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A little bit freaked out


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#1 snowboots

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Posted 26 April 2016 - 05:56 PM

Just changed oncs and was much happier with her knowledge. She did my 3 month PCR test (new lab) and I was shocked to see that I went from .03 to .2 !  Pretty sure I'm reading it right. Can there be this much difference in the lab? Or am I heading for disaster?  Appt. to review with her on Thursday. Any advice on how I should question this? Should I ask for another test? Kind of scared right now.

6/15  .68

10/15  .05

1/16 .03

4/16 .202



#2 JPD

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Posted 26 April 2016 - 06:21 PM

You're not headed for disaster.  Difference in labs could be that much.  I'm sure they will just want you to retest in 3 mos. 


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%


#3 Trey

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Posted 26 April 2016 - 08:07 PM

That is more than a log difference.  I would ask for an immediate re-test.



#4 CML2012

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Posted 26 April 2016 - 09:16 PM

I went from PCRU (4 months ago) to 0.04 (1 month ago) when my doctor switched labs. I just went in Monday for a retest. We will see what happens. I am pretty sure this is also more than one log?
Diagnosed CML December 2012
Gleevec 400 mg
PCR 53%, 41%, 1.69%, 5.63% (Mutation test negative) September 2013
Sprycel 100 mg
PCR 1.1%, 0.2%, 0.2%, 0.6%, .09%, .06%, PCRU June 2015, PCRU Sept 2015, PCRU Dec 2015, 0.042% Mar 2016, 0.122% April 2016, 0.19% June 2016, 0.176% July 2016, .052% Sept 2016, .031% Nov 2016
Diagnosed Basel Skin Cancer December 2012, October 2014 (All cancer removed)
Diagnosed Melanoma April 2015 (All cancer removed)

#5 snowboots

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Posted 27 April 2016 - 10:56 AM

My old onc used Miraca labs in Arizona. This one looks like it came from the local hospital lab. I will know more tomorrow at my appt.. Confused about "logs", although this report says I have a 3.210 log reduction.



#6 Antilogical

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Posted 27 April 2016 - 12:00 PM

My reports give the log reduction since diagnosis, and the change since the last test.

Were the Miraca lab results reported in I.S. or were they calculated with a local housekeeping gene?


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.


#7 snowboots

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Posted 27 April 2016 - 03:40 PM

They were definitely IS



#8 snowboots

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Posted 04 May 2016 - 11:31 AM

Well, had my follow-up appt.  Doc says not to panic since it was done at a new lab. She will retest in 3 months, but do a CBC monthly until then. Still is worrisome though - all this waiting.....



#9 PhilB

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Posted 04 May 2016 - 12:34 PM

I would agree with the doc about not panicking and the new lab being the likely culprit, but I would still have been pushing for a new PCR test.  I hope the monthly CBC was requested to keep an eye on some anomaly found in your latest CBC?  If your CBC was fine and the onc is doing it instead of requesting a new PCR then they are an idiot as it would be like checking how someone's ingrowing toenail is doing by counting their legs once a month.



#10 Gail's

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Posted 06 May 2016 - 01:18 PM

I do monthly labs. Have ever since diagnosis in January 2015. Bcr-abl every 3 months. The monthly labs are monitored by my pharmacist. Won't dispense my drugs till I do them. Kaiser is very serious about checking for altered blood counts and liver issues.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#11 thatguy

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Posted 06 May 2016 - 09:01 PM

I had test at City of Hope that showed a pcr of 4.1% i.s when my normal lab had consistently showed 1.7%, 1.5% and 1.1% immediately following, because it freaked me out. Labs definitely could be the cause.
3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)




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