9 replies to this topic

[tinman1939]

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%

[Trey]

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.

[xxgirl]

Congratulations Wayne!

 

That's monumental!

[kat73]

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. 

[Marnie]

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!!

[tiredblood]

Looks good to me.

[Buzzm1]

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

[Melanie]

Wayne, so happy for you!

[M.A.]

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! 

[pammartin]

Mmmmm. . . wine and cheetos!!

Blech