CML - the early days

[Guest guest]

Hi folks,

It occurs to me that some of the members of this list who were diagnosed

after Gleevec was approved might be interested in hearing about the world of

CML prior to that remarkable date, almost exactly 6 years ago. Anyone want

to share stories - of life on interferon, what the list was like (an

incredibly tight, supportive group, as I recall), losing listmembers who had

had the disease just too long to benefit from Gleevec trials, what it was

like to be in the trials, of contributions from incredible people like

Rowbotham...etc.?

I'll begin. I was diagnosed on October 19, 2000. I'm a physician, so I more

or less diagnosed myself, though not until after several months of symptoms,

and a shameful amount of denial that I could really be sick. None of the

local heme-oncs had even heard of STI-571 (that's what Gleevec/imatinib

mesylate/IM was then called because it was the 571st. Signal Transduction

Inhibitor they tried before they hit the jackpot). The last time I had

really thought about CML was in medical school in the 70's. At that time,

median survival was only 4 years, so for the first week or so after

diagnosis, I assumed I was doomed either to die in a few years, or to having

a transplant, which, given the rates of morbidity and mortality for someone

my age (51 at the time), didn't seem a much happier prospect. When I first

heard of STI-571 it seemed like a miracle - and still does, really. In

early November I had the good fortune to meet Druker, whose excitement

was palpable, and whose optimism rubbed off on me.

Rather than enter one of the STI-571 trials, however, I elected to go on

interferon (IFN) which was then the standard-of-care drug therapy. I took

IFN for 6 months until Gleevec was approved, and it was quite the ride. In

addition to nasty side effects which got worse over time - including extreme

fatigue, hearing loss, mental fuzziness and toward the end, depression - IFN

caused my platelets and white cells to tank several times, putting me at

risk of bleeding and infection, though luckily I managed to avoid both of

these.

Having heard that IM would be approved sometime in May, 2001, I decided to

quit the IFN in late April. On my last day of IFN I headed out for a solo

hike in the wilderness of Canyonlands National Park. Feeling the awful

effects of this drug leave my body while I was out there was one of the

great experiences of my life. By the time I returned, IM had been approved

and the rest was history.

Regards to all,

R

PS - thanks to all of you who wrote letters or signed the petition to

Novartis regarding their patent case in India. The story is ongoing; I'll

update you one of these days.