16 replies to this topic

[AmyH]

I got my results from my first PCR test and it was 1.0  ... when I was diagnosed it was 0.5 

Isn't this a raise?  I started my treatment on Gleevec in January and I just don't understand this.  I thought it would be a lot lower! 

Any input?

Thank you!

~Amy

[Trey]

If you actually had a PCR done at diagnosis,  it probably was not .5 (meaning .5%) since your WBC was 260,000.  But you could be mixing ratios and percentages, so you should check on these issues:  Was the first test a PCR?  If yes, then was .5 the actual result?  If yes, was it .5 ratio or .5% (.5 ratio is 50%).  So one potential explanation could be mixing ratios and percentages. 

[AmyH]

I am guessing the first test was a PCR.  I'm not really sure.  I'm in the states right now so I don't have my paper in hand and I have been dealing w/my oncologist through email.  I remember it saying bcr/abl 0.5 but I'm not sure if it was % or not.  He emailed me with 0.5 and 1.0 and didn't say anything about %.  He just said it was normal at this stage.  I'm so confused and upset by all of this.  I just want it to go down. 

[valiantchong]

HI Amy,

Wondering if you could get the scanned copy from your doctor, so that you will have more information.

Normaly the PCR test will tell you how many copies of BCR-ABL detected comparing with the controled gene ABL for example. It will state for example 200 BCR-ABL detected from 35800 ABL-1 copies. Meaning your % will probably in 200/35800 x 100%. However this is from the lab, and it may be multiplied again with a factor for example 0.8 to correlate with the IS (International Scale) measurement.

[0vercast]

I was told mine was at 98.1% at diagnosis.  The Onc told me it was "my BCR-ABL" from my BMB I believe.  So my understanding is that I had a .981 ratio.  Was it taken from blood or BMB?  Would this be a normal number for somebody dx with a WBC of 250,000?

[GerryL]

Hi Amy,

Don't panic too much, your doc has said it was normal at this stage. Just ask him to email you your results and when you get them either privately email Trey or pop them on here.

[Trey]

Partly Cloudy,

That was a FISH.  Ratios do not apply to FISH.

[valiantchong]

normally when dx, one will have close to 100% in PCR results, however this is measurement is compared to the standard reference with International Scale, that standard unit is stored in a std lab as agreed reference.

When in medication after 3 months normally one's PCR will drop depending on individual response. Present std is to achieve CCR within a year and CMR in 18-24 months. There are prove that is one could acheive CMR in 9 months, one will have a good prognosis and progression free survival for long time.

However those who did not achieve such a short timeline, there are people who are in CCR could survive years, without any issue. There are also cases of patients who are in CCR after years of interferon treatment could survive without maintenance for years without medication. However this are only < 5% of overall patients.

CML are a disease that is hard to understand and it act differently on different person. So there is no sense of comparing who is doing better or worse and dont be disheartened if one is doing not that well compare to the standard. I has read a case where the oldest survival was more than 30 years without achieving CMR or CCR...  So life is hard to predict.

However I do hope we could move further than just taking TKIs for life base on present knowledge. Sometime I feel gratefull of the TKI were discovered, but yet I am disappointed with the progress of research after 14 yrs, which does not seems to move to the next paradigm of cure.

[chriskuo]

I believe you mean MMR not CMR at 18-24 months.

[Trey]

PCRs vary widely at diagnosis.  It is the BMB cytogenetics and/or FISH that often show close to 100% at diagnosis.  At diagnosis my BMB/FISH were 100%, and my PCR was 8% (not International Scale). 

[valiantchong]

No it is CMR not MMR, I read a paper that there are supporting facts if one could reach ideal CMR within 9 months means zero progression records in a few years.

[CallMeLucky]

The standard is not CMR it is MMR.  Telling people they need to reach CMR puts undue stress on patients.  There is no proof the people who achieve CMR fair any better than people who reach MMR.  It is all nonsense anyway since the entire thing is based on an unreliable non-standardized test.  Patients should not feel the need to reach CMR, let alone in such an unreasonable time frame as 9 months.  All this does is set people up to feel like they are not doing well when in fact they are doing amazingly well.

[AmyH]

This is what my oncologist wrote back to me: 

Amy, your results are expressed as a ratio converted to %.  Remember, this is too early to judge the effectiveness of therapy by PCR.

PCR is very sensitive, so I'm not surprised by a ratio of 1.0% at three months, it means that BCR/ABL is still detectable in your peripheral blood.  The next milestone for you is the marrow biopsy and establishing if you've had a cytogenetic response, measured by karyotype, not PCR.

The PCR we did at three months was performed to establish some baseline starting points - and will be useful in the future.

I would disregard the result we got at diagnosis, it has no value in your case - they reported a "ratio", although I don't believe it because you were essentially 100% involved prior to therapy.

You haven't gotten worse.  Your current response to therapy is complete hematologic remission, which is expected by three months - so you are on target.

I've enclosed a slide for you to review - the scale on the left is the scale we're using (bcr-abl/abl ratio (%))

You're confused because it is confusing.  You have already had a 2 log reduction, from 100% to 1.0% is how I read your results.

[CallMeLucky]

Good clarification - sounds like your doctor knows what he/she is talking about.

[Trey]

So what I suggested earlier is indeed the case, which is that your diagnostic PCR was a ratio, and the current PCR is a percentage, thus mixing ratios and percentages.  So your PCR has dropped nicely from 50% to 1%.  That makes all the difference.  It appears that your PCRs are on the International Scale, so the 1% PCR  means you could now be CCyR.  If the Onc wanted to give you useful info about this PCR report it would have been what he said in the email, which is that you have achieved a 2 log reduction (roughly equal to CCyR) and he will seek to confirm the suspected CCyR by a BMB, which shows he believes you have likely achieved CCyR at this point. 

This lack of clarity in PCR reporting is ridiculous, and causes anxiety in patients for absolutely no reason. 

You are doing very well.

[AmyH]

Thanks Trey!!!! I was so confused and thought gleevec wasn't working or something!

[Lori's okay]

Amy,

CONGRATULATIONS on a 2 log reduction!! 

I keep trying to think of ways to celebrate these milestones......maybe roasted marshmallows over a 2 Log bonfire??

Seriously, isn't it wonderful to have these folks like Trey to help make this more understandable? 

So glad for your great progress!

Lori