Hi, i have been on gleevec for about 10 years. In 2010 my test results came back higher than they were. I was at 0.00 and then it was 0.078. After another test it was 0.00 again. It has been like that until now. My last result was 0.287 and the doctor said dont worry about it we will test again in 3 months. I am very worried that the cml is getting worse. I have a 6 year old and a 12 year old and can not stop thinking about it. It seems like the numbers are much higher than before, it took almost 2 weeks to get the results back.
PCR test results changed
Started by
rsg325
, May 30 2014 11:01 AM
6 replies to this topic
#2
Trey
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Posted 30 May 2014 - 04:03 PM
You have not lost MMR status, which is good. But if it were me, just for the sake of my peace of mind I would have the PCR re-accomplished sooner. The Onc can say it is not necessary, and in a clinical sense he may be right. But I would ask for a re-do. If you lose MMR (above .1% Int'l Standard) a drug change would not be a bad idea.
#3
rsg325
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Posted 30 May 2014 - 06:57 PM
The reason the doctor said he wanted to wait 3 months is because this happened once before in 2010 and on the next test it came back 0.00 again. He said if it continues to go up we can try another lab. Also the doctor that i had before which retired told me not to worry either because the same thing happened before. I really trusted him, I wish he didnt retire. I have been on gleevec so long im scared to go to another because of the side effects i hear about.
#4
Trey
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Posted 30 May 2014 - 07:55 PM
If you are happy with waiting, nothing wrong with that.
#5
rsg325
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Posted 30 May 2014 - 08:23 PM
Im sorry to keep asking these questions but could you explain what you said I really dont understand. And if the test was right is 0.287 from 0.00 a big change? "If you lose MMR (above .1% Int'l Standard) a drug change would not be a bad idea."
#6
rsg325
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Posted 31 May 2014 - 07:22 AM
Does anyone know how long it usually takes the PCR test results to come back from a lab?
#7
Trey
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Posted 31 May 2014 - 08:29 AM
The PCR increase is larger than you would normally expect, assuming the same lab was used. But a "big change" in PCR must be put into the context of the overall response level. Since you have maintained a Major Molecular Response (a 3 log reduction which is considered a great response level) you are still doing very well, so the PCR increase is not much of a concern. You appeared to be concerned about it, so I suggested a re-do.
A PCR test is accomplished within a day or so of receiving the sample, but the report is often not available for another couple weeks due to the lab paperwork cycle.
If you want to read more about CML testing here is a link to CML overview information:
http://community.lls...ttype[document]
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