I guess its no dream, I am actually living this nightmare. I was given the choice of
either a BMT or Interferon therapy, no Gleevec as the doctor said that there was not enough data
available on it (this was back in Jan 2002, relatively early days of the Gleevec era). My chances
with a BMT are really poor, as I have mixed blood and am very unlikely to have a good match. We
went to another hematologist that we have remained with since and are very happy with. I was the
first patient in Singapore, to go on Gleevec without first going on Interferon therapy (thanks all to
Anjana who researched everything, I was just too stunned by everything). At that time, my doctor
told me that he figured Gleevec could give me ten years at least, and that estimation has improved
considerably since those early days. The prospect of a normal lifespan now seems a very real
possibility.
Roy with CMLer, Jeannie from the US Roy with CMLer, Kit from the US Roy with CMLer, Paul from the UK
The prognosis for Gleevec is so encouraging these days that I imagine newly diagnosed patients do
not have to go through the mostly terrifying time at diagnosis that patients in the past had to go
through, with doctors basically telling them that well, time is limited, and let’s hope for the best. I
am very glad for this, but I imagine the shock and trauma still remains, but perhaps lessened in
intensity. In the past, I could not think of diagnosis day, without tears coming to my eyes, and a
flood of emotions threatening to overcome me. But now after nearly 8 years, reliving diagnosis day,
does not bring all those traumatic emotions to the surface, rather just a thoughtful reflection on
stressful and painful events in the past. Maybe that’s the biggest sign that things have really
improved.
Its been over 7 years now on 400mg Gleevec therapy, and I reached MMR two years ago. My last
PCR test, the most sensitive test available, showed no signs of leukemia. I hope my next PCR tests
validate this result. Side-effects are manageable and very tolerable. I owe my life and continued
well-being, physically and emotionally, to my wife, caregiver and best friend, Anjana. She has been
the best caregiver anyone could ever hope for, and has also helped CML patients worldwide through
the various on-line CML support groups and at our hospital. My admiration for her knows no
limits. And I’d also like to thank the Asian CML Support Group, for being a pillar of support and
encouragement. If I had a wish for CMLers around the world, it would be a simple one, that
everyone reach high levels of remission, have minimal side-effects, can access the drugs they need,
live their normal life-spans and maybe someday, a cure is found.
The structure of our lives and dreams that appeared so fragile in first few months post-diagnosis has
grown stronger with time. The first year was very traumatic, and many weekends, Anjana and I
would just try to be together and comfort each other. Mortality was never far from our minds. The
succeeding years have seen a easing of the emotional trauma, with a return to doing more everyday
activities we like. We watch our favorite movies, both on the screen, and at home on DVD. We
catch plays and musicals at the theatres, and in Dec 2004 we visited relatives in India, after 7 years!
2005 marked the year we became heavily involved with Indian patients coming to Singapore for the
BMS drug trials, and a very enriching experience it proved to be. We have made many lasting
friends. There are moments of great joy, when the patients have had good results, but some
heartbreaks too when there are failures. But the friends we have made during this time are lifelong
and a real treasure. 2006 and 2007 have been a further consolidation of this return to normalcy.
So life goes on getting better. This 2009, we enjoyed our first holiday vacation with little thought on
CML. I think there are lessons that having CML enables one to learn. Somehow, there is a
heightened sense of appreciation of things one may never have noticed before. A nice song, a
flower, a kind word, the value of loved ones and friends, all assume a richness not there previously.
Perhaps the awareness of mortality that having CML brings triggers this, but nonetheless, it enriches
life. That is not to say that we may not have lost something, namely the peace of mind that comes
from not having to deal with the therapy and maintenance and monitoring of the disease, and fears
of not responding to therapy or losing response. But there are compensations. And life can still be
full and rich.
Our Singapore CML Group CMLers Bill from Japan and We will always remember My immediate support-
Suresh from Thailand Sanjay from India, who lost Dr. Goh, my comforting
his CML battle, here with lovely hematologist and my wife
wife, Sangita Anjana
2009-Even Anjana is now
relaxed about CML:-)
