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Another rant -- now I'm worried

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#1 Dom


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Posted 06 February 2016 - 11:11 PM

Hi friends,

I posted last about my test results that steadily declined to 0.03, and then suddenly jumped to 0.5. What I didn't mention was that my onc reported on the phone that the jump was to 0.05, which didn't much worry me. But then I saw the results on line, and it was actually 0.5, and I called to mention his error. Everyone here convinced me that the jump (to 0.5) was not really that bad.

My onc ordered a new test one week later, and called to say the new result was 0.07. Big relief! But guess what? It was posted on line ... And it's actually 0.7. Once again, he stuck a zero in where it didn't belong.

So now I'm worried all over again. Does anyone else have this sort of effect on gleevec? That is, a drop and then a jump? Is it reasonable to assume there is still a chance it will drop? I REALLY don't want to change tki's. I had one month of side effects on gleevec, and then nothing ... zero ... It's like drinking water. The other tki's have cardio effects which I can't afford because I already have 5 stents.

Any long time gleevec users out there?

Diagnosed in February 2014. Started Imatinib 400 in April.
2014:     3.18     0.91
2015:     0.22     0.16     0.04     0.55
2016:     0.71     0.66

(Started Imatinib 600 in April 2016)
2016:     0.42     0.13     0.45
2017:     0.17     0.06     0.10     0.06     0.34

#2 Sneezy12


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Posted 07 February 2016 - 06:34 AM

Does he have a visual problem? This type of carelessnes is inexcusable. You need a new Oncologist.

#3 Trey


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Posted 07 February 2016 - 12:07 PM

The .03 could have been the result which was not indicative of your true status.  If you take that out your PCR has been very flat.  To get lower you may need an increased dosage of Gleevec.

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