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A little bit worry about the qpcr result

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Hi all,

I am a CML patient from Hong Kong. Below is my CML profile. I am newly dx at Nov 2000. Then start hydrea to control the WBC. At 2003, start gleevec, the qpcr value is around 6%. At 2009, the qpcr raise to 21% and found a mutation M351T. Then I start Tasigna at 2010. At 2011, the qpcr drop to 0.02 and then came to zero and raise to 0.01. At 2013, qpcr keep zero until last report on Dec 2016 which show 0.0033.

My doc, told me that there is a fluctuation and I am at MR4. I said I have a little worry as I keep the pcru for about 3 years. My doc said it is good enough to keep under 0.1. So, just keep to monitor the qpcr value by every 6 months as usual. 

Sorry for all, I have a worry because I have a mutation experience at before. After that, I have a stress about the qpcr number raise. Actually, I feel so stress for getting the qpcr result  from the doc after mutation happened.

Does anyone has similar experience for qpcr fluctuation for sharing?

Thank you very much.

 

2000 newly dx 

2003 start at Gleeve, qpcr 6%, never reach qpcr 3% at gleevec

2009 find mutation M351T and qpcr raise to 21%

2010 start Tasigna

2011 qpcr 0.02

2012 qpcr 0, qpcr 0.01

2013 qpcr negative until last report on Dec 2016

Dec 2016 0.0033

 

Hi,

0.0033% is a phenomenal result that most patients would be very happy with. 

Often a PCRU result is misinterpreted. It means undetectable, not nonexistent. For example the PCR machines in your hospital could have been upgraded and are now more sensitive, so your numbers change without any actual change in your condition. 

I know it's easily said, but I would not worry. MR4 is excellent. 

Personally, I am always dubious about "undetectable" results. To me it just means that the test is not good enough. If it really was nonexistent then there would be no reason to take medication any more. 

David. 

Hi there

Your pcr still looks good to me.

For information, I was undetectable (0.000) from November 2009 until I went on the Destiny trial in April 2014.  Since I've been on the trial (reduced dose to 200mg and then stop), my PCR did have a couple of blips up from zero (0.002 for example) but I was told not to worry, even though it looked like a change to me.  The last one of those was a while ago now and it's all gone back to zero again.  So, it may just be a blip or even an inaccurate test for some reason - best to see what the next one looks like.

Best wishes

Richard

Thank you for your reply. Yes, it may have a lot of factors to affect the result. So I try to relax myself and don't think anymore.

Thank you for your reply and hope your trail of stopping drug is successful. Sometimes, I have a dream for stopping drug when I reach 3 years pcru. But now... it may not be come true. I hope a cure will be available in the near future.

Jacky,

You're doing great. It's already brilliant that you are keeping this close to your results. Too many people aren't savvy enough. 

So, keep an eye on the PCR numbers but take comfort  that your are doing really well. If you are feeling geKrhy with those numbers then all is well in the scheme of things.

 

David.