7 replies to this topic

[donnadavis]

How does your onc. know what phase you are in when you are diagnosed ? I have read different peoples stories where they didn't even feel sick and went to the Dr. for something and found they had CML. How does the onc. know?

[MJB]

I am sure that Trey will be able to answer your question clearly and with depth but a simplistic answer is that they know the phase by the percentage of blasts found.

Chronic phase = < 15% blasts

Accelerated phase = 15 to 30 % blasts

Blast phase = > 30 % blasts

take care,

MJB

[Trey]

The definitions for CML Phases are not firm, and are more of a continuum than a stair-step.  Each Phase could be further divided into "early" and "late".  But generally the list below (which I built from my own research) helps define CML Phases, but is not all inclusive.  In Accelerated and Blast Phases, each individual patient may not have all indications listed for each Phase.  Also, having one of the indications does not necessarily mean that a patient has advanced to the next Phase.  Further, in the era of TKI drugs, these drugs can often put a patient back into a previous Phase.  In the Blast Phase this is less likely, but still possible.  The goal of TKI drug therapy is to put a patient into a state of low level Chronic Phase CML (as low as possible, as defind by PCR results), and keep them there indefinitiely.

Chronic Phase

- Fewer than 10% blasts in peripheral blood and  bone marrow*

NOTE: While blast count is the primary factor, other individual unusual characteristics could be used if to diagnose as late Chronic Phase or Early Accelerated Phase when blast count is above 5%

Accelerated Phase

- 10% to 19% blasts in peripheral blood or bone marrow*

- Resurgent high WBC counts

- Significantly decreased blood cell quality (size and shape) along with resurgent anemia

- Additional chromosome abnormalities

- Peripheral or marrow  basophils 20% or more

- Resurgence of thrombocytopenia (high platelets) above 1 million (100 x 10(9)/L) after having been lowered by therapy

- Resurgent spleen enlargement

- Marrow fibrosis

Blastic Phase

- 20% or more blasts in peripheral blood or bone marrow*

- Characteristics of Accelerated Phase as listed above, and likely at increased levels

- Extramedullary disease (including "clumping" of leukemic cells into a sarcoma)

Note that some of these items can be present at diagnosis, such as poor blood cell quality, enlarged spleen, high platelets etc.  But it is often a resurgence in these that shows progression, not the initial issue at diagnosis that can be overcome by drug therapy.

*Blast count levels by Phase are the subject of disagreement.  Formerly, Chronic Phase was under 15%, and Accelerated Phase was 15 -25%.  Just be aware that these are fuzzy levels in the age of TKI drugs, although blast count is still a generally useful guage of CML Phase.

[donnadavis]

Thank you Trey,

          That breaks it down nicely. ( I am trying to get one of my grandchildren to go into the medical field. They are all a bunch of wimps! All I hear is "We're afraid of blood !". Give me a break, I need someone with information in this family so I won't have to bug you all the time.)

[Tedsey]

Maybe dumb questions...  I know that when CML is discovered most often there is an elevated number of WBC of the myeloid type (sometimes it is just increased platelets).  When the pathologist determines the blast population, does he or she look for blasts in each lineage (neutrophils, basophils & eosinophils?) and average them?  Is that how the blast number is determined, thus what stage of CML a person is in at dx?

From my initial report last Nov., (which I think was done by circus clowns instead of professionals), there are three different blast percentages reported (and the report was amended three times, so it is confusing).  The blast counts reported are 1%, 2% and 2.6%.  So, since these numbers are below 5%, I was dx in the CP, and that is what I was told.

Here are more questions:  Anyway, it appears as if my CML is recently behaving like I am in the AP.  However, last May, my report showed no significant increase in blasts.  My onc does not do FISH.  Did not get a complete cytogenic response at 6 months as determined by BMB, but that appears to be OK if I get one at a year or 18 months.

I have only 2 PCR numbers that are reliable.  The PCR tests were done last May on my peripheral and aspirate (the PCR test on peripheral and aspirate were done 4 days apart).  I anxiously await my results from the last PCR that was done Aug. 16th.  Hope the report is done by tomorrow. 

With only 2 PCRs behind me, what can my onc derive from the new PCR number?  It appears to me that no one will know if I have progressed until Nov. 2010 with my next scheduled BMB.  I understand that CML is a chronic, thus, slow moving cancer.  But I also know that is not always the case.  I am a little worried. 

My onc is planning a drug change for me tomorrow.  Obviously, if I show signs of progressing or lack of response from Gleevec, a change would be done anyway.  But how can this be determined by the info. that I have so far?  I am concerned because my WBC are now improving (I was on shots for a few months and have been free this past month).  A drug change may blow my WBC all down again.  I have very severe anemia (thus, my thinking that I am progressing).  What could tomorrow's CBC and PCR number tell that would really warrant a drug change?   I am beginning to believe from reading that the anemia will only get worse with the change or just stay the same.  I am so confused what to do (stay on G or not--so far, no evidence I am failing it, but no reliable numbers over time).  Should I go to Tasigna, which is more like Gleevec, or try Sprycel which may be stronger and get me to CCyR faster?  Sorry.  I know that no one but my onc and I can determine that.  It appears Tasigna may be the better choice because of my recent WBC improvement on G.

Another issue is my RBC.  I need improvement there.  Only time will tell if it will improve if I stay with G.  A drug change may correct it.  I like to think that G has put my lower stem cells in order and is now going after the big mother that creates all blood cells.  But, that is only conjecture and fantasy.  There is no way to tell.  Drat!  I have a dark feeling inside that my onc will recommend we start looking for a donor.  I am thinking with the severe anemia and the shots doing very little, there will be no TKI that can make me better.  It may not be worth wasting time (although it is protocol to fail all 3 drugs before a SCT).

I guess all I can do is take my new pill tomorrow night and see how it goes, but I don't want to do this if I am actually doing well on G.  Three PCR tests will not show that.  A FISH may, but I am out of luck there.  I mentioned before that my onc does not want to give me a break between drugs.  I am on an ESA (to stimulate RBC) and cannot be off a TKI at all while on it (per Dr.Druker's advice).   So what is my question?  Well, it looks like I got a ton of them.  Anyone up for answering or commenting on my disjointed post?  I feel disjointed and hopeless. 

[Trey]

Tedsey,

You have issues with low counts, and maybe you are just starting to turn the corner on that.  The low counts and anemia do not tell you anything about disease stage.  But if Gleevec were not working at all, then the WBC would be much higher.  Your last BMB showed steady progress.  This PCR should have some relative usefulness even without others for comparison if you can obtain a log reduction equivalence.  You should ask for that.  If the Onc cannot tell you, ask for the lab director's phone number.  Get a copy of the report.

Changing drugs is not a bad idea.  The drug change may not make much difference on low cell counts, but then again it might.  But you would want to take the lowest dosage (Tasigna 600mg/day or Sprycel 100mg/day) or maybe even start half dosage.  You could pick one of these drugs and go with it.

[Sneezy12]

Trey-what is a " log reduction equivalence" ? Thanks, Frank

[Trey]

A PCR is reported as a percentage number.  That number can be converted to an average log reduction for that particular lab based on its history of PCRs.  I call that the "log equivalence" of that labs' PCR value.