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18 & 19 Month PCR : What would you do?


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#1 LivingWellWithCML

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Posted 15 November 2012 - 07:06 PM

Hi everyone,

I'm curious what other CMLers would do in my situation.  Short story - I saw an upward trend in PCR on Gleevec 400mg, freaked out, pressed for a 6-week re-test, and it came back with the exact same result.  Right at the edge of MMR.  Ugh -- so close, yet so far.  Trend since starting treatment in April 2011:

Non - IS

  • July 2011 (3 months): 1.5%
  • Oct 2011 (6 months): 0.16%
  • Jan 2012 (9 months): 0.02%
  • April 2012 (12 months): PCR-u

IS

  • July 2012 (15 months): 0.043%
  • Sept 2012 (~ 18 months): 0.124%
  • Nov 2012 (~ 19 months): 0.125%

FISH was negative, so I'm CCyR and get to live for now.  Doc has zero concern, says I'm doing great, stay the course on 400mg, and next PCR in April 2013.  I have zero side effects from the dosage (that I can tell), so Gleevec is definitely playing well with me from that standpoint.  But it's only able to beat down my CML to the edge of MMR apparently, despite flirting with a deeper log reduction initially.  But CCyR is the primary indicator for survival - so I get that.

Just curious - what would others do in my situation?  Stay the course and forget about it?  Request for 600mg upgrade, since I haven't had tough side effects and see if I can beat it down further?  Switch TKIs and surprise my CML and try to beat it down further that way?  Stop drinking wine (not an option )?  I feel and look perfectly healthy, so it's still mind boggling that this nasty CML thing is lurking inside me...

Thanks for any input -


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#2 Trey

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Posted 15 November 2012 - 08:21 PM

You would not need to do anything.  But then you would just keep fretting about it.  So since you must do something for the sake of sanity, I would try 600mg Gleevec.  You are very fortunate to not have side effects, so I would personally not mess that up by switching drugs since you are nearly MMR. 



#3 Ray99

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Posted 15 November 2012 - 08:36 PM

Dan,

    I am in a similar situation as you are.  My 4 month PCR is 0.23%IS and 7 month PCR is 0.33%IS, a slight uptick.  So close to MMR, but yet not reaching it.  My Onc would like to see the test in three month and decide whether to switch drug.  I asked for 6 week PCR and he said that it is not necessary since the reading would not change significantly.  I hope he is right.

    I received a couple of encouraging and valuable comments from the board member here that greatly reduce my anxiety.  I am thinking that I may willing to wait for another  three more months if the next PCR result is flat or even slight uptick to give the drug more time to work.  Not quite sure that it is the right thing to do.  I am currently on Tasigna 600 mg and the Onc would like to switch to Sprycel if necessary.



#4 Pin

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Posted 15 November 2012 - 10:25 PM

I agree with Trey - I feel you are the same as me and we are not as comfortable with 'watch and wait' - I would increase if I were you (if it works financially). Since you had very few side effects, and still other drug options, you could either up the dosage to 600 now, or wait to see what the next one says and then increase if necessary. I think you are stable MMR already, which we all know is objectively good but it is also important how you feel, our stress is not good for us either. I hope you can work out a plan soon, it always helps me to have some sort of plan - just frees up my mind [to worry about other things ;)]. All the best and keep us posted on what you decide :) Thanks for your support of me too! Pin xxx.


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


#5 LivingWellWithCML

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Posted 16 November 2012 - 11:45 AM

Thanks all.  I actually think I'm going to stay the course until April, because I want to focus more on my ankle rehab than potential 600mg side effects.  But I am asking the doc about 600mg to see what he says/thinks.  Thanks for your perspective and will keep everyone updated.


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#6 TeddyB

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Posted 16 November 2012 - 04:42 PM

For gods sake Dan, dont give up the wine!

I stopped drinking my daily glass of wine for 10 days now, just to try and see how i felt and i dont recommend it. Been sleeping much worse and having more anxiety issues.

Took a glass of wine again tonight, and i can already feel the calm setting in, and happy with the thought that tonight im probably going to get a good nights sleep.

Cheers!

PS: I dont recommend wine for everyone, but for Dan and me i do, at least in very moderate amounts

Teddy.



#7 CallMeLucky

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Posted 17 November 2012 - 09:58 AM

Although difficult, you should stay the course.  IMHO


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%
 

 


#8 LivingWellWithCML

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Posted 17 November 2012 - 07:38 PM

Yup, thanks Gary - that's the plan.  I pinged the doc about it and he basically told me to go away and enjoy the holidays.  So if I want a dosage increase or TKI change, I'll probably have to find another onc.


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#9 Trey

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Posted 17 November 2012 - 10:12 PM

Then increase your wine dosage to 600ml.



#10 Pin

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Posted 17 November 2012 - 11:28 PM

Pin likes this.


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


#11 TeddyB

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Posted 18 November 2012 - 06:52 AM

Good advice Trey



#12 LivingWellWithCML

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Posted 18 November 2012 - 07:58 AM

ha!  Yup - I'm filling that prescription in time for Thanksgiving.  Thanks all -


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg





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