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[hannibellemo]

Neutraphils at 900 yesterday so we made the decision to stop G for a week and see what happens next Friday. My local onc called my Mayo specialist and Dr. L was fine with continuing and seeing what happens next week. Dr. L sees alot more of us with CML and he generally won't stop G unless neutraphils go below 500. Dr. S is a little more conservative - after thinking about it I decided to go the conservative route - would hate to die of an infected hangnail. LOL

I'm kind of bummed, even though I know this is not uncommon and Dr. S tried to get me to think of this as a positive - bad stuff being killed off faster than they can be replaced with good stuff, etc. Still, there is a huge comfort level I will miss every day at 12:30 for the next week when I would normally take my G.

After getting all of my blood tests on my CML tracker it was very obvious that my WBCs went steadily down from 348 to 2.3 with no leveling out at all with the exception of one little bump from 10.7 to 15.3 and then back down again. Would love some support from anyone who has had to do this. What was your outcome, etc.?

Enjoy the weekend!

Pat

[rct]

After two plus years of success, my CML'r went off Gleevec for a month last summer, counts had tanked pretty bad. Stayed off, counts came up, went back on, counts went back down.  Has been on Neupogen weekly since August last year.  Our oncs, city center university type place, pretty much on top of things, think it is ok to be on Neupogen for as long as it is needed.  It and Gleevec screws up yer whole life, so we need to do something about it, probably get the CML'r out of a job, the Neupogen drastically inferferes with daily functioning.

Remember that consistent myleosuppression isn't an acceptable condition to be in, and that Gleevec "vacation"s can be not a great thing.  The current thinking is to continue 400/day and the shots once a week, better than stopping, they don't like to do that too much.  We will ask to try 300/day and no shot for a couple weeks, see what happens, maybe 300/400 alternating days, maybe 200/400 alternating days, see if we can maintain some decent level of remission while maintaining counts enough to at least not require the Neupogen.

Good luck with it, keep up with them the best you can, ask every question you can think of.

rct