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#1 matt92711


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Posted 16 May 2014 - 04:11 PM

Hey all,

I have been a member here and have posted occasionally. I was diagnosed in Sep 2011. Since then I have been on Tasigna, which had very good results and overall was well tolerated (some itching, hair loss, and tiredness, but nothing overwhelming). I have been keeping track of my 3 month blood results and like many others, my PCR tests would fluctuate up and down, but overall the trend was down. Perhaps, this has been the most stressful aspect of testing, in that each time I never knew what to expect if it would be lower or higher. Like I said, the overall trend was going down, but still every time I saw an upward tick, I would start wondering, if maybe there was a mutant strain that was causing drug resistance and this meant that going forward it will be up even more. In any case, I just got my latest results and I have hit PCRU (undetectable, on the international scale. The laboratory is Genoptix)!. Needless to say, this is pretty exciting news for me and a milestone I have been looking forward to over these last 2 1/2 years.

I know that PCRU is not the "be all and end all" of this, and that just maintaining any low levels of residual disease is sufficient for the treatment of CML, but that said, definitely PCRU is a big emotional boost and I hope all those of you that are hoping to achieve this, do so soon. My main point in posting this is to hopefully give encouragement to all those that have experienced the fluctuating results in PCR testing. Whatever the reason, fluctuations seem to be pretty common and do not reflect whether the TKI is working or not.

Next step, hopefully a "true" cure for this and other cancers. After reading about various advances in immunotherapy, I really believe that it is just a matter of time before the body can be trained to fight these cancers, with possibly a one time treatment involving introducing specially modified white blood cells, that will be able to specifically target cancer cells for the life of the person (that even if the stem cell that generates the CML, is not able to be targeted for whatever reason, any daughter cells that are produced that exhibit CML, will be able to be killed by the body as soon as they show up, effectively curing the disease).

Keep up the hope,


#2 mariebow



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Posted 16 May 2014 - 04:14 PM


#3 hannibellemo


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Posted 16 May 2014 - 05:17 PM

Congratulations, Matt!




"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>

#4 Marnie


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Posted 16 May 2014 - 09:15 PM

Congrats!!  It's amazing how good those zeros make a person feel!


#5 Buzzm1


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Posted 16 May 2014 - 10:17 PM

Congratulations Matt!

For the benefit of yourself and others please add your CML history into your Signature


02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive


2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17


At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  


In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  


longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.


Cumulative Gleevec dosage estimated at 830 grams


Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  


Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt

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Posted 17 May 2014 - 04:37 PM

Congratulations, Matt!

#7 matt92711


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Posted 18 May 2014 - 04:52 AM

Thanks all for the congrats.

#8 Susan61


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Posted 18 May 2014 - 06:03 PM

Congratulations Matt!!!!    You really said it all in such a good way.  Your message should be very encouraging to so many who are waiting for that PCRU status.


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