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Lost my PCRu


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#1 MCPO

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Posted 22 December 2014 - 04:43 PM

Not a whole lot of people who get it, so just posting it here for people who do.  I had my PCRu for about two years and then had bleeding issues from Sprycel.  After a month break, started Tasigna.  My PCR is now 0.01.  My oncology nurse who called was ooberly positive that I am still MMR.  I know I shouldn't have, but I secretly hoped I was actually cured and could see treatment-free remission in a couple more years after maintaining my PCRu.  This isn't a horrible PCR, but it means there's no way I'm cured like I secretly hoped.  I've been batting nearly 100% with making sure I don't miss doses since I started this journey 4 1/2 years ago, save for maybe than 5 or 6 days in that whole time span.  I'm irritated that I think medical professionals sometimes assume that if your PCR trends up, it must mean you miss doses.  

 

Anyway, not overly concerned at this point about the actual PCR number and maybe nothing really changed and it's just the normal variance that comes with PCRs.  Just really really really bummed to have lost something with this result and that this is evidence I'm not actually cured.  My goal was to maintain PCRu for 5 years and then talk to my oncologist about trials off TKI or at least lower it in half because I am very concerned about taking such potent, toxic medications twice a day for the rest of my life.  

 

Thanks for being a group of people who can relate, when not many people can, including medical professionals.

 

And now for a question: this was my first PCR result outside of MD Anderson.  I recently decided to stay local for my oncology care rather than continue traveling every 6 months to Houston.  I will probably schedule another appointment now that my PCR is no longer undetectable, but what is the significance, if any, that this result is not from MD Anderson.  Does MD Anderson's scale trend higher or lower than the international scale?



#2 Trey

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Posted 22 December 2014 - 06:18 PM

MD Anderson and almost all labs advertise their CML PCR as 1 in 100,000 sensitivity.  But the difference is that labs truncate the results at certain points, generally -4log, -4.5log, or -5log.  Most truncate a -4.5 log, but not sure if MDA truncates earlier.

 

http://www.mdanderso...t-analysis.html



#3 CallMeLucky

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Posted 22 December 2014 - 08:47 PM

In my experience a different lab makes a big difference. If I'm not mistaken MD Anderson doesn't even do International Scale, they have their own "Equivalent"
Out of curiosity what lab did you use this time.

Oh and I get your frustration. When I lost my pcru I too was a bit broken hearted that I wasnt "cured". I've adjusted my expectations. If I stay MMR I am happy.
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%
 

 


#4 scuba

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Posted 22 December 2014 - 09:06 PM

Not a whole lot of people who get it, so just posting it here for people who do.  I had my PCRu for about two years and then had bleeding issues from Sprycel.  After a month break, started Tasigna.  My PCR is now 0.01.  My oncology nurse who called was ooberly positive that I am still MMR.  I know I shouldn't have, but I secretly hoped I was actually cured and could see treatment-free remission in a couple more years after maintaining my PCRu.  This isn't a horrible PCR, but it means there's no way I'm cured like I secretly hoped.  I've been batting nearly 100% with making sure I don't miss doses since I started this journey 4 1/2 years ago, save for maybe than 5 or 6 days in that whole time span.  I'm irritated that I think medical professionals sometimes assume that if your PCR trends up, it must mean you miss doses.  

 

Anyway, not overly concerned at this point about the actual PCR number and maybe nothing really changed and it's just the normal variance that comes with PCRs.  Just really really really bummed to have lost something with this result and that this is evidence I'm not actually cured.  My goal was to maintain PCRu for 5 years and then talk to my oncologist about trials off TKI or at least lower it in half because I am very concerned about taking such potent, toxic medications twice a day for the rest of my life.  

 

Thanks for being a group of people who can relate, when not many people can, including medical professionals.

 

And now for a question: this was my first PCR result outside of MD Anderson.  I recently decided to stay local for my oncology care rather than continue traveling every 6 months to Houston.  I will probably schedule another appointment now that my PCR is no longer undetectable, but what is the significance, if any, that this result is not from MD Anderson.  Does MD Anderson's scale trend higher or lower than the international scale?

 

M.D. Anderson does not use the I.S. Scale. There is a rough conversion that equates a lower I.S. result to a higher M.D. Anderson score. MMR is defined as any level below 0.1% M.D. Anderson scale. They report down to levels of 0.01%  They do not report the third decimal place but instead use the unreported third decimal place to either indicate "<" 0.01 or "=" to 0.01. Any result less than 0.001 is "undetected".

 

In your case, rather than switch drugs, why not reduce your Sprycel dose? You were able to achieve PCRU on Sprycel. Reducing dose may have kept you PCRU and then "wean" you off the drug.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#5 MCPO

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Posted 24 December 2014 - 01:43 PM

Hi Scuba, We considered lowering dose to 50mg from 70mg of Sprycel instead of a drug change.  I could never tolerate 100mg of Sprycel.  But, decided to switch to Tasigna because of the issues with suppressed counts and multiple bleeding events I've had with Sprycel.  I've been on Tasigna about a month now, maybe 6 weeks, so I think I lost my PCRu during the break from TKIs while trying to get a handle on a big hematoma caused by my suppressed counts on Sprycel.  I think this last PCR isn't really reflective of Tasigna, yet, since I had only been on it for a short time after a moderate break time from all TKIs dealing with the hematoma (which isn't dealt with, even still...ugh).  My concern with Sprycel is the bleeding.  While bleeding is a big risk with all TKIs, I've had major bleeding issues now with Sprycel that have required medical interventions and don't want a brain bleed or a gi bleed next.  Maybe that's dramatic, but having a baseball sized hematoma in my chest that won't go away and comes back immediately after being aspirated has made me a little nutty. Of course, with Tasigna, I don't really want sudden death from QT prolongation, either.   ;)  I'm thinking that if my next PCR in a couple of months elevates any more or doesn't go back to being undectable, we'll switch to 50mg of Sprycel and try that.  My platelets aren't necessarily super low on Sprycel, but they are very bad at sticking.  So, the way my body clots isn't efficient, even though the counts look ok.  They have started running platelet function tests on me instead of just relying on the platelet counts.  

 

Interesting about MD Anderson scales.  So, if I had the same test at MD Anderson, could I theorize my PCR would actually be even higher than 0.01?  I'm just trying to figure out if I am actually higher than 0.01 if I were tested at MD Anderson or if I would have maybe still been PCRu at MD Anderson.  Based on what you're saying, I probably would have shown back on the PCR charts at MD Anderson.  I appreciate the care I've received at MD Anderson up until now, but it's becoming so expensive and time consuming traveling 4 hours for these appointments.  And, ever since having to deal with other specialists from these bleeding episodes, I've been a little disheartened by the coordination of care between Houston and my local specialists.  It's been easier getting my local oncologist to coordinate care better.  I obviously needed to vent.... haha!



#6 MCPO

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Posted 29 December 2014 - 02:18 PM

Oh, and CallmeLucky, I used Quest.



#7 chriskuo

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Posted 29 December 2014 - 04:36 PM

It is not realistic to think of a "cure" until there is long-term proof that such a cure exists.
If you are MMR, even without PCRU, you are in good shape in you can tolerate the side effects.

#8 Trey

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Posted 01 January 2015 - 02:09 PM

Scuba provided the MDA conversion factor info is a recent post.

 

As another example, OHSU has a known .35 bias, which means they use 2.22 as their conversion factor as follows:

 

2.22 X [PCR Raw %] = IS percentage

 

So for example, if a PCR result is .045% :

2.22 X .045  = .1 IS


Edited by Trey, 03 January 2015 - 10:46 AM.


#9 MCPO

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Posted 03 January 2015 - 10:23 AM

Thanks, Trey!  






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