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15 month PCR, the results are in


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#1 TeddyB

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Posted 13 August 2013 - 02:29 AM

International Scale:

          BCR-ABL1/ABL1              BCR-ABL/GUS

04.11.12     76%                         21%

06.14.12     17%                         10%

07.26.12     3%                           3%

10.24.12     0.10%                      0.08%

01.15.13     0.02%                      0.01%

04.11.13     0.03%                      0.01%

07.16.13     0.04%                      0.03%

Onc said they were GREAT results, and she talked about the margin of error on levels that low, and that a lot of patients were bouncing around those levels, and was not worried at all.

There seems to be a small upwards trend on the ABL1 tests, but i dont know if you can call numbers that low for a trend.

Guess im happy with the results as they seem to be pretty stable, i just wish they would go the other way or stay the same, for my own peace of mind

Thoughts please.



#2 CallMeLucky

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Posted 13 August 2013 - 08:48 AM

Good results, just about a 4 log reduction.  I understand your feeling though, it would annoy me too.  You are correct in saying that is not a trend.  Your last three results are "flat" and since you are MMR that is acceptable.  You are where you are supposed to be and you could stay there for the rest of your natural life without CML harming you.  I understanding wanting it to be lower, I'm sure you want it to be negative.  We all prefer it to be negative but remember that even at negative it is still there just below detectable limit.  You are in the safe zone and that is the most important thing.


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%
 

 


#3 TeddyB

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Posted 13 August 2013 - 04:50 PM

Thanks Lucky.

18 month checkup coming up soon, i hope i dont have to wait almost 2 months for those results. (They did the first "15month" blood draw in mid-June but they forgot to take the pcr, so i had to go back in mid-July and again i had to wait 4 weeks for the new results because of vacation etc, not fun.)

Yeah, a little up and down is to be expected i guess, its just a bit hard to grasp, but getting easier

Unfortunateley i have a tendency to overanalyze stuff, even before i got CML i did that a lot.

Teddy



#4 alexamay09

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Posted 14 August 2013 - 04:05 AM

These are fantastic results:) Iwas 3.24 at 9months and due my 12month bmb in  September. If I can hit 1 per cent I will be very happy. Congratulations Teddy xx



#5 Ray99

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Posted 14 August 2013 - 06:35 AM

Teddy,

   Good to hear that you have a stable PCR results.  I was diagnosed about the same time as you are.  My near term goal is to keep my PCR between .1% and .01%.  They are between .1% and .2% in the past six months.



#6 TeddyB

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Posted 14 August 2013 - 08:20 AM

Alexamay: Thank you, please let us know how it goes when your 12month results are in, i wish you the best of luck

Ray: Ive been following your progress, i hope we both keep ourselves in the <0.1% in the foreseeable future!!

I guess the faster we accept that the pcr probably will be bouncing around a lot, the faster we can try to "forget" about cml and get on with our lives.

My dream of pcru seems to be slipping away from me right now, so im just gonna have to put that dream on hold, and accept the fact that my MRD will be with me for a while if not for the rest of my life. I have a few side effects from the Gleevec, but nothing i cant manage at the moment, and life is actually pretty good considering i have Leukemia, at least most days.

Teddy






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