You are here

Worried about results - Am I over stressing?

Hi all,

My 11 y/o son, Ben has cml and was performing phenomenally well on Glivec on 400/500 mg alternating doses. But his numbers started trending from down to upward: .65; .21; .076; .81 (July 1, 2009); and 1.21 (repeat pcr July 15, 2009.)

We had a meeting with Dr. Druker before the repeat pcr results were available (it was silly, but we had to fly across the US to see him and the airline wouldn't reschedule flights for anticipated test results.) He wasn't really worried about Ben's numbers. He said that he no longer finds it necessary to review numbers every 3 months (the way I do), but now he takes a longer view - which may span the course of years. I know he's right, but I can't be so relaxed about it right now. He feels that Ben's numbers should ultimately trend downward - even if not directly downward.

After the repeat pcr results came out higher, Druker ordered a genetic mutation test. We're awaiting the results. Ben also had his glivec levels tested (which are great, I am told.)

I'm considering my options in the event of a mutation. I'm not certain which medicine is more effective. Of course, Druker has methods to calculate which medicine is best, but I'd like to think about it myself. Some recent studies that I've read have suggested that the earlier the switch to another medicine, the better.

I'm probably jumping the gun here, but I'm worried, worried, worried.

Your thoughts are greatly appreciated.

Tracey

Tracey, I can only reflect on my own range of PCR results, which started to trend upwards from a low of 0.139% over 6 months to 0.431%. A plasma level test at this point revealed low levels of drug in blood and an adjustment upto 600mgs per day was made. Level then dropped to 0.073% but most worryingly next reading was up to 0.223%. Fortunately a retest resulted in 0.108% and over last 8 months trend has continued down. I can imagine how you feel and do hope that the retest for Ben comes up with lower PCR.
Given your consultant is Dr Druker, I am sure there can be no better person for advising on correct next steps.From all I've read on Web re CML every webcast / article by him always seems full of good sense and most up to date treatment advice. The plasma level test must have been correct course of action and the mutation test is sensible given upward trend. Perhaps Dr D. is waiting for mutations results before deciding if change of medication is required. I know certain alternative medication is better suited for tackling certain mutations than others. Perhaps others who might post can advise source of article indicating which medicines are best suited for particular mutations. I know I saw a slide on this at one of UK CML conferences .
Keep us posted on retest result which I sincerely hope will be down again!!
Kindest regards Andy

dear Tracey,

Please see my recent post which gives a link to an article about mutations and TKI therapy.
There is a PDF of the full article and I have made a couple of slides with the Traffic Light chart regarding the best TKI for any particular mutation.

I understand your worries and your desire to do your own research ;o) Hope this is helpful.

Sandy