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Difference in survival if PCR below 1.

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#1 Tucker1


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Posted 11 March 2016 - 09:19 AM

I would like some links to information about survival if my numbers stay below 1 (PCR) and don't return to the weak positive I once had. Does having really low numbers transfer to better outcomes?
Dx: 11/2004 intermediate risk 400 mg Gleevec
11/2005 partial cytogenetic response PCR 6.3
Clinical trial Sprycel 50mg 2x daily 12/05
11/06 PCR weak positive
10/07 PCR undetectable
12/08 PCR .017
Recurring colitis from Sprycel
11/09 Tasigna PCR .0075 200 mg 2x daily
11/10 PCR .078 400 mg 2x daily
11/11PCR weak positive
2/12 PCR. .15 decrease 200 mg 2x (QT prolongation)
Dosage changes until 2015 QT recurrent PCR .004
7/15 bosulif 500 mg
Liver toxicity discontinued bosulif PCR .025
Restart bosulif 100mg
12/15 PCR .714
Increase bosulif slowly
2/16 PCR.5
5/16 PCR .000 bosuitinib 400mg
8/16 PCR .027 Bosuitinib 300mg
10/16 PCR .117 Bosuitinib 300mg
1/17 PCR .243 Bousitinib 300mg
4/17 PCR .403

#2 Trey


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Posted 11 March 2016 - 01:24 PM

"CCyR is the golden standard during the TKI treatment and must be obtained within the first year (ideally at the six months of TKI regimen) and should be maintained during the long-term management of CML. CCyR is a significant barrier against the CML disease progression."


#3 Frogiegirl


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Posted 11 March 2016 - 02:07 PM

Ok Trey I'm having a brain fog moment....I think because I messed with my dose to much in the beginning of treatment I didn't hit the targets for response in the time frame they expect. I began treatment Nov 4th 2013. I haven't thought much about this until your post of guidelines responses.....will you please take a look at this and tell me where I fell short? Just out of curiousity. As always thanks Trey. Also got my potassium from wallshart's last night, here's to hoping it helps; )

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Diagnosed Oct 2013 Started 600mg of Tasigna  on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

 stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.

#4 hannibellemo


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Posted 12 March 2016 - 08:56 AM



Why do you think you have fallen short somewhere? You've been undetectable since June of last year and you were below MMR in less than one year.


Looks good to me!



"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>

#5 Trey


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Posted 12 March 2016 - 10:16 AM


Like Pat said, you did not fall short. 


Also for others to consider, these stats about response timeframe do not take into account the need for drug breaks due to low blood counts and many other factors.  They are just statisical averages, not facts.

#6 Melanie


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Posted 13 March 2016 - 12:51 AM

"Also for others to consider, these stats about response timeframe do not take into account the need for drug breaks due to low blood counts and many other factors. They are just statisical averages, not facts."

Happy to hear that...just saying, reading those response timeframes were a bit depressing for this old turtle. 😧🐢
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)

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