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9 Month Results


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#1 Tom1278

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Posted 29 April 2013 - 04:56 PM

Hi everyone!

So, I just got my 9 month results.  My hematologist says they are good, but I'm not feeling it.

My 3 month results weren't great, then I had a big drop at 6 months, and now I'm here:

7/25/2012

10/17/2012

1/23/2013

4/23/2013





FISH

97%

71%

4%

1%





PCR - International Scale

145.01%

39.73%

5.73%

4.59%

PCR IS Log Reduction

0.562

1.403

1.499

I was really confident I'd get to CCyR this time, and I didn't.  It seems like I hit some sort of plateau.  I think the anticipation of CCyR is what is driving my disappointment in the results.

So... am I doing fine, and overreacting?  Or should I get a second opinion?  I'm on 400 mg Gleevec with no side effects, 34 years old.

Tom


Diagnosed with CML in July 2012 (33 years old)

MMR since March 2015; E453K mutation

600mg Gleevec

 


#2 John

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Posted 29 April 2013 - 06:48 PM

Hi Tom,

I think you're doing fine.  Here was my progression to PCRU and you can see the same thing happened to me a couple of times.  I even had a little uptick in the beginning which really freaked me out.  It took me about 18 months to hit PCRU and I've been on 400mg of G the whole time.

DateMajor e13a2 (b2a2)Major e14a2 (b3a2)Combined
9/23/20080.040%0.605%0.645%
12/3/20080.004%0.794%0.798%
1/16/20090.016%0.162%0.178%
3/31/2009Not Detected0.028%0.028%
7/8/2009Not Detected0.020%0.020%
11/2/2009Not Detected0.007%0.007%
1/26/2010Not Detected0.004%0.004%
3/26/2010Not Detected0.004%0.004%
7/23/2010Not DetectedNot DetectedNot Detected

John



#3 Trey

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Posted 29 April 2013 - 07:56 PM

You would appear to be doing above average.  The FISH has a margin of error of about 1 - 2 %, so your FISH is essentially CCyR.  Since these FISH are "color" tests, the colors can get blended and show positive when they are not.  So at 9 months you are actually ahead of the goal for CCyR (or margin of error close to it). 



#4 CallMeLucky

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Posted 30 April 2013 - 11:03 AM

Not uncommon to see big drop then level off followed by further decline.  Essentially you are CCyR as Trey stated.  I would wait another 3 months before thinking about doing anything, so far you seem to be doing well.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 





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