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PCR / Tasigna / Slow Progression


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#1 JohnW

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Posted 15 December 2014 - 01:51 PM

Hi, folks.

 

New here, although not with a new CML diagnosis.  I've been on Tasigna since my initial DX.

 

I am very concerned with my progress.  It is my understanding that if one is < 1% on the International Scale, a complete cytogenetic response (CCyR) had been achieved.  Is this correct?

 

Regardless of that, my PCR results seem to indicate that I am levelling off as far as response to the medication I am currently taking.  I've included my results below:

 

February 2013 - Initial DX

 

PCR

08/22/2013         3.3917
11/21/2013         1.3268
02/20/2014         0.9151
05/22/2014         0.8661
09/29/2014         0.8553

 

This is troubling to me.  I feel as though I am far behind the curve as I see people reaching MMR, or even CMR, within a year of using their prescribed TKI, and quite honestly, it is scaring the crap out of me.  I am seeing my oncologist this Wednesday for more blood work.

 

Is this truly concerning or am I blowing this out of proportion?

 

On an aside, when I was diagnosed, and probably for a good year after, I was generally okay with it - the diagnosis, the medication, etc.  However, over time, I feel like it's consuming my thoughts more and more - and brutally so during the days before an appointment, to the point where I really start thinking I need to speak with a psychiatrist or something...   sometimes I'm just at a complete loss.

 

Glad I did finally create an account here tho - been reading the forums for quite a while now.

 

Thanks,

John



#2 CallMeLucky

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Posted 15 December 2014 - 02:34 PM

I was speaking with someone about something similar today with regard to my own situation.
You want optimal response for the long game which means the better your response the better your odds of keeping things under control for the longest amount of time, ideally normal life span. So what happens when less than optimal? Who knows? If you stayed where you are and never moved you would be fine. Your blood counts are under control and the disease is not progressing. So for now you are fine. Looking at the long game the lower those numbers, ideally below 0.1, you have the best chance of not progressing. But here's the thing, we are all playing a statistical game. Plenty of people who do get to MMR wind up losing response eventually and have to switch drugs and there are some people who live with sub optimal response for years and never progress. If you look at the most important stat which is progression free survival, the difference between someone who is MMR vs CCyR isn't that big.
So looking at your numbers as an objective outsider (fully acknowledging that when I look at my own numbers I have difficulty being objective) I would say you are fine, but you appear to have hit a plateau, which is not uncommon. Ultimately uou want to break .1 and you may need to modify treatment for the best bet and long term odds, but there is nothing in your results that should freak you out too much. If 300 Tasigna maybe see about 400 or maybe you could switch or ride out longer. You have options so take some time to talk through with dr and if not comfortable with that consider second opinion.
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 garfonzo

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Posted 15 December 2014 - 08:33 PM

Hi John, you and and I are on similar result lines. I was Dx in Jan 2013. Very high leukemic burden and wbc over 570k. Started tasigna 300s and got hung up around 2.5. Upped dosage to 400s and it started dropping again. Currently at .845. Some of us are just slower. You can get a mutation test to help ease your mind. I understand the frustration of being a slow responder but realize that most posters seem to be on either side of the bell curve. Either optimal or poor responders. Our response isn't either one. I consider it kinda in the silent middle if but a little to the slow side.
1/22/2013 initial dx WBC 550k
1/28/2013 begin Tasigna 600

pcr test %IS Drug Dose
7/24/13 2.889 Tasigna 600
10/23/13 2.442 Tasigna 600
1/24/14 2.497 Tasigna 600
3/5/14 2.158 Tasigna 600
6/4/14 1.319 Tasigna 800
9/3/14 0.982 Tasigna 800
12/8/14 0.845 Tasigna 800
3/16/15 1.984 Tasigna 800
4/27/15 0.802 Sprycel 100 PM
6/22/15 0.277 Sprycel 100
8/24/15 0.466 Sprycel 100 AM
9/14/15 0.365 Sprycel 100 PM
11/9/15 0.307 Sprycel 100
1/6/16 0.1 Sprycel 100 - MMR mayo clinic
4/4/16 0.1 Sprycel 100 - MMR
5/9/16 0.1 Sprycel 100 - MMR
6/6/16 0.06 Sprycel 40 - MMR
7/6/16 0.1 Sprycel 40 - MMR
9/12/16 0.09 Sprycel 40 - MMR
11/15/16 0.1 Sprycel 40 - MMR
2/14/17 0.07 Sprycel 40 - MMR
5/16/17 0.06 Sprycel 40 - MMR
9/11/17 0.05 Sprycel 40 - MMR
1/15/18 0.05 Sprycel 40 - MMR

#4 Lucas

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Posted 15 December 2014 - 08:55 PM

hi, trey always says that many times there's a plateau on tasigna - around 12 months of therapy - and then the pcr starts to fall again. maybe it's your case. i'm on tasigna after fail gleevec. good luck!



#5 Trey

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Posted 15 December 2014 - 09:41 PM

You are likely CCyR, which is roughly <1% PCR.  But if you want a true reading on it have a FISH done.  FISH is more accurate until it becomes negative, then PCR must be done.

 

Lucas correctly spelled out "Trey's Patented PCR Plateau Theory" (TPPPT) which occurs about the 1 - 2 year point.  Your are plateaued.  But it will end.  The drugs are in their epic struggle to conquer the leukemic progenitors, which come from Middle Earth....or some place.

 

You could try Sprycel if you want to do something.  Sometimes taking an action helps reinstate a sense of control.



#6 JohnW

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Posted 17 December 2014 - 10:40 AM

Just wanted to thank everyone for their replies -- very much appreciated.

 

I had an appointment with my Oncologist today for the usual blood work.  She is also going to have a mutation study done along with the usual PCR.  Should be about a week before I know if I am now dealing with any type of mutations...

 

Kind of sucks, but at least I'll know more of what is going on when the results come in.

 

Thank you all once again,

John



#7 Lucas

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Posted 17 December 2014 - 02:24 PM

Hi john. Your doctor is doing the right thing. running a mutation test is a guideline in this situation but i don't think you have one. At least, not a resistant mutation because your pcr is not going up. mutations are rare in chronic phase patients. about 10% or a little more will develope then. There are a lot of reasons for your plateau but it seems you'll have a downward sequence soon. i had a mutation analysis when i was on gleevec and it came negative. You need to check your adherence to therapy (many times we think we are taking the meds but we are failing. less than 90% of adherence is not cool) and check for drug interactions. Good luck! 



#8 JohnW

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Posted 31 December 2014 - 12:54 PM

Hi, folks.

 

Just wanted to thank those who replied to my initial inquiry once again -- it was very much appreciated.

 

Got some good news back from my oncologist -- the ABL1 Kinase Mutation Analysis come back as, "...not detected."  I've been biting my nails for what seems like an eternity waiting for these results...  at least I know my mediocre response to Tasigna is now not due to any wonky mutation.

 

My PCR also can back, down from 0.54% in September to 0.43%...  just wish I were in a better place in this regard; it'll be two years in March when I started with Tasigna.

 

At least I'm still headed in the right direction with the PCR -- happy about that. :)






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