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BCR-ABL report.


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#21 acl

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Posted 22 September 2016 - 08:14 PM

acl, glad to hear that you will receive your PCR BCR-ABL result much sooner than 52 days ... it pays to be assertive ... we'll be looking forward to your result.

Buzzm1, rcase13 and Everyone, I received my PCR result from September 12/16, it is 0.12%. It was 0.7% went up to 0.17%, but now it is 0.12%. Thank you all for the support!!

acl


Diagnosed March 2014

Imatinib 400 mg. Summer 2014, Imatinib 300 mg.

 

% BCR-ABL

IS-NCN

 

06/01/16     0.18%

24/02/16     0.11%

23/03/16     0.13%

12/05/16     0.07%

13/07/16     0.17%

12/09/16     0.12%

21/19/16     0.15%

23/11/16     0.09%

20/12/16     0.11%

19/01/17     0.07%

21/02/17     0.07%

20/03/17     0.06%

20/04/17     0.06%

20/05/17     0.07%

20/06/17     0.06%

23/08/17     0.08%

22/12/17     0.04%

 

 

 

 


#22 rcase13

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Posted 22 September 2016 - 09:12 PM

That is good to hear, nothing like the relief of getting a PCR result that is lower than the one before.

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!


#23 Buzzm1

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Posted 22 September 2016 - 09:40 PM

Dec. 2014  0.72%

Feb. 2015  0.67%

Apr.  2015  0.42%

May. 2015  0.45%

Jun.  2015  0.35%

Jul.   2015  0.24%

Aug. 2015  0.22%

Sep. 2015  0.18%

Nov. 2015  0.18%

Jan. 2016   0.18%

Feb. 2016  0.11%

Mar. 2016  0.13%

May 2016  0.07%

Jul   2016  0.17%

Sep 2016  0.12%

 

 

 

Buzzm1, rcase13 and Everyone, I received my PCR result from September 12/16, it is 0.12%. It was 0.07% went up to 0.17%, but now it is 0.12%. Thank you all for the support!!

acl

acl, a 10 day turnaround on your PCR result is a vast improvement over 52 days but you are still wrestling with the same problem, a very slow response; it's between you and your oncologist whether you switch to a lowered dose of Sprycel  ... 


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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#24 kat73

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Posted 23 September 2016 - 11:09 AM

I would not characterize this as a slow response.  I would, however, question why 15 PCRs in 21 months?!  That's twice as many as called for, they add no useful information, they cause unnecessary anxiety.  NCCN guidelines seemingly are not being followed by your onc.


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.


#25 acl

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Posted 23 September 2016 - 08:13 PM

acl, a 10 day turnaround on your PCR result is a vast improvement over 52 days but you are still wrestling with the same problem, a very slow response; it's between you and your oncologist whether you switch to a lowered dose of Sprycel  ... 

Buzzm1, Thank you for your opinion.  A 10 day turnaround on my PCR result is a vast improvement over 52 days.  I phoned the hematologist's office two times, the second time I told the nurse that my nephew said that my Doctor could phone. That's when the nurse phoned to get the results. they know that my nephew is an Optometrist, it worked. I am not happy with the slow response, but I am sure that the Hematologist is not going to switch my meds to Sprycel, unless I request the switch. Sprycel has so many side effects, I think that I will wait for another two PCR results and If I do not reach MMR, I will have to switch.  I am eating foods that are very high in antioxidants and I drink Goji Juice. One litre of Goji Juice costs $42.00. I have an appointment with the Hematologist October 19th, I am sure he is going to order another PCR test. I am hoping that the antioxidants are going to help. We shall see. Thank you for your suggestion it was very much appreciated.

acl


Diagnosed March 2014

Imatinib 400 mg. Summer 2014, Imatinib 300 mg.

 

% BCR-ABL

IS-NCN

 

06/01/16     0.18%

24/02/16     0.11%

23/03/16     0.13%

12/05/16     0.07%

13/07/16     0.17%

12/09/16     0.12%

21/19/16     0.15%

23/11/16     0.09%

20/12/16     0.11%

19/01/17     0.07%

21/02/17     0.07%

20/03/17     0.06%

20/04/17     0.06%

20/05/17     0.07%

20/06/17     0.06%

23/08/17     0.08%

22/12/17     0.04%

 

 

 

 


#26 hannibellemo

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Posted 23 September 2016 - 08:48 PM

I want to correct a previous post about the frequency of PAH with TKIs. It is 0.45%, not 5% as previously stated. As PhilB would say, "Not very good with maths, are you?" Evidently, especially decimals. So it is a rare side effect!


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>


#27 acl

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Posted 24 September 2016 - 04:31 PM

I want to correct a previous post about the frequency of PAH with TKIs. It is 0.45%, not 5% as previously stated. As PhilB would say, "Not very good with maths, are you?" Evidently, especially decimals. So it is a rare side effect!

hannibellemo, Thank you for the info. All TKI's have side effects. a twelve year old boy and a 61 year old man were taking Gleevec and are blind. I will keep you informed after my appointment on the 19th.

 

acl


Diagnosed March 2014

Imatinib 400 mg. Summer 2014, Imatinib 300 mg.

 

% BCR-ABL

IS-NCN

 

06/01/16     0.18%

24/02/16     0.11%

23/03/16     0.13%

12/05/16     0.07%

13/07/16     0.17%

12/09/16     0.12%

21/19/16     0.15%

23/11/16     0.09%

20/12/16     0.11%

19/01/17     0.07%

21/02/17     0.07%

20/03/17     0.06%

20/04/17     0.06%

20/05/17     0.07%

20/06/17     0.06%

23/08/17     0.08%

22/12/17     0.04%

 

 

 

 





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