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PCRU

Started by soundoff , Dec 18 2015 09:23 PM

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8 replies to this topic

#1 soundoff

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Posted 18 December 2015 - 09:23 PM

I got the news today I'm PCRU again.
I had a positive but unquantifiable in October.
My DR ordered a retest after 4 week and it came back PCRU. 2 PCRU'S in the same year, seems to me I'm actually PCRU. I wasn't sure especially afters getting another positive unquantifiable.
Cheers and Merry Xmas to all!

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#2 kat73

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Posted 19 December 2015 - 11:15 AM

Oh, Happy, Happy Christmas!

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.

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#3 SUE

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Posted 19 December 2015 - 11:17 AM

Congratulations, soundoff.

Sue

Dx April 2013, FISH 62, BMB not enough for PCR test; put on Gleevec 400;

August 2013, FISH 8.7;

Oct 2013, FISH 5.6

Stopped Gleevec Nov 2013 for 6 weeks due to terrible side effects; Jan 2014 started Sprycel 50mg;

Feb, 2014 PCR 6.8

May,2014 PCR .149

Aug, 2014 PCR .015

Nov. 2014 PCRU

March, 2016 went down to 40mg Sprycel

Oct. 2016 stopped Sprycel for a couple weeks due to concern about shortness of breath. Echo showed mild PAH.

Nov 1 2016 resumed Sprycel 20 mg daily

Dec 2016 PCRU

March 2017 PCR 0.020

May 2017 PCRU

Sept 2017 PCRU

Dec 2017 PCRU

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#4 Buzzm1

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LocationSilicon Valley

Posted 19 December 2015 - 12:03 PM

Congratulations soundoff. my own PCR bounced around a few times between undetectable and detectable but too low to quantify before stabilizing at PCRU; Trey has mentioned this is not at all unusual.

Merry Christmas to you.

May the New Year bring you continued tidings of great joy.

Buzz

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

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#5 story

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Posted 19 December 2015 - 10:24 PM

Congrats soundoff, that is wonderful!

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#6 mdszj

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Posted 20 December 2015 - 11:37 AM

soundoff - very nice, i know it lowers your mental burden just a bit more when you hit pcru. hopefully you will have many more pcru results!

dx cml 7/2012; 100 mg sprycel; splenectomy 9/2012; reached prcu 10/2013; dx smoldering myeloma 1/2015; 80 mg sprycel 12/2015; 50 mg sprycel 7/13/16; discontinued sprycel 11/15/16

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#7 Melanie

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Posted 20 December 2015 - 10:48 PM

Congrats! Great way to end the year and begin a new one!

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)