New to wild ride

[Guest guest]

Dear Peggy,

I suppose you could say I am " old " to the wild ride you referred to, being

both an elder and a long time CML survivor. I cannot answer your questions on

how the other mothers feel, but I an advise you that everyone goes into shock

when they are diagnosed, CML does not discriminate, although the statistics I

have seen state that more men than women have CML. You son has every chance of

living out his life with a chronic disease, just as a diabetic.

The best weapon to fight this disease is to find a good CML specialist, I cannot

stress that enough and the other is to gain as much knowledge as you can.

Support groups fill in the gaps that the medical field doesn't tell you. If you

need to ask a question of a doctor, you have to wait until the next visit, but

we are always on tap. Everyone that I knew who had contracted the disease died

in a short while, because I didn't know there was more than one kind of

leukemia. To give you an example, I planned my own funeral with my hairdresser.

That may sound like a bit of a stretch, but 14 years ago, there wasn't much

information or drugs around. You could sit at your computer night and day and

not learn anything more than the 2 drugs that were available and very little

hope, only grim statistics. One day a light went on, I heard about this

marvelous new drug that was in trial called STI. After being approved by the

FDA, it finally had a name, Gleevec. It was the silver bullet, or holy grail.

Everyone clamored to get it. If you were dying, then you were " lucky " enough to

get into the first human trial of this new drug that revolutionized the way we

thought and treated CML. Research does not rest on its laurels, it continues and

now third generation TKI drugs are showing up, seemingly more potent than the

last group, continuing to pour more hope into the CML community. Welcome to the

community of hope.

Hands & hearts,

Lottie