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The Cardiac Kid Returns

Heart Stents CML Iclusig PCR

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#1 tinman1939

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Posted 07 March 2017 - 09:04 AM

For the first time since I started Iclusig, or Ponatinib, nearly three years ago, I have surpassed a milestone. My latest PCR test result was under 1% (0.56% to be exact). Fluke? Progress? Who knows. It is certainly not a trend yet, but I will take any good news I can get at this point.

 

Some of you may recall I was diagnosed with a couple of blocked arteries on the same day in November 2016 that I celebrated my 10-year cancerversary. I know, some celebration. I never expected to get a PCR test as favorable as the one this month, given my heart issues.

 

Being the inquisitive one, I wonder what prompted this improved response. Was it the clearing of those arteries with stents in November and December which resulted in improved blood flow that somehow aided the absorption of the Iclusig? Was it my improved nutrition, including eliminating any alcohol other than an occasional sip of red wine? Was it my cardiac rehabilitation program, in which I exercise vigorously a couple of times of week (versus my historically sedentary lifestyle)? Or none of the above?

 

I am curious as to what Trey and Scuba think (as well as the rest of you).

 

Perplexed (but happy) in Dallas.

 

(Started Iclusig, or Ponatinib, on April 7, 2014)

Wayne's Progress                          BCR/ABL (IS Scale)

April 2, 2014                                       56.6 %

July 3, 2014                                        16.3 %

Oct. 3, 2014                                        54.9 %

Oct. 17, 2014                                      10.7 %

Nov. 24, 2014                                      12.95 %

Feb. 17, 2015                                      10.85 %

April 30, 2015                                       8.37 %

Aug. 11, 2015                                       1.46 %

Nov. 16, 2015                                       4.03 %

Feb. 18, 2016                                       3.84%

May 26, 2016                                       3.11%

Aug. 25, 2016                                       3.53%

Nov. 29, 2016                                       4.35%

March 1, 2017                                       0.56%



#2 Trey

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Posted 07 March 2017 - 11:07 AM

The other things you did might have had an impact, but otherwise it looks like a fairly normal turtle progress with a couple blips.  Not trying to drive you back to drinking while eating cheetos on the couch or anything, just too hard to figure out such things when there is so little data.  Overall encouraging, and I hope the current downward trend holds, but I would also be prepared in case of an uptick on the next one.



#3 xxgirl

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Posted 07 March 2017 - 11:08 AM

Congratulations Wayne!

 

That's monumental!



#4 kat73

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Posted 07 March 2017 - 12:29 PM

So happy for you on ALL the improvements you've made and had in your life, including this one!  Sorry that it had to be a cardiac scare to shake things up, but I'm not surprised that your hard work on "reforms" in that area have helped in the CML one.  You're right - it's a mystery - but I do believe that it helped in some way we don't understand. 


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.


#5 Marnie

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Posted 07 March 2017 - 07:24 PM

The other things you did might have had an impact, but otherwise it looks like a fairly normal turtle progress with a couple blips.  Not trying to drive you back to drinking while eating cheetos on the couch or anything, just too hard to figure out such things when there is so little data.  Overall encouraging, and I hope the current downward trend holds, but I would also be prepared in case of an uptick on the next one.

Mmmmm. . . wine and cheetos!!



#6 tiredblood

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Posted 07 March 2017 - 11:19 PM

Looks good to me.

#7 Buzzm1

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Posted 07 March 2017 - 11:34 PM

Wayne, congrats, hoping you will see continued improvement.  Thanks for posting your history.  


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


#8 Melanie

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Posted 08 March 2017 - 12:12 AM

Wayne, so happy for you!
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)

#9 M.A.

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Posted 08 March 2017 - 02:17 AM

It is not easy to make those lifestyle changes tinman. That effort will pay dividends for your health. I hope you are feeling better and that your BCR ABL continues to behave itself! 


CML diagnosed April 2016

Type One Diabetes diagnosed April 1980 (age 12)

 

BCR-ABL (IS)

46.77  April 2016

3.568  July 2016  

0.076  Oct 2016

0.016  Feb 2017

0.0079  April 2017

0.014  July 2017

0.019  Sept 2017

0.011  Nov 2017

 

Sprycel

100mg April 29 - September 22

75mg  September 23 - October 28

50mg October 29 2016 to present


#10 pammartin

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Posted 08 March 2017 - 09:13 AM

Mmmmm. . . wine and cheetos!!

Blech 







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