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Popping in to say......... I finally hit MMR


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#1 HeatherZ

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Posted 01 February 2013 - 04:24 PM

March 23rd will mark my third cancerversary.  For the last year and a half my PCR numbers were flat at a 2 log reduction.  I was really frustrated and discouraged and my Oncologist seemed really against a drug change. At my last appt I asked him to consult with Dr. Druker to see if a change would be good.  Well, I had my bloodwork done last week and saw the Onc yesterday.  I was extremely happy to see a leading 0 (0.1 and some change) in my PCR number and log reduction of 3.27!   I never thought I would get to this point.  Needless to say I have decided to stay on Gleevec for the time being and hope I can hit PCRU. 

I have been staying away from here because I was so discouraged seeing everyone else announcing good news and feeling like I was making no progress against this monster.  I have missed everyone and have often thought about many of you but could not bring myself to the board since it seemed like I was in the minority with no good news to share.



#2 CallMeLucky

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Posted 01 February 2013 - 05:52 PM

Awesome, so glad you hit this point and it gives you some peace regarding your prognosis.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#3 HeatherZ

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Posted 01 February 2013 - 07:02 PM

It does give me some peace and some new encouragment.  I have not felt this encouraged since I got my first Fish negative over 2 years ago.



#4 Marnie

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Posted 01 February 2013 - 08:04 PM

Heather, congratulations!!  I know how you feel.  I have also been a turtle in this race, and I understand your frustration.  You feel happy for others reaching the landmarks, but you also feel a bit of resentment and frustration.  Been there.  So happy for you.  Glad that you are feeling encouraged. 

Marnie



#5 janne

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Posted 01 February 2013 - 09:24 PM

Congratulations Heather !!! Great news for you !!


Dx'd: 8/2008. Started Gleevec 400 mg 11/08. 

Drug break 2011.

Started Tasigna 4/11 450 mg.

Reduction to 300 mg Tasigna 1/2012.

PCRU 9/2012.

12/2012 Detectable.

PCRU 4/2013 through 3/2015. (Reduced to 150 mg 7/2014)

12/2015  ? slightly detectable at probably less than 0.01% per Mayo Clinic.

4/2016 PCRU. Still at 150 mg Tasigna.

 

CESSATION: stopped treatment 7/20/2017. 

9/6/2017:  barely detectable at 0.01%. 

12/11/2017: PCR at 0.09% (did not do the monthly PCR testing.) 

12/18/2017: Inevitable call from Onc. Started back on Tasigna at 150 mg. (Considering Sprycel low dose.) 


#6 Susan61

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Posted 02 February 2013 - 12:00 AM

Congratulations Heather.  I was slow at first on the Gleevec.  I started my Gleevec in 2000, and did not get to PCRU till 2002.  Just had my PCR test recently, and hit my 10th year of being PCRU.  Hope that helps you.  Just stick with your Gleevec, and you will see some results soon I am sure.

Do not stay away.  Come on and share.  No matter what you share can help someone else who might not even be doing as well as you.  You have a bunch of friends here at all times no matter what.

Susan 61



#7 hannibellemo

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Posted 02 February 2013 - 09:47 AM

Congratulations, Heather! I know the turtle feeling. I'm hoping to get back down to MMR soon after reducing my Sprycel dosage to 50mg. 9 months ago after pleural effusion.

Slow and steady whens the race!

Pat


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>


#8 Tedsey

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Posted 02 February 2013 - 05:57 PM

Heather,

I totally know how you felt.  I am so happy to hear the good news!  I was dx a little before you and my story was similar.  However, I had to have a drug change.  Well, hope you are breathing a huge sigh of relief.  After being a slug for so long, achieving MMR feels like a major accomplishment.  Although not 0, it sure feels like it when PCR after PCR brings such disappointment.  As we all know very well that there are no guarantees in life for anything, there is nothing like the hope that this milestone (MMR) gives us.  Wishing you a short wait til the big zero comes along.

Teds



#9 Pin

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Posted 03 February 2013 - 05:40 PM

Yay!!! Congratulations Thanks for sharing your journey with us!


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14





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