9 replies to this topic

[CML2012]

I was diagnosed with CML in December 2012. My PCR was 53%. In March it was 41?. June was 1.69?. Now September is 5.63?. 400 mg gleevec every day, same time of day. I had mono in July and took a few days of as steroid. Other than that everything has been pretty good. I just knew I would be at 0! any suggestions? Also I am 43, female.......

[Trey]

You could see what the next PCR result is (I would repeat the PCR soon) or switch drugs at any time you wish.  No sign of a serious issue, but not necessarily speedy progress, either.  Another drug might be the best option.

[markandelly]

agreed Trey. 

[CML2012]

Hannibellemo....you responded to my post on "Who has CML"....you wrote that the levels of response are CHR, CCyR, MMR, and CMR or PCRU....can you tell me what % puts you in each category?  Like I said in my original post here I went from 53 to 41 to 1.69 to 5.63 and now I am very stressed.

[Trey]

You are probably hovering around CCyR, which is approx 1% or 2 log decrease in PCR, or zero FISH or BMB.  That is acceptable/average progress in under a year.  Everyone would like to be above average, but definitionally most are average.  If your PCRs are International Standard, CCyR is about 1%.  MMR is .1% or 3 log reduction from diagnosis.  But if it stresses you, the solution is a drug change.  Changing TKIs should be like changing shoes if they don't fit right.

More info:

http://community.lls.org/docs/DOC-1273

[CML2012]

Hey everyone, my original post from above shows I was on Gleevec 400mg and went from 53%(Dec 2012) to 41%(March 2013) to 1.69%(June 2013) then to 5.63%(Sept 2013).  They switched me to Sprycel 100mg after Sept results went up and I am at 1.1% (Dec 2013) These are not log and not international just percentages. So where am I?  Is this good or bad? It has been a year and I want to be at zero....please advise.  Trey from everything I have read you are the man so what do you think?  I read what you wrote before but you discussed log and international and mine are just percentages.

[CML2012]

Hey everyone, my original post from above shows I was on Gleevec 400mg and went from 53%(Dec 2012) to 41%(March 2013) to 1.69%(June 2013) then to 5.63%(Sept 2013).  They switched me to Sprycel 100mg after Sept results went up and I am at 1.1% (Dec 2013) These are not log and not international just percentages. So where am I?  Is this good or bad? It has been a year and I want to be at zero....please advise.  Trey from everything I have read you are the man so what do you think?  I read what you wrote before but you discussed log and international and mine are just percentages.

[Trey]

If the PCR was done at the same lab as the other previous ones, then it appears to be going in the right direction. 

Ask your Onc to put the results into a log reduction format.  Almost every major lab does that, so it should already be on your PCR report.  That will provide a more accurate assessment of progress than raw percentage numbers. 

The recent drug change seems to be doing well for you.  I would say you have reason to be pleased with the recent result. 

[CML2012]

Trey this is what I finally got from the doc...Sorry it is taken so long  My Dec results were 1.1% for PCR.  I asked them for a log reduction format and this is what I received:

(bcr/abl1)/abl1 international scale percent ratio 1.1%.......The copy number for each target is calculated based upon calibrators linked to the WHO bcr-abl1 international reporting scale.  A complete cytrogenetic response is associated with a 2 log (bcr/abl1) level reduction or 1.0% on the international scale.  A major molecular response is associated with a 3 log (bcr/abl 1) level reduction or 0.1% on the international scale.

Any thoughts.....

[Trey]

So you are at Complete Cytogenetic Response (CCyR) as shown by the roughly 1% IS PCR.  You have achieved CCyR in 12 months, which is on target with the goal for treatment (12 - 18 months).  CCyR is the first level of "zero", meaning zero BMB or FISH.  It would not be reasonable to expect a zero PCR at 12 months for 90% of CML patients.  So overall you have done well.  There is often a flattening (plateau) of PCR results about the one year point, so your recent history is not unusual.  Continuing the Sprycel would be recommended by most Oncs.