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PCR Results...is 1 or .1 the new goal???

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#1 reedgirl



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Posted 29 April 2012 - 09:19 AM

Hi all....its been a very long time since I posted on here, I do get on and read posts to see how everyone is doing.  I see lots of new members to the board, not sure if that's a good thing or bad thing.

Just have a quick question for the experts.....Greg saw Dr. Talpaz on Thursday.  We discussed his last 2 PCR tests, two times ago it was .183 then in December it was .108.  The test in December was not as accurate since his blood was drawn at home and overnighted to Michigan.  Dr didn't seem too overly concerned about the change in level.  I asked him why after being on Sprycel a year Greg isn't .000 something.  He said they aren't as concerned about getting people to that low level anymore.  He said they feel getting to .1 or even 1 is great enough results.  So, if that's true aren't there a lot more who have reached the great result???  Is this accurate or is he trying to make us feel better about Greg's slow results???  Greg is on 70mg of Sprycel, he's on a lower dose because of drug intolerance to Gleevec and Tasigna.  Dr Talpaz did say after he sees the results from Thursday's draw he might want to up the dosage to 100mg depending on what his level is.

One other thing he mentioned....He said if Greg stopped treatment right now, he would not see any harmful effects or see great disease progression for 1 year.  What's everyone's thoughts about that?  I fully trust Dr. Talpaz, as I think he is one of the top docs for CML but these new revelations are quite surprising and contradictory to what I've read and thought to be true.

Thanks for any and all input,


#2 PhilB


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Posted 29 April 2012 - 11:54 AM

Hi Audrey,

Dr Talpaz is indeed one of the world's greatest authorities on CML so you are definitely right to trust him.  The 'official' long term goal is 0.1% which is known as MMR.  Any further reductions below that have no real significance in terms of long term outcomes (which are overwhelmingly favourable).  The limit of testing is generally between 0/01% and 0.001% and only a minority get below that.

Even if you don't get down to MMR, 1% is roughly equivalent to a CCR and if you can hold that for a couple of years it's pretty well as good as MMR so whilst you may wish ot get lower (I know I did and was gutted when I plateaued) there isn't really any reason to worry.  In other words, Greg is doing very well.

All the best


#3 Tedsey


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Posted 29 April 2012 - 03:02 PM

I think PCRU is overrated.  I think because so many lucky folks on this board have reached the brass ring of CML response, it seems as if most people with CML get there.  Like Greg, I have not reached MMR.  I have been dx over 2 1/2 years.  I have only been holding at CCR.  So far, I am the only one that worries.  Much of it comes when people come across in their posts like if you get to PCRU, it is shoe-in for outliving this disease.  Not that I don't send all the best wishes in the world to those who have achieved such a deep response and pray they all outlive CML, but according to research, their overall numbers are few.  There are misunderstandings amongst oncs and CMLers alike.  As long as the disease is not progressing.  That is key.  No one can predict the future.  TKIs are too new and there is much more to learn about CML.  Of course, we would all love to attain the lowest of the low.  But until all PCRs are the same everywhere, the data cannot be close to 100% reliable. 

Take care,


#4 pamsouth



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Posted 29 April 2012 - 05:38 PM


I couldn't have said it any better then you.  I do believe there are many with CML that never reach PCRU and perhaps stay for years in CCyR and their survival projection is just as good.  You can still run below the radar of PCRU and you still would have million of Leukemia cells.  Then you have to balance all of that with the short/medium/long term side effects of the TKI drugs.  Also some of the TKI being new, we don't know what that means down the road for many of us, regarding side effects and history of these drugs, as most are in short trials.  When I say side effects I am not just speaking of a rash.  But the effects on the major organs, such at the heart, kidneys, lever, even are five sense and the brains, just to mention a few.  Then there is also the quality of life to consider.  It is different strokes for different folks.   There may be some on a very low dose of a TKI that remain PCRU, but others  may be on a standard on hight dose, and  they are not PCRU, but remain stable thru out years and their longevity may be as long as someone that is PCRU.  PCR only mean they can test up to a certain sensitivity, you still have leukemia cells.  I do believe that aTKI drug, only kill at the lower level where the stem cell become the Myeloid side. (the cml long term stem cells at the top of the genealogy, has grandchildren or great grandchildren, etc.  I have a chart with the names of different levels, I did go over some of these questions with the onc nurse, per phone conversation, didn't understand all of it.  I don't think the TKI ever kills that high up, only up to where it becomes the myeloid side. So even if the TKI kills at the lower level, so the long term CML stem cells would still be producing her babies).  So I believe the bottom line is, the TKI drugs, don't kill the actual leukemia cell, at the top of the chain or geanology. Therefore if you were to go off TK meds completely it would be a matter of time before it would become dedectible to our standard of test, that is what I understood from my oncologist. I heard one oncologist say, that as long as your labs, stay in sort of a wave and are not going straight up, don't get to concerned as you can take a dozen different blood drops and test for CML and they can all be different.  Kind of like going fishing, you can drop the net in, but are there any fish where your fishing. Maybe a poor analogy.

There is a chart out on the board somewhere that is pretty basic.  I would have to go searching for it,  I think either Lucky or Scuba uses it alot, or it could be Trey.

That is the best I understand it, I am sure it is much more complex then that.  I sometimes wonder about the mutations though.  That is a different sort of worry.  Where do the mutations start, at the top with the Long term stem cell or at the bottom of the chain with the Philadelphia Chromosome, the BCR/ABL, referring to mutations of the #9 & the #22.  It is my understanding they have different break points. It is also my understanding that the FISH AND PCR only check for the BCR/ABL mutation of the #9 & #22.  So when they speak of mutation I am not sure what they are referring to. Also are they referring to the blast, acute, and were does a blast start at the top with long term stem cel,l or can they start at the bottom level?  When I go to the oncologist in June I need to ask.  Unless of course someone would like to take a stab at it.  I would be very interested in knowing as we throw that word mutation, around from time to time.



#5 Trey


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Posted 29 April 2012 - 07:08 PM


If you had been told Greg would achieve MMR when he was diagnosed with a very rare double translocation, and could barely stay on a drug for very long, you would have thought you were dreaming.  Live the dream.


#6 CallMeLucky


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Posted 30 April 2012 - 10:22 AM

I would also argue that a population of the people who state they are PCRU either

a. are misunderstanding their status either through their own lack of knowledge/experience or had it explained wrong by their doctor

b. the PCR test they are basing it on is not as sensitive as it should/could be

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%


#7 pammartin


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Posted 30 April 2012 - 03:50 PM

I have noticed that a labs do not test down to the same level at every PCR test.  I find this interesting.  What I cannot understand is why there is not a regulated guideline for the PCR test either International Scale or Non.  It would make the testing much easier even when switching from lab to lab and reading results.  Is there a reason there is not been a baseline created, or to date has there not been enough patients who needed this test to create one?

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