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PCRU!!!!

Started by hannibellemo , Feb 04 2015 03:55 PM

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31 replies to this topic

#1 hannibellemo

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Posted 04 February 2015 - 03:55 PM

Ok, I know I have said in the past that my goal was not PCRU, but damn it feels good to look at this report and read, "No BCR/ABL p210 MRNA transcripts were detected"! This is after nearly 3 years on 50mg. Sprycel.

Turtles Unite!

P.S. Trey this sample was sent in on Friday and I did not receive the results back until yesterday (I was out of town until today or believe me you all would have heard sooner), so, as you said, maybe the fact the test was being done so quickly did not work in my favor.

I wanted to add that Mayo-Rochester does testing every weekday and they had my sample on Friday, so I really don't know when the test was actually done, I guess. I just assume they held it over the weekend.

Edited by hannibellemo, 04 February 2015 - 04:20 PM.

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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#2 Buzzm1

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Posted 04 February 2015 - 03:58 PM

My heartiest congratulations Pat ... it has been a long time coming.

CELEBRATE

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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#3 Jamie2015

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Posted 04 February 2015 - 04:03 PM

Congratulations. So happy to read such happy news!!!

ENJOY IT.

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#4 mlk210

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Posted 04 February 2015 - 04:11 PM

Congratulations Pat!!! CELEBRATE!!!

7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)

8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)

1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)

3/16 .014 after a wk w/o meds

4/16 Started 400mg Gleevec

4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable

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#5 simone4

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Posted 04 February 2015 - 04:32 PM

Yeah, Yeah, Yeah. You need to go to our favorite place to celebrate and do some sailing.

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#6 Marnie

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Posted 04 February 2015 - 06:13 PM

Yippee!! It's amazing how good that feels! Celebrate!

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#7 Ray99

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Posted 04 February 2015 - 06:27 PM

Very good news indeed!! Congratulation.
Is this a quantitative or qualitative PCR? Is there any numerical value in the test results, such as 0.000%?

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#8 Sneezy12

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Posted 04 February 2015 - 06:51 PM

The Mayo Clinic Lab report will have the time the test was run.

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#9 Trey

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Posted 04 February 2015 - 08:12 PM

Very happy for you -- despite all your fine print.

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#10 SUE

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Posted 04 February 2015 - 08:55 PM

Great news, Pat. Congratulations

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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#11 hannibellemo

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Posted 04 February 2015 - 10:08 PM

I keep thinking I should be able to click a "Like" button under all your comments. Thanks for the well wishes!

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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#12 CallMeLucky

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Posted 04 February 2015 - 10:45 PM

Yay!

Date - Lab - Scale - Drug - Dosage MG - PCR

2010/Jul - MSKCC - Non-IS - Gleevec - 400 - 1.2%

2010/Oct - MSKCC - Non-IS - Gleevec - 400 - 0.25%

2010/Dec - MSKCC - Non-IS - Gleevec - 400 - 0.367%

2011/Mar - MSKCC - Non-IS - Gleevec - 400 - 0.0081%

2011/Jun - MSKCC - Non-IS - Gleevec - 400 - 0%

2011/Sep - MSKCC - Non-IS - Gleevec - 400 - 0.00084%

2011/Dec - MSKCC - Non-IS - Gleevec - 400 - 0%

2012/Mar - MSKCC - Non-IS - Gleevec - 400 - 0.004%

2012/Jun - MSKCC - Non-IS - Gleevec - 400 - 0%

2012/Sep - MSKCC - Non-IS - Gleevec - 400 - 0%

2012/Dec - MSKCC - Non-IS - Sprycel - 100 - 0%

2013/Jan - Quest - IS - Sprycel - 50-60-70 - 0%

2013/Mar - Quest - IS - Sprycel - 60-70 - 0%

2013/Apr - CUMC - Non-IS - Sprycel - 50 - 0.036%

2013/May - CUMC - Non-IS - Sprycel - 50 - 0.046%

2013/Jun - Genoptix - IS - Sprycel - 50 - 0.0239%

2013/Jul - Genoptix - IS - Sprycel - 70 - 0.0192%

2013/Jul - Genoptix - IS - Sprycel - 70 - 0.0034%

2013/Oct - Genoptix - IS - Sprycel - 70 - 0.0054%

2014/Jan - Genoptix - IS - Sprycel - 70 - 0.0093%

2014/Mar - Genoptix - IS - Sprycel - 100 - 0.013%

2014/Apr - Genoptix - IS - Sprycel - 100 - 0.0048%

2014/Jul - Genoptix - IS - Sprycel - 100 - 0%

2014/Nov - Genoptix - IS - Sprycel - 100 - 0.047%

2014/Dec - Genoptix - IS - Sprycel - 100 - 0%

2015/Mar - Genoptix - IS - Sprycel - 100 - 0%

2015/Jun - Genoptix - IS - Sprycel - 100 - 0%

2015/Sep - Genoptix - IS - Sprycel - 100 - 0%

2015/Dec - Genoptix - IS - Sprycel - 100 - 0%

2016/Mar - Genoptix - IS - Sprycel - 100 - 0.0228%

2016/Jun - Genoptix - IS - Sprycel - 100 - 0%

2016/Sep - Genoptix - IS - Sprycel - 100 - 0%

2016/Dec - Genoptix - IS - Sprycel - 100 - 0%

2017/Mar - Genoptix - IS - Sprycel - 100 - 0%

2017/Jun - Genoptix - IS - Sprycel - 100 - 0%

2017/Sep - Genoptix - IS - Sprycel - 100 - 0%

2017/Dec - Genoptix - IS - Sprycel - 100 - 0%

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#13 Billie Murawski

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Posted 05 February 2015 - 01:05 AM

Congratulations Pat,

I'm so happy for you it sure has been a long time coming, now you're turning from a tortoise into a hare YEAH!!!!!

I'm going to drink some toast for you right now. Love Billie

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#14 Frogiegirl

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Posted 05 February 2015 - 08:30 AM

OHHHHHH HAAAAAAAAPYYY DAAAAAAAAY!!!! :wub: You deserve this! its been a long time coming! I like Trey's comment on the fine print! just sit back and take it ALLLLLL IN!!

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.

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#15 Cathy

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Posted 05 February 2015 - 09:16 AM

Congradulations! Long time coming! Enjoy ! Celebrate!

Cathy

DX 5-2010 Started normal hydra then Gleevec for 9 months stopped working

Tasigna after 5 pills pancreatis numbers jumped up quickly

Started Sprycel 100, 8-2010 for a 3 years went down to 50 mg numbers at one point really jumped up quickly

currently on 70 mg for last 2-3 years trying to get onc to reduce dose Numbers never stabilize never MMR till 4-2017 bearly and jump up and down in and out of MMR stayed MMR for 3 months then

After 6 years on sprycel fluid on both lungs, drained still have some fluid on lungs, and currently off drug 4 months now

numbers lower then ever go figure I've never been this low of a number

last 2 tests .0686 and .0181 !!

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#16 pammartin

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Posted 05 February 2015 - 02:12 PM

Great news Pat. Turtles are winners.

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#17 August1

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Posted 05 February 2015 - 03:13 PM

That is awesome. Great news and congratulations! An inspiration for all of us turtles.

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#18 Melanie

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Posted 05 February 2015 - 04:37 PM

Congrats Pat! Slow but sure wins the race...such a great ispiration to us in the turtle family. Celebrate!

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)