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Increase in BCR-ABL1


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#21 Jerry.s

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Posted 20 June 2016 - 05:57 PM

Ok I do have the international scale as well at home I'll post those tonight. I been thinking about getting a new onc for a
Long while now . I think I am gonna make the move .

#22 Jerry.s

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Posted 20 June 2016 - 06:30 PM

Ok I see it now under Clinical history it has last  (9;22) BCR-ABL 1 Fusion gene positive with a BCR-ABL1/ABL1 ratio of 1.87 and 100% on the IS on 10/02/2014

 

Clinical history it has last  (9;22) BCR-ABL 1 Fusion gene positive with a BCR-ABL1/ABL1 ratio of .064 and a value of 100% on the IS on 12/08/2014

 

 

Clinical history it has last  (9;22) BCR-ABL 1 Fusion gene positive with a BCR-ABL1/ABL1 ratio of .016 and a value of 1.72 pm on the IS on 3/16/2015

 

Clinical history it has last  (9;22) BCR-ABL 1 Fusion gene positive with a BCR-ABL1/ABL1 ratio of 0.011 and a value of .86% on the IS on 5/11/2015

 

Clinical history it has last  (9;22) BCR-ABL 1 Fusion gene positive with a BCR-ABL1/ABL1 ratio of .0053 and a value of 0.47% on the IS on 10/27/2015

 

Clinical history it has last  (9;22) BCR-ABL 1 Fusion gene positive with a BCR-ABL1/ABL1 ratio of 0.0068 and a value of 0.46% on the IS on 01/26/2016 

 

The last one for 6/1/2016 only has the IS scale 0.85%

 

 

I hope this helps

 

 

 

thank you all of chipping in

 

 

Jerry



#23 Buzzm1

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Posted 20 June 2016 - 07:03 PM

thanks Jerry.s, that clarifies the situation.  It's understandable that your onc wants you to consider changing your TKI.  After 20 months, you haven't reached MR3 (0.1% I.S.) yet.


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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#24 Trey

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Posted 20 June 2016 - 07:05 PM

Ignore the ratios and use the IS numbers.  The ratios ("raw" PCR numbers) must be multiplied by 100 to give the percentage number, and percentage is what must be used to relate to actual drug response.  You have achieved CCyR but not MMR, which is normal for your time on a TKI drug.  The last number did increase but is not significant in isolation.  A next PCR would show the trend line, so I would wait and see what it says.



#25 Jerry.s

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Posted 20 June 2016 - 08:23 PM

Awesome thanks Trey now I know how to read this crap

#26 kat73

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Posted 21 June 2016 - 11:04 AM

Right.  I assumed your posted numbers were reported as IS %s as well, and so was overly enthusiastic, sorry.  But this is still a good picture.  A lot of us didn't reach MR3 by 20 months - I got it at just under two years - and we've continued downward.  I did change from Gleevec to Sprycel at about your point, however, and the numbers shot down pretty dramatically.  They slowed as well, though, later.  I think the next couple of PCRs will give you more info for deciding if a change is called for.


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.


#27 Jerry.s

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Posted 01 July 2016 - 05:25 PM

Hello everyone . So my oncologist does recommend I switch to sprycel . He says because of my age 38 he strongly recommends I make the switch . He is ordering another pcr on my request but is taking the steps to move to the new drug .. I am 38 and I am very active with heavy juijitsu and I am afraid of some of the side effects . I am also think about a second opinion before I make the move from Gleevec to Spycel . What do you guys think ?

#28 Buzzm1

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Posted 01 July 2016 - 07:06 PM

Hello everyone . So my oncologist does recommend I switch to sprycel . He says because of my age 38 he strongly recommends I make the switch . He is ordering another pcr on my request but is taking the steps to move to the new drug .. I am 38 and I am very active with heavy juijitsu and I am afraid of some of the side effects . I am also think about a second opinion before I make the move from Gleevec to Spycel . What do you guys think ?

Jerry.s, the most common side-effect of Sprycel is pleural effusion, experienced by a good percentage of Sprycel users.  In that your last PCR was below 1%, it shouldn't be an imperative that you begin on the full dose of Sprycel 100mg.  Ask your onc to prescribe Sprycel 70mg to lessen your chance of pleural effusion.  Even at 70mg you may still experience pleural effusion; if so, reduce to 50mg.  In the meantime, you may want to summarize your PCR I.S. reading history in the Signature portion of your post to help eliminate redundant questions.   i.e.:

 

10/2014 100% Gleevec 400mg

03/2015 1.72%

05/2015 0.86%

10/2015 0.47%

01/2016 0.46%

06/2016 0.85%


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


#29 Jerry.s

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Posted 02 July 2016 - 12:35 AM

There are plenty reasons I don't want to switch should I make the change
10/2014 100% Gleevec 400mg
03/2015 1.72%
05/2015 0.86%
10/2015 0.47%
01/2016 0.46%
06/2016 0.85%

#30 chriskuo

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Posted 02 July 2016 - 02:59 AM

The trade-off between effectiveness and side effects works well for most people.  It is important to watch out for pleural effusion, which is common, but does not occur is most.  As mentioned, a lower dose of Sprycel may be sufficient.



#31 Buzzm1

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Posted 02 July 2016 - 08:41 AM

There are plenty reasons I don't want to switch should I make the change
10/2014 100% Gleevec 400mg
03/2015 1.72%
05/2015 0.86%
10/2015 0.47%
01/2016 0.46%
06/2016 0.85%

 

Jerry.s, after your retest, it's between you and your doctor. 


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





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