Ignorant and scared

[Janeto75]

I just found out on the 16th of November that I have CML(Cronic Myeloid Leukemia)  I have a lot of questions and all I see when I go to the doc are nurses and they tell me 2 different things.  My WBC count was 8,500(8.5)  on Wednesday Nov,28  and the nurse told me the week before that 2,000(2) was dangerous. Well they scheduled me for another apt on Friday (2 days later)  my WBC count had dropped to 4,000(4) and now I don't have another apt until the 10th and I am worried that I will be dropped down to dangerous before I get to go back.  They took me off the meds that were making my count drop but it takes a bit to get out of your system.  Should I be worried?    Thank You,
                                                                                                                        Janet

[riley180]

Hi.
Dramatic responses are known to occur such as in your case. The treatment generally entails targeting lower than normal minimum counts. There are levels that are too low, in which the treatment will be adjusted.
Just listen for symptoms and consult when they come, otherwise inquire for scheduled follow-up days. Its generally easier to see your doctor on a scheduled appointment that he sets aside.
Stay positive.

[Janeto75]

thank you again.  I can't seem to get to see the doc.  I see a nurse when I go.  All they tell me is that my WBC count has went down.  I have a biopsy on the 12th, maybe I will find out more then.  They took me off the Hydroxyrea on the 28th but I am still taking the Gleevec.  I am under the impression that the Hydrea is what makes my levels drop and the Gleevec kills the abnormal.  I started off with a WBC count of 50,000(50) and it dropped down to 4,000(4) in less than a month I guess that is what worries me, because I know they are dropping fast and I am just affraid that they will just keep going.  But I guess this is what it's all about huh.

[riley180]

Hi.
I think you need to talk things over with your doctor.
Treatment decisions for CML generally involve the amount of abnormal WBC. From the numbers you noted, I'm assuming that these are totals.
The meds do induce a reduction in WBC (so you are experienceing a usual, predetermined response to therapy), but a very low level is avoided (as too low WBC count may predispose you to infection). It is unlikely that the meds will be completely discontinued (I get the impression this is how you understand things), but the dose will be adjusted to hit the proper spot of reducing the counts to normal without experiencing the side-effects.
Treatment decisions are generally based on the abnormal components from the WBC population, and not entirely on the total WBC count.