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Another PCR test results posting!

Hello all,

I've not posted on the forum for many months, however I look at what people are saying regularly - all very encouraging and interesting. I just received back my 18 month PCR test result and, whilst not too concerned about it at this stage, am interested to find out more about the implications. 3 monthly results for the last 18 months have been;

15.36% 1.02% 0.382% 0.204% 0.106% 0.130%

so obviously the last one is most interesting. I seem to be in roughly the same position as Andy and Janet in that, after a steady fall in %age, there's a bit of a rise.

My consultant wants to put me up to 600mg and I have requested another PCR test (tomorrow) so I know exactly where I stand.

A few questions;

- What is the margin of error on these test results? The result print out gives 'uncertainty of 96% for low BCR/ABL ratios ie less than 1%'. I have read that an error of half a log is normal. What does this mean in terms of numbers?
- has anyone had adverse effects of increasing dosage from 400 to 600mg? I have tolerated 400mg fine. It now seems to be more standard to start people on 600mg than 400mg - ?

Any comments or advice welcome!

Thanks

Kenny

Kenny

I went from 100mg to 200mg (worst side effects) to 400mg to 600mg which is now my current dose.

Had marginally more side effects mainly weight gain, hormonal issues and eye edeoma, plus bone pain. However have achieved
MMR within the year and down to 0.001% and on Zavies Zero Club
No 1197.

In Australia the normal dose seems to be 600mg

Sue H

Hi,

my husband is kind of the same situation.
He's got his 12 month test he seems to be stoped at 2 log (so still is not in MMR during this first year) reduction since the month 6. His doctor also wants to raise the dose to 600 mg. Not sure about that, since he noticed intensive side effects at 400 mg(dizziness, fatigue, heart pain, bone pain, mainly).

regarding the test, depends on how good your testing laboratory is, usually for real-time PCR we use three replicates of the same sample trying to optimize at minimum levels the SD (that should be kept under 10% but is depending on the assay). Usually is quite sensitive.

Carmen

Hi Kenny

Firstly, congratulations on the baby and commiserations on the accident! Hope everything is going well on both counts...

Now - 600mg. Welcome to the club! I have been taking the increased dose for 3 months now and have experienced very few additional side effects. My eyes are a bit blurry and they are very watery, and I feel a bit more tired than I did before. But that's all.

I had a PCR done after 2 months on 600mg, and this came back with a drop from 2.2 to 2.6 log reduction. My consultant was very pleased, apparently only about 50% of people benefit from increasing the dosage. As for me, I'm delighted! As far as margin of error is concerned, I asked my consultant about that when my results were standing still a few months ago, and he reckoned that it is only about 0.2log these days.

I haven't had the blood level test done, my consultant has always been a bit reluctant, and apparently it is not all that easy to sort out even though Novartis have made it free in Europe.

Best of luck Kenny and keep in touch!

regards, Janet

Kenny,
I would say that your pcr's have levelled out rather than risen.... this may be why your doctor wants to increase the dose. However, with patience you may yet see more zero's. As long as you have your pcr's done in the same lab, and they remain stable as yours are, then there is not much to worry about. Log reductions may not be the holy grail after all.... rather a CCR with stable pcr's may be what we should all aim for.

It may be a good plan to have a plasma test... see under newswire for how to get your doctor and lab to do this.... to see if you as an individual are maintining a good level of Glivec. It can vary so much between individuals and this can have an impact on response. If the level is lower than it ought to be then it may be that you need a higher dose.
hope this helps,
Sandy

First, a big

Y A H O O O !!! Y I P P E E E !!!
Number 1205 in the Zero Club
Zavie

The margin of error on PCR tests is 1/2 log. Your results are well within this limit and are very stable. The 0.13 value could go as high as 0.63 and still be within the error of the PCR test.

Side effects tend to increase with dose escalation.

The reccomended starting dose of Gleevec for patients in Chronic Phase is still 400 mg.

I would question your consultant's plan on increasing your dose to 600 mg. On what clinical evidence or study does he base this decision on?

The current thinking by Dr. Brian Druker and Dr. Eduardo Olavarria is to keep a patient on a 400 mg as long as the patient has achieved CCR and the PCR results remain stable.

Please write me,

Zavie Miller
zmiller@sympatico.ca

First, a big

Y A H O O O !!! Y I P P E E E !!!
Number 1205 in the Zero Club
Zavie

The margin of error on PCR tests is 1/2 log. Your results are well within this limit and are very stable. The 0.13 value could go as high as 0.63 and still be within the error of the PCR test.

Side effects tend to increase with dose escalation.

The reccomended starting dose of Gleevec for patients in Chronic Phase is still 400 mg.

I would question your consultant's plan on increasing your dose to 600 mg. On what clinical evidence or study does he base this decision on?

The current thinking by Dr. Brian Druker and Dr. Eduardo Olavarria is to keep a patient on a 400 mg as long as the patient has achieved CCR and the PCR results remain stable.

Please write me,

Zavie Miller
zmiller@sympatico.ca

Hi All,

By means of a quick update on my situation for those who are interested...read on...

As per the first posting on this thread, my 3-monthly PCR test results were;

15.36% 1.02% 0.382% 0.204% 0.106% 0.130%

After the last 0.13% result, I was put onto 600mg. Before I started taking the increased dose, I requested another PCR test, the result of which came out at 0.067% - more along the lines of what I was expecting from the one which (worryingly!) came out higher. So, discounting the higher 0.13% result, the downward trend follows a smooth (more or less exponential) curve, indicating that the high result may have been an erroneous result or other form of 'blip'! I thought that was quite interesting. Despite this, my onc has decided to keep me on the 600mg dose and we'll evaluate progress at the next quarterly check.

The way I looked at it, as long as I am tolerating the elevated dose, taking it can only be beneficial and will hopefully get those BCL/ABL's down as low as possible...

No real side effects on 600mg apart from being more prone to nausea upon taking the pills if I don't have a substantial meal.

All the best.

Kenny

Kenny, Congrats on latest PCR result. As you say the .13% was just a blip in the downward trend. The earlier posts on your original e mail were spot on in terms of the error factor in PCR results and the need to take action only after 2 upwards results of a certain size. I do take your point re 600 mgs though. If no bad side effects then if the higher dose helps to get lower PCR's then that can't be bad. Andy

Thanks for the comment Andy - yeah, agreed. We'll see what the next test brings in a month's time or so!
Kenny