.15%
8 replies to this topic
#1
r06ue1
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Posted 24 March 2016 - 01:45 PM
08/2015 Initial PCR: 66.392%
12/2015 PCR: 1.573%
03/2016 PCR: 0.153%
06/2016 PCR: 0.070%
09/2016 PCR: 0.052%
12/2016 PCR: 0.036%
03/2017 PCR: 0.029%
06/2017 PCR: 0.028%
09/2017 PCR: 0.025%
12/2017 PCR: 0.018%
Taking Imatinib 400 mg
#2
Buzzm1
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Posted 24 March 2016 - 02:20 PM
that's good news!
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
2012 PCRU, PCRU, PCRU, PCRU
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 Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
#3
kat73
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Posted 24 March 2016 - 04:15 PM
Way to go, marching to the right! (of the decimal point, I mean - no political statement intended 
)
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
#4
gerry
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Posted 24 March 2016 - 09:41 PM
Congratulations, not far off MMR.
#5
IGotCML
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Posted 24 March 2016 - 10:29 PM
Very good results!
#6
tiredblood
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Posted 24 March 2016 - 10:42 PM
Well done, Ro6ue1. From what I understand, that is a great response. I'm celebrating with you.
As a friend of mine would say, "Take your medicine." I'm not sure a lot of doctors stress the fact of how very important it is to take the TKI regularly. Just before I was diagnosed, a coworker's family member died from CML and likely from non-compliance. She went through a lot after reaching blast phase prior to her death. When I was diagnosed sometime after that, I was like... that sounds like what so and so had. Sure enough, I too had CML. It was her death that really cemented in my mind the importance taking it regularly. I never met her, but think about her often and how much her experience helped me. When I see the LLS yellow lantern, I think of her. I think I read somewhere that <90% compliance is risky, but I can't cite the source.
#7
Melanie
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Posted 27 March 2016 - 10:56 PM
Congratulations! Really great response for 6 months!
Tired blood, thanks for your comments on compliance. Dr Cortes stated the following in his "Managing CML" presentation in September of 2015. Found it quite eye opening.
"We also know that patients that miss 10% of their doses or more, essentially none of them get to be completely undetectable. Now, if you think about it, 10% of the doses in a month is missing three doses. Three out of 30 days means 3 doses. So, it doesn't take too many doses missed to decrease the chances of getting to these deeper responses."
As you say, take your pills...
Tired blood, thanks for your comments on compliance. Dr Cortes stated the following in his "Managing CML" presentation in September of 2015. Found it quite eye opening.
"We also know that patients that miss 10% of their doses or more, essentially none of them get to be completely undetectable. Now, if you think about it, 10% of the doses in a month is missing three doses. Three out of 30 days means 3 doses. So, it doesn't take too many doses missed to decrease the chances of getting to these deeper responses."
As you say, take your pills...
Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)
#8
hannibellemo
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Posted 28 March 2016 - 06:21 AM
Wonderful!
Pat
"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>
#9
r06ue1
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Posted 29 March 2016 - 09:17 AM
Thanks all. I was a little nervous after leaving the office after my test; the routine blood tests showed my white blood cell count had returned to the normal range (a little over 5) but later I reviewed all of my counts and they had all gone up so made sense. Still didn't calm down completely until after I received my PCR results though. 
08/2015 Initial PCR: 66.392%
12/2015 PCR: 1.573%
03/2016 PCR: 0.153%
06/2016 PCR: 0.070%
09/2016 PCR: 0.052%
12/2016 PCR: 0.036%
03/2017 PCR: 0.029%
06/2017 PCR: 0.028%
09/2017 PCR: 0.025%
12/2017 PCR: 0.018%
Taking Imatinib 400 mg
Also tagged with one or more of these keywords: PCR, Results
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