Time to play Russian Roulette

[Guest guest]

Hi All! I don't post often and usually only respond when I think I

have something different to add other responses to a question. I

have had consistent low red cell and HGB counts for over 4-1/2 years

since I was diagnosed and last fall they began to fall below

transfusion level. After I had the normal 6 month Q-PCR in Dec. it

came back at .0013 and a BMB (also negative) and upper, lower, small

bowel checked for any type of blood loss and those tests were also

considered negative. I was having transfusions every 3 to 4 weeks and

also had an Iron infusion, After 3 months Dr. K. suggested we reduce

my Gleevec from from 400mg to see if that helped. We reduced it to

300mg (my ONC checked with Dr. K. at MD )to see how much

difference there would be. After about 45 days I started showing

that I might be starting to manufacture some red blood cells and I

was able to wait 8 weeks before I was at transfusion level again. I

had my 6th transfusion a week ago and when I met with the ONC

yesterday he felt it was time to try something else and I was in

agreement. I will be having a Q-PCR drawn in 2 weeks. I stand a good

chance of responding to procrit, but in the state where I live most

insurance companies with not pay for it unless the patient is on

infusion chemo drugs or on dialysis. My VA ONC thinks he build a

case to get it approved through them, but that is still unknown at

this time. (My ONC and I think it is too much of a risk to reduce the

dosage to 200mg because of those that have become Gleevec resistant)

I have opted take a Gleevec Holiday for a minimum of 90 days with

regular blood checks and visiting with the ONC once a month. We

certainly hope that this works and know that it can only happen with

guidance beyond my or the ONC's abilities. My thanks to Skip and

R. for reposting their histories recently for helping me to

make this decision. The comforting knowledge is that I am doing

this knowing that if it does not work that I can pick up with Gleevec

and possibly procrit where I am leaving off or at a higher dose that

400mg and 2 proven studies that are working for many that do become

resistant to Gleevec. Sorry to have been so long winded but I didn't

want to leave most of my major considerations unspoken. Thanks,

until later

H.

dxd 2/03

400mg Gleevec 3/03

CCR 11/03

PCR negative 11/04

Q-PCR .0014 11/05

Q-PCR .0013 11/06

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