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Travel at Your Own Pace ... You'll Arrive

Iclusig Ponatinib Cancerversary

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#1 tinman1939

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Posted 01 June 2016 - 03:01 PM

Greetings CMLers -

 

As you can see below, my numbers on Iclusig, or Ponatinib, have been, well, slowly heading in the right general direction. I am by no means one of those who reach important milestones quickly. While I have been on Iclusig (30 mg/day) for two-plus years now, I still haven't been below 1% on my PCR test.
 

My hope is I will still get there by November, when I "celebrate" my 10-year cancerversary. Now that would be something worth celebrating!

 

Until then, slow goes the turtle. I am clearly traveling at my own pace. My hope is that I do, indeed, arrive!

 

Wayne

 

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

 

Date of Test                          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%



#2 thatguy

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Posted 01 June 2016 - 04:47 PM

Awesone Wayne, I was wondering how you were doing yesterday.
3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)

#3 hannibellemo

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Posted 02 June 2016 - 05:58 AM

That's fantastic news! 


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>


#4 Cathy

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Posted 02 June 2016 - 08:21 AM

Wayne ,

 

Your numbers look like mine did I'm at 6 years and just a few months ago I reached MMR just had my second test and still MMR so I'm pretty happy. You'll get there I bet by your 10 year !

 

Congrads and steady wins the race!

 

take care

 

cathy


Cathy

 

DX 5-2010  Started normal hydra then Gleevec for 9 months stopped working

Tasigna after 5 pills pancreatis  numbers jumped up quickly

Started Sprycel 100, 8-2010  for a 3 years went down to 50 mg numbers at one point really jumped up quickly

currently on 70 mg for last 2-3 years trying to get onc to reduce dose Numbers never stabilize never MMR till 4-2017 bearly and jump up and down in and out of MMR stayed MMR for 3 months then

After 6 years on sprycel fluid on both lungs, drained still have some fluid on lungs, and currently off drug 4 months now

numbers lower then ever go figure I've never been this low of a number 

last 2 tests .0686 and .0181 !!

 


#5 Melanie

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Posted 02 June 2016 - 06:48 PM

Fellow Turtle... You're getting there! Trending in the right direction is the important thing and I'm sure we'll be celebrating in November!
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)





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