Hello

[Guest guest]

Dear CML Brothers and Sisters:

I want to thank Amy for creating this group and I hope that it will

function as the old site did before all the problems which I didn't

follow and still don't understand. What I know is that most of the

people whose technical expertise I have come to trust and to value

are now putting their energies into this group and so I am happy to

be able to be a member and to contribute when I have something to add.

Let me reintroduce myself. I am a 55 year old happily married woman

who is a textbook author and was a college professor. I was

diagnosed with CML in Dec 03 when a routine CBC done as part of an

annual physical revealed a WBC of 78,000. I began taking Gleevec on

Dec. 26 of that year and thanks to the Internet I insisted on 800 mg

dosage as I had read that M.D. was now using that as the

standard dosage for all new CML patients (I now know that this dosage

is controversial, but it's working for me). I am blessed to have

experience very minor side effects except for losing my pigment and

having a HGB that continues to tank even with Arnesp shots at max

dosage. I have yet to need a transfusion, but there is definately a

slow downward trend. My WBC runs between 2.1 and 2.4. So because of

these counts I have routine CBC's every other week. At some point I

know that my dose may have to be lowered or I may have to take

a " Gleevec vacation " but I am thankful that I have been able to

tolerate the higher dose and I have been fortunate to have responded

well to the Gleevec on a molacular level and was delighted to be able

to apply to Zavie for a Zero Club number several months after

beginning treatment (#767). My most recent BMB was in January and my

PCR continues to improve, it is now at .0048. I have health

insurance through the university from which I retired which has been

excellent. I see Dr. Giles at M.D. on a consulting basis

(this is where my BMB is done) and am attended by two local hemo-

oncs, one in Florida where we are now residents, and one in Kentucky

where we have recently moved from but still maintain a residence so

we can visit our kids and grandkids.

I can't tell you how grateful I have been for the CML warriors who

have graciously answered my questions and let me learn through their

responses to others. I am so sad that the larger group is no longer

tenable, and I will do what I can to help to make this place a safe

haven of support for all of us who are currently fighting this

disease, and those unfortunate souls who will join our ranks.

I continue to beleive that CML will become a real CHRONIC disease

which is manageable with drugs and I continue to pray that this will

happen within all of our lifetime.

Sincerely,

Kathie in Kentucky