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1-year Gleevec Results & Questions


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#1 LivingWellWithCML

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Posted 18 April 2012 - 10:22 AM

Hi everyone,

Wow, I just got word that my latest peripheral blood FISH and PCR were both negative.  This is after 12 months on Gleevec 400mg.  I am very thankful (and fortunate) that Gleevec has been able to get my CML under control quickly.

A few questions for the group as I put this into context:

  • I'd like to understand the sensitivity of Emory Winship's peripheral blood (PB) PCR test.  They run the test on-site, so I'm assuming that the sample doesn't degrade much before they initiate the test.  In addition, they measure log reduction against some standard baseline, although I'm still not quite sure where they get this baseline.  It states something like "baseline is an average ratio for chronic phase CML patients at diagnosis".  I was +0.50 log increase from Emory's baseline at diagnosis (through BMB/A).  What is the best way to ask the PCR testing sensitivity question, so I can know exactly what CMR means for my case?  Ask for the max log reduction from baseline that can be detected?  Or is it more appropriate to ask for the smallest ratio that it can detect (e.g., 10/1,000,000)?  And given the latest and greatest equipment around today, what should I expect?  Thanks for your feedback.
  • For my case, the CML specialist that I'm seeing does not plan to do a BMB unless there's a specific reason for it (loss of response, etc.), so all of my tests post-dx have been through peripheral blood.  I've been CCyR for > 6 months through PB and now achieved Emory's version of CMR at 12 months.  I was reluctant about this at first, but I've grown more comfortable ... and let's face it, BMBs stink.  But I know other CML specialists feel strongly about doing marrow level analysis over the first year or two, even if the patient appears to be responding optimally through PB monitoring techniques.  As fellow patients, I'm curious what your opinions are here?

Thanks for any feedback!


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#2 scuba

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Posted 18 April 2012 - 11:15 AM

Dan - You are PCRu after 12 months on normal dosage Gleevec. Go celebrate and forget about it. You don't need a BMB. You'll likely never need one again. Your peripheral blood is fine for follow-up testing. There is an excellent chance you will remain PCRu three months from now when you have your next test.

What you should be thinking about is when to start a dose reduction protocol! At some point, you may want to consider 300mg - or like Trey - head down to 200mg of Gleevec for maintenance and less side affects. And then at some future point - you may even want to stop altogether and monitor your PCR -U-ness.

Think about it this way - after one year since diagnosis, you have no detectable evidence of CML in your body. Assuming you have no other issues (i.e. myelosuppression, abnormal cell counts), you're on your way.

Enjoy a nice rich Cabernet - Napa 2009 is the rage. And Montecristo #3.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#3 GerryL

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Posted 18 April 2012 - 05:49 PM

Dan,

Stop, take a couple of deep breaths and repeat after me - "I am PCRU at 12 months and that's a fantastic result it is now time to celebrate. And I'm only allowed to get slightly anxious around the time of my next PCR test."

Congratulations.



#4 Susan61

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Posted 18 April 2012 - 06:08 PM

HI Dan:  Congratulatons on your PCRU!!!  I would be celebrating right now, not only for the PCRU but the fact that you got there in 12 months.  It took me a few years to get there, but once I got to my Ccyr I never had another BMB .  They started just doing the PCR testing, and thats all I do to this day. Every doctor  is different, but your doctor seems to feel like most that the BMB is not necessary anymore.  Enjoy your Good News.



#5 Pin

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Posted 18 April 2012 - 06:45 PM

Hi Dan,

That is some super news!  I, like you, think a lot about everything - but I really wouldn't bother thinking about what your PCRU status means in terms of how undetectable you are. Considering the response you've had so far I imagine that your levels will keep on marching steadily on downwards so it won't matter which lab is testing you anyway...Just a thought - But enjoy it for what it is

Congratulations!!!


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#6 LivingWellWithCML

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Posted 18 April 2012 - 09:53 PM

Thanks everyone.  You all are such a wonderful group...hearing this from a trusting group of patients is very reassuring to me.  I guess I haven't accepted the result just yet and I am a big numbers guy.  I was surprised to see "negative" in the email from the nurse after measuring at -2.57 log reduction at 9 months.  It just seems like an unusually big drop in a short period, especially with Gleevec - I even wonder if they messed up the test, but I always watch and quiz the person doing the draws to make sure they get the vial colors and label stickers correct.  I have been on average (thankfully) dropping by a little more than a log every 3 months, so I was praying hard for a measurable MMR, and got something completely unexpected.  I did email the nurse with my question, just to see ...

:)


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#7 GerryL

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Posted 19 April 2012 - 01:03 AM

Hi Dan,

You do know you may also bounce around a little bit with your next test. So next test you might be at the bottom end of MMR. Celebrate your success - in achieving these results you stand a very good chance of living another 50 or so years, barring getting run over by a bus.

I'm due to get my blood taken next week for the next PCR test. I've had six months between my last test which was PCRU so am not sure what to expect but am hoping for another PCRU so I can talk to the doc about a dose reduction.



#8 PhilB

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Posted 19 April 2012 - 04:52 AM

Congratulations Dan.  Response levels are so important in CML and I'm afraid the happy little dance is not a sufficient response to news of PCRU in 12 months on Gleevec .  Even Scuba's suggested cab sav and cigar is not in line with NCCN guidelines.  These numbers require a response of significant magnitude that you wake up next morning with no recollection of where you went, where your clothes ended up, or why you have a giraffe in bed with you.  Enjoy.



#9 CallMeLucky

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Posted 19 April 2012 - 07:59 AM

Congratulations Dan - your response is very good.  I agree it is not worth trying to figure out how deep your PCRU is.  I know it is hard, but we all really have to remember that these tests are not that accurate/consistent at the low level.  The fact is you are "very low" and low enough that you long term prognosis is excellent.  My response was very similar, and in my case I went PCRU, to detectable, PCRU again, to detectable again.  It's enough to make you nutty if you let it.  Just remember we're playing the long game and as long as the numbers do not trend upwards you're in a good place.


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%
 

 


#10 LivingWellWithCML

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Posted 19 April 2012 - 08:12 AM

Ok, thanks guys - this is helpful.  I'll definitely be prepared to see future PCR test results bounce back and forth, so that I can retain my sanity.  Just have to keep telling myself that it's the trend that matters most .........


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#11 LivingWellWithCML

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Posted 19 April 2012 - 08:16 AM

Ok, I'm on it Phil.  Booking the next flight to Vegas.


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg





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