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#41 chriskuo

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Posted 14 August 2015 - 02:55 AM

I have never had my PCR tested more frequently than every 3 months.  If you do it monthly, a lot of the variation you will see is just noise.

 

At your level, you are not in any danger with having the PCR every 3 months and the standard blood tests monthly.

 

If you have been on Gleevec for 18 months, it may be time to switch to Sprycel.

At this point in time, you should not be in weeds dealing with constant second guessing on Gleevec.  



#42 Sneezy12

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Posted 14 August 2015 - 05:44 AM

Why does it take 40 days to receive the bcr/abl report? Regards, Frank

#43 rcase13

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Posted 14 August 2015 - 07:40 AM

Why does it take so long? I get my results in 4 or 5 days. And I thought that was a long time.

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!


#44 acl

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Posted 14 August 2015 - 09:01 AM

I have never had my PCR tested more frequently than every 3 months.  If you do it monthly, a lot of the variation you will see is just noise.

 

At your level, you are not in any danger with having the PCR every 3 months and the standard blood tests monthly.

 

If you have been on Gleevec for 18 months, it may be time to switch to Sprycel.

At this point in time, you should not be in weeds dealing with constant second guessing on Gleevec.  

Chriskuo,Sneezy12 & rcase13, Thank for your opinion it was appreciated. I have an appointment with the hematologist/oncologist next week. For as long as I am responding to Gleevec, I will continue to take it. I am not looking forward to switch to Sprycel and all it's side effects, I prefer to have Gleevec dosage increased a little. I will wait and see what the Dr. suggests next week, knowing him, there will be no increase and no change. I don't know why he orders monthly PCR tests, but I don't mind, I don't have to pay for it. Why does it take 40 days to receive BCR/ABL report, don't know, they don't tell me. Thank you!

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%

 

 

 

 


#45 chriskuo

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Posted 14 August 2015 - 09:54 AM

Your doctor seems to be operating differently than standard CML specialists. A second opinion could be a good idea at this time.
I went for a second opinion at an academic cancer center after 1 year when I was making slower than average progress.

#46 acl

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Posted 18 August 2015 - 09:44 AM

Let me say again that you are on a plateau, and also you are taking low dosage.  But you are still at about 2.5 log reduction, so there is no concern here.  But hypothetically, a loss of CCyR would be a bad sign.

Trey and Everyone, I had an appointment with the Hematologist yesterday. He is happy with my BCR-ABL IS-NCN 0.24%. I asked him that It's over one year and I have not achieved MMR. would an increase in the dose be appropriate? I should be at 0.1% by now and even lower. I hope that I reach MMR this year. He said that 400 mg. is for a man of my size, that I could die from liver toxicity or be blind, and he did not okay the increase in dosage. That's okay, I will continue taking the 300 mg. Gleevec, it will take longer to reach MMR, but hopefully I will.  I was hoping that he would allow 400 mg. two times per week. Thank you for the encouragement that I have received from you all.

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%

 

 

 

 


#47 Trey

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Posted 18 August 2015 - 09:56 AM

No issue with continuing on the current lower dosage path.  But the things your Onc said about the liver and blindness are weird.  Gleevec can increase some liver enzymes but they are not specific to the liver and are usually from muscle and bone turnover.  So what your Onc said about that is not accurate.  The blindness thingy is even more weird and has no basis in fact.



#48 acl

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Posted 18 August 2015 - 05:26 PM

No issue with continuing on the current lower dosage path.  But the things your Onc said about the liver and blindness are weird.  Gleevec can increase some liver enzymes but they are not specific to the liver and are usually from muscle and bone turnover.  So what your Onc said about that is not accurate.  The blindness thingy is even more weird and has no basis in fact.

Trey, thanks for responding. Last year I had a few eye bleeds, and maybe he does not want to mess up my liver. He is doing monthly bloods tests. He ordered PCR test again yesterday August 17th, in 40 days he will receive the report. Thank you very much for your opinion, I was blessed to have found this forum.

 

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%

 

 

 

 


#49 acl

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Posted 08 September 2015 - 10:11 PM

Trey, Scuba and Everyone, Received results from my Hematologist's nurse today My BCR/ABL test result from July 3, 2015 is 0.24% IS. I take 300mg Gleevec daily. Thank you.

acl

Hi Trey, Scuba And Everyone, The Hematologist's nurse phoned me today to let me know that my Q PCR result from August 17/15 is 0.22%. I was hoping that I would have a lower result. At my last appointment he told me don't be surprised if this PCR result is 0.45%.  I know that there is nothing for me to be concerned, but I really would like to reach 0.1% or less. My next appointment with him will be Sept. 21st. What questions should I ask him at my next appointment? I was diagnosed March 2014, and I take 300 mg. Imatinib. I have never taken the Brand name, it has always been the genetic. It's probably all the same. My Insurance only pays for genetic.Your opinion and comments are 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%

 

 

 

 


#50 scuba

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Posted 09 September 2015 - 06:23 AM

Hi Trey, Scuba And Everyone, The Hematologist's nurse phoned me today to let me know that my Q PCR result from August 17/15 is 0.22%. I was hoping that I would have a lower result. At my last appointment he told me don't be surprised if this PCR result is 0.45%.  I know that there is nothing for me to be concerned, but I really would like to reach 0.1% or less. My next appointment with him will be Sept. 21st. What questions should I ask him at my next appointment? I was diagnosed March 2014, and I take 300 mg. Imatinib. I have never taken the Brand name, it has always been the genetic. It's probably all the same. My Insurance only pays for genetic.Your opinion and comments are very much appreciated.

acl

 

Your PCR level is on a steady decline from 0.67% to 0.22% currently and on only 300mg Imatinib. You are trending in a good direction and could very well achieve MMR at next test or very close to it. Staying with your treatment course is reasonable. 


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#51 Buzzm1

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Posted 09 September 2015 - 08:26 AM

I take 300 mg. Imatinib. I have never taken the Brand name, it has always been the genetic. It's probably all the same. My Insurance only pays for genetic.Your opinion and comments are very much appreciated.

acl

Congratulations on your continued progress acl.  Just curious about the cost of the generic Imatinib you take and who the manufacturer is.  Imatinib is scheduled to go generic in the U.S. on 02/01/2016, produced by Sun Pharma, but the pricing of the generic is unknown at this time.

 

Novartis manages to push back competition to its leukemia drug in the U.S. http://on.wsj.com/1lCYBdg

 

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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

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#52 acl

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Posted 09 September 2015 - 08:34 AM

Your PCR level is on a steady decline from 0.67% to 0.22% currently and on only 300mg Imatinib. You are trending in a good direction and could very well achieve MMR at next test or very close to it. Staying with your treatment course is reasonable. 

Thanks Scuba!

 

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%

 

 

 

 


#53 acl

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Posted 09 September 2015 - 08:50 AM

Congratulations on your continued progress acl.  Just curious about the cost of the generic Imatinib you take and who the manufacturer is.  Imatinib is scheduled to go generic in the U.S. on 02/01/2016, produced by Sun Pharma, but the pricing is unknown at this time.

 

Novartis manages to push back competition to its leukemia drug in the U.S. http://on.wsj.com/1lCYBdg

 

Buzz

Hi Buzzm1, Thanks. The generic Imatinib that I take Is manufactured by W Actavis DIN 02397285, Apotex Inc. DIN 02355337 and Teva_Imatinib, DIN 02399814, 100 mg. X 284 tablets costs $1,864.58 Canadian currency. All bought at the same pharmacy, but they order from 3 different companies.

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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