castlefiber,
Hi this is Pam South, I was DX with CML 2005. At routine check up had a CBC, White cell count wasn't to high but Platelets were at 2million. Had a BMB and confirmed CML. I live in Indiana & decided to fly to MD Anderson Cancer Center Houston TX. Yep confirmed CML. I went on Hydroxurea to bring the platelets down. But mostly because I was waiting to get into a Dr. to see if as a newly diagnosed CMl, if I wanted to do a clinical trial, on 400mg of Gleevec / vs 800 mg of Gleevec, and at that time you could not begin Gleevec until the study started. I decided not to do the study and went on 400 mg of Gleevec. My whited cell went down to 1.7, very dangerous low. My onc said if I got sick to go straight away to the ER. Needless to say I was vomiting with fever and went to hospital for three day on IV antibiotics. Went off Gleevec for a few week to get my white cells back up and then started back on a low dose.
The theory was to kill as many bad cells as you could, to give room for the stem cells to produce good cells, as the bad cells crowd out the good cells. However the bad cells do keep making copy's, but hopefully the TKI drugs will keep them down, at least for awhile, I don't know, things, are different for every one. It's not like a one size fits all.
I remember my doctor got scared, very worried, too. When she came in the hospital she said" I will never let that happen again." However a few month latter she tried to get me to go on the 800 mg. I don't know why she had a change of heart, as when i first went to her, and told her about the study and was the 800mg better, she said no one knows that is why they call it a study. Well that was back in 2005. I think most of her patients were breast cancer patients. Anyhow I stayed on the 400 mg.
The theory was the sooner you got a MMC response perhaps it would be better. But sometime later I read it did not matter whether you got a MMC at a later time as long as you got there. I don't remember the time frame, you would have to ask Trey.
A lot depends on the doctor and his expertise. Some doctor don't worry to much about the low counts or say it is ok to stay a little low, then others may disagree.
For me, at this point I would never let my counts get that low again. I had to be careful to sterilize all my food and drinks and stayed pretty much at home, so I wouldn't be around any sick people.
Pam
