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Am I truly undectable?


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#1 Mayra

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Posted 08 May 2014 - 10:06 AM

My test results came back today! !! What does everbody elses reads when undectable:  No result is a Is this available for this specimen.  After multiple attempts the assay specific minimum requirements necessary to generate a result were not met for this specimen.   This may be due to nucleic acid concentration below the detectable limits for the assay or factors influencing the integrity of the specimen.



#2 Trey

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Posted 08 May 2014 - 02:43 PM

Is that the exact wording?. Unfortunately based on the information you provided I would assume it was a spoiled sample.  Although PCRU results would say "Below detectable limits" it does not relate it to all nucleic acid levels as this statement does.



#3 Mayra

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Posted 08 May 2014 - 03:10 PM

Trey, what should I do?  Should I get my doctor to retest?  Should I call the lab for clarification?

Mayra



#4 Mayra

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Posted 08 May 2014 - 06:25 PM

I called the lab and they said it's their standard response for anyone who is undectable.



#5 Trey

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Posted 08 May 2014 - 08:53 PM

I have never heard of a lab report saying it is either PCRU or spoiled, and you are supposed to pick one of those options.  You should ask your Onc to deal with the lab and sort it out.  Any lab which is so indifferent to the patient should not be used for such important testing.  They should go back to making moonshine or something else useful.



#6 GerryL

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Posted 08 May 2014 - 10:53 PM

They seem to have had a foot in both camps - undetectable or issues affecting the specimen. What was your result before this one?



#7 ChrisC

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Posted 09 May 2014 - 01:16 AM

Hi Mayra,

I do hope that you get this sorted out, so that in the future there is a clear determination every time.

FWIW, my results come back:

. . .

BCR-ABL1/ABL1 %            0.000

BCR-ABL1/ABL1 % (IS)     0.000

. . .

Interpretation: The P190 and P210 BCR-ABL1 fusion transcripts are NOT detected.

. . .

This Test Performed At: Quest Diagnostics . . .

. . . then it repeats:

P190 BCR-ABL1     NOT DETECTED

P210 BCR-ABL1     NOT DETECTED

All the best,

ChrisC




Be alert, but not overly concerned.

 

• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week

• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)

• Oct. 28, 2008: CML confirmed, start Gleevec 400mg

• Oct. 31, 2008: sent home when WBC reached 121k

• On/off, reduced dose Gleevec for 7 months

• April 2009: Started Sprycel 100mg

• Sept. 2009: PCRU 0.000

• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)

• Currently: still steady PCRU, testing every 6 months 🤗

— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!

 

 


#8 Mayra

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Posted 09 May 2014 - 08:48 AM

Gerry,

These are my results since diagnosis.

   Lab Standard.              International

12/12                3%.                           Not Done

2/13                  .37%.                             6.29 %

5/6                 Not done                          6.49%

6/26.              Not done.                          0.4602

9/18               Not done.                          0.2056

12/6.                                                        0.29

2/07.                                                        0.0315

4/30.                                                         Not Detected

I was able to download the enhanced report and it basically says the same thing.



#9 Mayra

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Posted 09 May 2014 - 09:45 AM

Interesting the nurse from my Doctors office just called and she said he had reviewed the results and is sure I'm CMR but wants to retest in two months.  I asked if the called the lab and they indicated they had not.



#10 GerryL

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Posted 09 May 2014 - 10:10 PM

You've been moving in the right direction, so the possibility is there. I'd have a little celebration anyway, if I were you. You will know for sure in two months time.






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