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Thank You Trey! Today I felt empowered!!

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#1 Mayra



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Posted 08 May 2013 - 09:16 PM


Since December I have read and reread your blog many times.  Almost like a textbook I'm trying to memorize.  So when I called my doctor today to check on PCR test from Monday I asked her to call the lab to make sure they had received the results.  The nurse called me back and informed me that it would take 10 days to get the results because the blood is transferred to one lab and then transferred to another before getting tested.  I then went on and told her I wasn't happy about that and that I needed to get information about the lab transfer.  I asked several questions which she didn't have the answer to and finally she said can you please email me your questions so I can ask them to the lab manger the way you'd like me to ask them???  I sent her the following:

I asked:

1) Where Is the PCR BCR/ABL tested? In lab vs sent out to another lab.

2) If sent to another lab how long does it take to get there before its tested? (See below for reasoning)

Although the PCR results are expressed in multiple decimal points, they are not all that precise. There are many variables, the most significant one being time from blood draw to actual PCR testing. If a PCR is done immediately after blood draw it will be higher than if the test is done 24 hours after the draw. If it is done 48 hours after the blood draw (the time limit for most labs), then the PCR number will likely be at least 1 log too low.

With a PCR, the sample should be processed within 24 hours for best results, since the sample degrades rapidly, which affects results (the longer the time, the "better" the PCR result appears to be)

3) How are they transporting the blood?

I was able to quickly navigate your blog and quote the important parts to add reasons for my requests. Thank You for empowering me to advocate for myself.

You were  right on about my thyroid issue as well.  It turns out it was soft tissue Edema. My ultrasound came back normal as well as all my labs.

Now to wait on PCR results!

#2 teb


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Posted 09 May 2013 - 01:47 PM

Hi Mayra,

I was diagnosed 2 yrs ago. It's been a long journey. I would like to feel empowered! Where can I find Treys info. I always read his responses and they encourage me so I have decided after 2 long years I need to understand my illness like a textbook.

#3 Mayra



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Posted 09 May 2013 - 02:26 PM


You can find his blog here:


It has really helped me learn a lot about this disease I'm fighting everyday!

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