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bcr coount

Hi wonder if anyone can help with advice? I was diagnosed with cml in 2003 and started on 400mg of glivec a day. My counts have not changed much, they go between 0.45 0.055 0.27 .057 This has been happening since the start of the treatment. I was put onto a higher dose of 600mg in 2006 but it made no difference to results. Was at my clinic on Tuesday and asked the doctor if he felt that I should try a different tablet, he thought that this might be a possibility. The other matter that bothered me was that my neutrophils were down to 1.8 and under the wanted range.
Can anyone guide me as what to do and what counts are normal.

Robert McAdie

Hi Robert,

The fluctuation between results are within the sensitivity limits of the PCR test itself. I would ask about the sensitivity of the lab that you are being tested at. If it is not at least 1:100,000 then I would ask to have your sample tested at a different lab.

I had a similar problem with my PCR results and asked for my blood sample to be sent to two different labs. Sure enough they were different by .5 log.

Your results indicate that you are in CCR. This gets you a number in the Zero Club.

Y A H O O O !!! Y I P P E E E !!!
Number 1248 in the Zero Club
Zavie

Maintaing CCR for several years means that there is very little chance that you will ever relapse with your CML.

Zavie

Please write me at: zmiller@sympatico.ca

Zavie Miller (age 70)
Ottawa, Canada
dxd AUG/99
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
3.6 log reduction Sep/08
e-mail: zmiller@sympatico.ca
Skype: Zavie Miller

Hi Robert,

It might be that you would see a deeper response with another drug... either dasatinib (Sprycel) or nilotinib (Tasigna).... If your doctor is willing to change your therapy I suggest you talk to him about the possibilties.
regarding your neutrophils...well 1.8 is not too bad... when I had my transplant I was allowed to go home when my neutrophils reached 1. Also if your cells are slighty on the lower side then it does mean that imatinib is doing its job and getting rid of CML cells.

I think you should talk to your doctor about testing for mutations and/or plasma trough levels. If you have the correct plasma level of imatinib (1000ng per ml) and you are still worried about your up and down results then a change to one of the other drugs might be a good idea.

Sandy

thanks

Have had a test for mutations and am relieved that it has come back negative. Neutrophils down to 1.6 but am reassured by you being allowed home after transplant with a result of 1.
I think that I have found the answer to another problem as well.
Since starting the higher dose of 600mg I have been having terrible diarrhoea and stomach cramps, my wife thought that dairy products were making it worse. I tried a week of using soya milk and ate not foods which contained milk and what a difference. Introduce dairy back into my diet and the problem started up again with a vengance. No more dairy for me.

Hi Robert,
dont be in a hurry to change to Dasatanib or Nilotinib,if your getting those results on Glivic stick to it,Neutrophils at 1.8 not bad ,you can have GCSF if required to surport your count,
always nice to keep the second generation drugs as reserve,dont forget if they dont work,Its transplant time.
Your doing good,

Robert

I found the same issue - dairy does not only send me to the loo but also I feel quite queezy during the day

I found eating quite alot of food - stodgy prior to glivec
does the trick

I have 3 pieces of toast with jam - no butter or margarine
No yoghurt or tea or coffee

Water most of the day - with perhaps a hot beverage normally hot chocolate at end of day - with reduced milk or very low milk

Sue