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Mayo Clinic BCR/ABL,PCRp210 Quan Final Diagnosis Question

Started by Cliffee , Feb 04 2016 12:56 PM

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7 replies to this topic

#1 Cliffee

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Posted 04 February 2016 - 12:56 PM

HI,

Things have been going well for me since switching from Gleevac to Tasigna 600mg/day.

I had been floating around MMR for almost three years on Gleevac 600/day. After going to Tasigna I was MMR in three months and numbers kept going down. I have had absolutely no side effects at all that I'm aware of other than some risen Liver numbers which have now subsided.

The last two tests at Mayo results have been reported as:

"Peripheral blood, BCR/ABL1 mRNA level analysis (p210 fusion form): Positive. BCR/ABL1 p210 mRNA transcripts were detected at a very low quantitative level (<0.01% of total ABL1 (%BCR/ABL1(p210):ABL1)"

I would like to know the exact number, not this rounded number <.01?

Has anyone else run into this and is it justified for me to complain about it?

Thanks In Advance

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#2 rcase13

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LocationCharlotte, NC

Posted 04 February 2016 - 04:18 PM

This is where I am. 0.01% my lab won't report any lower even though I'm told by my doctor that they can test to MR5.0 now.

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg

04/08/2015 0.01% Tasigna 600mg

07/01/2015 0.01% Tasigna 600mg

10/05/2015 0.02% Tasigna 600mg

01/04/2016 0.01% Tasigna 600mg

04/04/2016 PCRU Tasigna 600mg

07/18/2016 PCRU Tasigna 600mg

10/12/2016 PCRU Tasigna 600mg

01/09/2017 PCRU Tasigna 600mg

04/12/2017 PCRU Tasigna 600mg

10/16/2017 PCRU Tasigna 600mg

01/15/2018 PCRU Tasigna 600mg

Cancer Sucks!

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#3 Trey

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Posted 04 February 2016 - 07:31 PM

They cut off reporting at -4 log, so there probably is no "number". The software likely cuts off and reports "below the level of quantitation" or something like that. But it is still detectable. So it could be just below -4 log or it could be "fumes" level.

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#4 Cliffee

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Posted 05 February 2016 - 12:17 AM

Understood.

Thanks for all the help!

C

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#5 hannibellemo

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Posted 05 February 2016 - 06:36 AM

C,

I just had that discussion with my onc on Tuesday; my blood is also sent to Mayo for testing. My last two just came back with "negative" and not much else. He said IS is pretty much out the window with this type of reporting. Bummer, I was looking forward to the day I might see a whole bunch of .zeroes!

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>

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#6 Cliffee

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Posted 05 February 2016 - 02:15 PM

C,

I just had that discussion with my onc on Tuesday; my blood is also sent to Mayo for testing. My last two just came back with "negative" and not much else. He said IS is pretty much out the window with this type of reporting. Bummer, I was looking forward to the day I might see a whole bunch of .zeroes!

I would love to hear "Negative". Hopefully, that's the next stop!

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#7 Buzzm1

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Posted 05 February 2016 - 02:38 PM

I was looking forward to the day I might see a whole bunch of .zeroes!

Pat, here you go: Your PCR result 0.00000 nothing, nada, zero, negatory, undetectable

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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#8 hannibellemo

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LocationNorth Central Iowa

Posted 05 February 2016 - 06:23 PM

Thanks, Buzz!

Cliffee, you'll get there, and if you don't, that's ok, too. Honestly, the only reason I care so much about the zeroes is because I'm so darn competitive!

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>