Posted 25 August 2015 - 05:18 AM
On a different note, thanks everyone who responded on my blood sugar issue. For some reason (maybe food), it's much better now. I just hope it doesn't fluctuate any more.
Posted 25 August 2015 - 09:07 AM
I'm not sure what the test means but it definitely does not mean you can stop taking your meds. Did your doctor not explain that for most of us this is a drug we will take for life? Perhaps at some point, a few years down the road you can reduce and maybe even stop the drug to see if you will be one of the lucky few whose immune system can control the BCR-ABL, but that time is not now.
I would assume there was an issue with the blood sample that did not allow it to determine the amount of BCR/ABL. Mine says "undetected", but that still does not mean our blood is free from BCR/ABL, just that relatively speaking compared to total blood volume the amount is very, very small. Still might be in the millions, however.
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Posted 25 August 2015 - 05:53 PM
The term "undetermined" is not standard terminology for PCR results. Is that the exact term used?
Quantitative PCR results should be positive with a number, or negative/undetectable/not detected, or sample not usable (spoiled, insufficient quality or quantity, or something like that). Some labs will add another result "positive but below the limit of quantification".
Posted 25 August 2015 - 10:10 PM
Posted 26 August 2015 - 11:38 AM
One of my sample results was "NON-QUANTIFIABLE".
Explanation: BCR/ABL1 was detected, but below the sensitivity threshold.
Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.
Rx: 03/2012-Gleevec400. Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).
Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.
Posted 26 September 2015 - 02:16 AM
Posted 26 September 2015 - 02:17 AM
Posted 26 September 2015 - 03:49 AM
I got a reply from the lab and they could not detect bcr-abl in my blood. Very happy.
You need to get a stable undetected for at least 2 years and then work with your doctor if you want to try coming off.
Your doc needs to keep a close eye on you if you do stop, as the CML can return quite quickly. You also need to keep in the back of your mind that more than 50% of people stopping have CML return.
Not meaning to rain on your parade, but you have to be patient and also aware of potential failure for stopping.
In the meantime congratulations on your PCRU. Time for a happy dance.
Posted 04 October 2015 - 12:51 PM
Posted 05 October 2015 - 09:19 AM
Ha anyone experience the following?
Here are my results from last month. The lab just switch to th IS in 2015 and my first result was 0.09%. Also on Tasigna 600mg/day
International Scale (IS) <0.10 Major molecular response (MMR) corresponds to 0.1% IS. p210 Comment P210 BCR-ABL fusion transcripts detected in 2 of 2 replicates. However, the signal of both replicates falls below the linear range of the assay and therefore cannot be accurately quantitated. We therefore recommend close monitoring with repeat testing when clinically indicated.
Posted 05 October 2015 - 09:12 PM
That is a MMR result. Great news.
The bottom paragraph is just boilerplate language on all the PCR results from that lab, so ignore that.
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