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#1 mom2three

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Posted 12 March 2011 - 06:31 PM

I was diagnosed with CML May 2010.  I have only had one BMB and that was last May.   I was on Gleevec at first then my Onc decided to switch me to Tasigna.  He said they had decided it was a better way to go than then Gleevec.    Anyway,  my numbers initially were 167k and they are now hovering around 12k .. They have never gotten any lower.  The last time I was at the ONC was in Feb and I don't go back until May.

1.  Is my onc right with not doing another BMB yet?

2.  Should I be concerned that I've not gone lower than 12k yet on my WBC?

If someone could please give their opinions, I would greatly appreciate it.

Thank you!

Lisa



#2 Trey

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Posted 12 March 2011 - 11:36 PM

A better indicator would be FISH and/or PCR results.  Some people have a higher than average WBC, so it is not always a reliable measure of progress.  The need for another BMB would be driven by the FISH/PCR results.



#3 CallMeLucky

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Posted 14 March 2011 - 11:42 AM

According to NCCN treatment guidelines, during first year, you should have a BMB at diagnosis then at 6 months and again at 12 months.  You should have a FISH/PCR at diagnosis and then every three months.  You should call the office and ask for copies of all these tests.  If they have not been doing these tests you should inquire why and perhaps seek a second opinion.  I'm assuming they have been doing these tests, but if they haven't that is a problem.  You do not want to treat CML blindly, and as Trey mentioned, blood tests are the least indicative of what is going on.

Best of luck


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 mom2three

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Posted 14 March 2011 - 04:49 PM

Thank you to you both~

I called the cancer center today and they won't email me the reports.  They said that they would put them in the mail to me.

They said I had one done in June and in October that is all.

If I don't understand them, I'll post the info here for your help if you don't mind.

Thanks!



#5 PhilB

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Posted 14 March 2011 - 04:57 PM

Mind?  We'll all mind a lot more if you don't post them now you've got us all interested.



#6 mom2three

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Posted 16 March 2011 - 09:30 PM

Ok..got my reports in the mail today..I have no clue whatsoever what these mean so here they are:

5/26/2010

Quantative BCR/ABL by RT/PCR  0.487 H (POSITIVE)

Log Reduction 0.929

10/25/2010

Quantative BCR/ABL by PT-PCR:   0.003  H (POSITIVE)

Log Reduction 3.139

On this report there is this info directly underneath it that says:

bcr/abl Gene rearrangement, Quan, PCR, Cell based:

Abnormal bcr/abl Gene Rearrangement, Quan PCR, Cell based

bcr-abl t(9;22) fusion

(q34;q11) translocation

Can someone please explain this to me in terms I would understand.

To be honest, I don't understand this whole log reduction thing.

Thanks so much! 

Lisa



#7 Trey

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Posted 17 March 2011 - 08:25 AM

Very good results.  In  5 months your PCR dropped from  0.487 which for your lab is a Log Reduction of 0.929, to 0.003 which is a Log Reduction of 3.139

A 3 log reduction is also called a Major Molecular Response (MMR) and is the milestone for an excellent response.  So you are doing very well.

The "info directly underneath" you referred to is just standard verbage about PCR processing, so ignore it.

If you want to know more about this subject, you could also read this:

http://community.lls.org/message/38716

Back to your original questions about your CBC showing a 12K WBC and no recent BMB.  It would be reasonable to assume that your excellent response continues.  But the one minor issue is whether a slightly high WBC means anything.  It would more likely be caused by a recent virus or infection (even low level), or some people just have a higher WBC, and it is normal for them.  But it is time for another PCR anyway, so as long as it shows continued excellent results, all is well.  And you would not need another BMB unless there is an indication of loss of drug response since you are at MMR (which is why I said previously that the need for a BMB depended on what your PCR was showing).



#8 gunner

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Posted 17 March 2011 - 08:29 AM

These numbers look great!

Was the 5/28/2010 a blood draw at or before you started on Gleevec? Most of us have a PCR score from the initial diagnosis that we use to set a 'zero' point.

If this was drawn before you began the Gleevec, then it looks like your initial percentage was 48.7%.  At the time of the second draw, it was 0.3%. This would represent a 2.2 log reduction at a 5 month time. That is a respectable decrease. If you started Gleevec the 1st of May, then you have an excellent response. Either way, the numbers are going the right way.

I had a bone marrow biopsy at initial diagnosis and one at 6 months. They suggested one at one year, but couldn't come up with a decent explanation of what they would learn from it, so I declined. The results of my first two BMB showed no problems. It would have been different if they would have shown fibrocity (burned out marrow) or other problems.



#9 CraigW

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Posted 17 March 2011 - 07:57 PM

I prefer to use the decimal number instead of the log.

MDACC says that if you are below .09 you are in "safe-haven", meaning you have less than 2% chance of progressing.

Less than .09 is also called a Complete Cytogenetic Response CCR, which is the primary goal.

The next goal is a Major Molecular Response which is sometimes called a three log reduction, somewhere around .009

Then depending on the sensitivity of the lab test, you might see a four log reduction, or .0009, or undetectable (PCRU), also called negative on some reports.

The primary thing to remember is that with TKI therapy there is little difference between a solid CCR and a PCRU. Both indicate a 98% chance of progression free survival over the next 12 months "Safe-Haven".

You are in great shape!



#10 Trey

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Posted 18 March 2011 - 08:48 AM

Those numbers only apply when the lab is using International Scale, and many do not use International Scale.



#11 PhilB

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Posted 18 March 2011 - 09:16 AM

If you'd like it in even simpler terms - it's Happy Little Dance time!

Your last PCR test showed levels more than 1,000 times lower than the 'standard' newly dx person would have.  This is one of the key targets for drug treatment and is associated with only a very low risk of your CML ever progressing.



#12 CallMeLucky

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Posted 18 March 2011 - 09:31 AM

"To be honest, I don't understand this whole log reduction thing."

a log reduction (or increase) is a 10 fold change in the reported number.  The simplest way to look at this is based on the decimal point.  Every time the decimal point moves to the left it is considered a log reduction and anytime it moves to the right it would be a log increase.

So in my case (note my lab is not on international scale) I started out at 1.2

.12 is a one log reduction

.012 is a two log reduction

.0012 is a three log reduction

etc, etc

A three log reduction is known as a major molecular response and that is the primary goal of TKI treatment.  If you get lower than that or even undetectable (PCRu, also known as Complete Molecular Response) mazel tov!

Many people will not acheive undetectable status and that is okay, studies have shown as long as you keep the disease at a very low level it should not progress.

The milestone you achieve prior to MMR is called Complete Cytogenetic response and while there are some round about ways to look at PCR reduction and conclude CCyR, this milestone is usually determined by a negative bone marrow cytogenetic test and/or a FISH test.

So to keep it simple

You want blood counts to go back to normal

then you want you want to see zero PH+ cells detected on cytogenetic/FISH tests

then you want to see a 3 log reduction in PCR.

If you achieve all of these milestones you are in a very good place and odds are in your favor that your disease will not progress.

It appears you are doing very well, congratulations!


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%
 

 





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