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BCR/ABL Percentages

I have been reading with interest posts about the BCR/ABL results but can take no comfort.

I was diagnosed back in May 2007 and was given 400mg Glivec. My first PCR result came back in Oct 07 at 32%. The second result was Feb 08 at 24% and my third one came back a couple of weeks ago and had gone up to 48%. I have been referred to Addenbrooks and have my first appointment next week but really don't know what to expect.

A couple of months ago I was taken off Glivec for 3 weeks because my blood counts were too low and although they have now recovered I don't know if I will be able to tolerate higher dosages.

I have tried really hard to stay positive but was knocked back by a gastric bug last week which has left me feeling really low. I could certainly do with some good news about now as could my husband who has been fantastic throughout this whole trial but who I know goes through it as much as I do.

Thanks to all you 'posters' out there who take the time to pass on your wisdom.

Good health to us all.

Helen

Dear Helen, I am sorry you are feeling so low and can understand why. Your response to Glivec has obviously not been optimal and you should talk to your doctor about the possibility of further testing to see why this might be. It may be that an increase in dose would do the trick but as you say your low counts may prevent this. Plasma trough levels can be easily tested to see if you are holding enough of the drug consistantly enough for it to work. Your could ask about the possiblity of this. It is a very simple test. Testing for a possible Glivec resistant mutation may be a further test that your consultant would want to do if your plasma trough levels are not below 1000 ng per ml.
It may be that you would respond to one of the new generation of inhibitors... either Sprycel (dasatinib) or Tasigna (nilotinib). Your referral to Addenbrookes is the first step to solving your sub-optimal response to Glivec. I know it is hard to hold your nerve and it must be hard for your husband too, but there will be answers and you have the best chance of overcoming your problems by being treated at a specialist CML centre.
Do keep us updated.

Best wishes,
Sandy

Helen, Given how I felt about my readings, I can really appreciate how you feel. I do hope that some of the avenues that Sandy has outlined in her post are pursued when you visit Addenbrookes next week, and this helps you. I know throughout the last 15 months things have seemed a bit better to me if one feels that action of some sort is underway as opposed to just being forced to wait for the next test result. I would never have thought before that waiting for test results could seem so long!
As a relative "new boy" to all this I can't add anything to Sandy's post apart from having read on other posts of the fact that sometimes one can take a growth factor to boost white blood cell count, which may avoid drug holidays. I am sure others could amplify this point. My white cell count was getting very low after I first went onto Gleevec and my specialist talked about a drug holiday. Fortunately the white cell count rose so I didn't have to raise the growth factor issue, but I did wonder why the growth factor issue hadn't been mentioned to me.
Hope things look a bit brighter after next week. Andy

Hello Helen
Had the same problems as yourself, but in 2001, took a bit of juggling about to get the optimum dose for you. It is not true, that one dose fits all, but the dose you are on is used as a starting point. Good advice has been given, and in my own case, I ended up on 300mgand 400mg on alternate days, so 700mg every two days, worked ok for me, but not enough to get to CCr, had to move onto dasatinib to get that far. Please don't get down hearted, as this is not an unheard of situation.
Stay positive
Have fun and keep smiling
Keith