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Plateau - hovering around MMR

Started by blueheron , Feb 25 2016 04:00 PM

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7 replies to this topic

#1 blueheron

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Posted 25 February 2016 - 04:00 PM

Just got my latest PCR - trend is flat but up slightly to 0.102

prev results were 0.091 Oct/2015 and 0.089 Jun/2015

DXed 6/2013

I know these are all within the margin of error with each other and are pretty much considered equal, but nevertheless, the trend is up, which I don't like at all! Plus I lost my MMR!

On Sprycel 100mg

Any other Plateau People out there want to commiserate?

DX 6/2013

Sprycel 100mg

CCR 3/2015

MMR 2/2016

<.01 IS 10/16 hopkins didn't report actual percentage

.007 IS 6/2017

<.01 12/2017 again no actual percentage but didn't see the report myself yet

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#2 kat73

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LocationWashington, DC area

Posted 25 February 2016 - 06:27 PM

MMR is .1 so you are fine. You are at MMR plus 2 one thousandth of a . . . thingie. ^_^

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 blueheron

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Posted 25 February 2016 - 06:57 PM

Ha! you're right! Thanks Kat!

DX 6/2013

Sprycel 100mg

CCR 3/2015

MMR 2/2016

<.01 IS 10/16 hopkins didn't report actual percentage

.007 IS 6/2017

<.01 12/2017 again no actual percentage but didn't see the report myself yet

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#4 Trey

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LocationSan Antonio, Texas

Posted 25 February 2016 - 09:07 PM

Flatlined at MMR is not so bad. Try not to measure with a micrometer the thingy which was cut with a meat axe.

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#5 blueheron

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Posted 25 February 2016 - 11:00 PM

True, thanks Trey!

DX 6/2013

Sprycel 100mg

CCR 3/2015

MMR 2/2016

<.01 IS 10/16 hopkins didn't report actual percentage

.007 IS 6/2017

<.01 12/2017 again no actual percentage but didn't see the report myself yet

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#6 JoshLee

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Posted 26 February 2016 - 12:37 PM

I was DX'd in December 2010 and for YEARS lived with levels around .9 IS and only within the past two years have I crept down to .1 or MMR. If your numbers aren't spiking you're good. It's hard to rap your head around, but stay the course!

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#7 Melanie

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LocationArizona

Posted 26 February 2016 - 01:39 PM

Congrats and don't worry about the thingy! The important number is the .1. Good and stable.

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)