20 replies to this topic

[CML.Mom]

Hi all,

I've been lurking since February 2012 when my child was diagnosed with CML and it has been very helpful in helping me get answers and not asking my child 50 questions to freak them out. Thank you Trey and everybody else out there

In the latest test I read that the BCR-ABLl reporting has changed as of August 2012 and there are new recommendations regarding managing CML patients on treatment, so instead of doing repeat bone marrows they can now check the blood for the chromosomal mutation that causes CML.

I'm just wondering if anyone has more information.

Thanks - and keep up the good work.

[GerryL]

Hi,

I only had two BMBs, one when I was diagnosed and the second a few months later when I switched doctors. Since then I've only had blood tests to check the PCR - though I'm also in Australia.

[Antilogical]

I had 1 BMB at diagnosis.  My doctor wants me to have another at 1 year.  Still trying to talk him out of it......

[CML.Mom]

Apparently they will use this blood test instead of the BMA and BMB. Still googling but haven't found much yet.

[Happycat]

I'm thinking they simply mean they can use peripheral blood to monitor bcr-abl levels, rather than taking a sample from bone marrow aspirate.

That's what I have done, anyway. The only BMB I had was at dx.

Traci

[CML.Mom]

Hi Traci, Antilogical, GerryL - Thank you for your answers.

Do you know if this test is as accurate? There was a BMB at dx and also 3 months later. Should have been a 6 month BMB but they did this instead.

I  found some info at Quest Diagnostics who did the test and this looks like it  http://www.specialty...ls.asp?id=91065.

I also found a news report from Quest  http://www.specialty...load/CL0712.pdf where they added this test on 8/7/2012 (page 4)

91065 BCR-ABL1 Gene Rearrangement, Quantitative PCR

and discontinued these 4 tests (page 20 ) on the same date

5342 BCR/ABL UltraQuant® Major 210 KD Transcript Bone Marrow, 5352 BCR/ABL UltraQuant® Major 210 KD Transcript Whole Blood

5344 BCR/ABL UltraQuant® Minor 190 KD Transcript Bone Marrow, 5354 BCR/ABL UltraQuant® Minor 190 KD Transcript Whole Blood

but it still really isn't clear me.

I could really use some help finding out things like why Quest switched to this test? What are the benefits or disadvantages?  How to interpret the numbers in this report compared to the first 2 BMBs?

I'll keep looking and any help in understanding this will be sooo greatly appreciated.

[CML.Mom]

Update - I found a FAQ on the Quest website so some of my questions are answered - http://education.que...s.com/faq/FAQ72  Still have more questions but hope this helps someone else.

Elise

[Trey]

Quest Labs changed their PCR testing for a couple reasons, including so they could align with International Scale PCR reporting.  Some of this was discussed here previously, so I will just link to it:

http://community.lls.../message/151595

The BMB does not need to be done again until 12 months unless he has high risk factors or does not respond to drug therapy as shown by the PCR tests.  The PCR will show how he is responding.  Here is some info about CML testing that may help.

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

More light reading:

http://community.lls...ttype[document]

Your son will very likely do well, but Mom will have a harder time with it all. 

[CML.Mom]

Trey, thank you sooo much for these links. Exactly what I needed but searching for the wrong thing I guess.

Words cannot tell you how much your posts have helped me cope and understand this disease - not to mention help me sleep better at nights.

I truly thank you.

[GerryL]

Hi,

The only other thing I would add is that the PCR test done through blood will have a lower reading than a BMB as the CML is dispersed in the blood stream as opposed to being in the marrow.

[OhRose]

Trey, I am so dim at this. I have read all of this several times and it still does not compute in my brain.  I have a practical example if you could respond I would appreciate it.

Say your DX value was 12.34  on the old scale...does this mean it was 1234 on IS?  Is this what would be considered "your universal baseline at 100%" on IS ? ( I am confused as to what 100% baseline means )  Then each log would progress as 123.4, 12.34, and 3log would be 1.234?

I am sorry to be so slow with this process but the change has confused me for sure. I appreciate your patience and any info. I have read all of the links but guess it is beyond me without some numbers to be the example for my little brain.  thanks sooo much !!

[Trey]

Your example is, unfortunately, incorrect.  PCR reporting is  complicated.  Attempts to uncomplicate it through the International Standard have, in my opinion, further confused things, at least in the short term.  We shall see what it does longer term.

http://www.cancernet...e/10165/1570782

There are 2 ways to correlate a person's PCRs when the lab changes over from non-International Scale to International Scale.  The best way is to have each PCR result stated in log reductions.  Then the results will be somewhat correlated.  The other way is to know the conversion factor that is used to convert the PCR result into International Scale and do the math backward, which works if the PCR process has not been changed.  In the case of the Quest labs conversion to International Scale, this second way does not apply since they also changed their entire PCR process.

So if a person wants to correlate PCRs, the best way is to have all of them stated in log reductions.  This will get somewhat close.  Otherwise, establish a new baseline with the new PCR reporting and go from there, using the standardized log reductions built into the International Scale. 

[OhRose]

Thanks, Trey. I think you had tried to tell me that before but I wanted it to be something simple. I appreciate your knowledge and time.

Rose

[CML.Mom]

Hi Trey,

I've got another question - if the result on the report is

BCRABL1/ABL1%     H                              %                        ( -  )

(IS)                                     8.328

spaced and laid out exactly like the two lines above, What does that mean? An 8.328 reduction?

[CML.Mom]

Also I found a couple of powerpoints on the subject here http://www.wherearey...ABLWebinar.aspx

[Trey]

It means they need a new printer that can put things on the correct lines.  I'm surprised they did not end it with  <[:>(o)--[-----<

The result is 8.328% on the International Scale.  100% is the standardized zero log reduction (baseline zero response).  That means 10% is 1 log reduction, 1% is 2 log reduction, .1% is 3 log reduction, etc.

So the result is slightly more than 1 log reduction. 

Actually an 8 log reduction, if it were possible to calculate (and it is not) would be .000001% 

Wishing your son an infinite log reduction.

[Susan61]

HI:  I see all the responses your getting.  When I was first diagnosed  I had to get a BMB every 3 months until I achieved  a complete cytogenetic response.  Then after that I no longer got any BMB, and they started to just do PCR testing on me.  I have not had a BMB since 2001.  I have been PCRU now for over 9 years, but I am sure if my results were to change to indicate that my TKI drug was no longer working then I would have to go through other testing.

     I get all my blood work done through Quest Labs all the time.  Trey is your best resource for anything you need to know.

Susan

[Teresabourgeois]

When I was DX in 2010 I had a BM every three months until 1 yr.  I'm now in my 2nd year and I've graduated to every six months.  But, I am on a protocol study at MD Anderson in Hoyston, Tx  for Sprycel.  I believe that the study mandates the frequency of my BM. 

[Susan61]

Hi Teresa:  I forgot to mention that well I was in the clinical trial in NY for the STI-571 the protocol was every 3 months for a BMB.  Then I achieved the Ccyr just at the same time that STI-571 became Gleevec as it was approved by the FDA.  Then I was able to go back to my regular Oncologist to continue my treatment.  At that time they changed the frequency of BMB to 6 months.  I had one more BMB with my regular Oncologist, and then we started the PCR testing.

[lehrerin]

My CMLer had one bone marrow biopsy (on diagnosis--in March 2010) and hasn't had another one.   They told us that unless her numbers head up significantly, they won't do any more.   And the one that she did have done was done at the sedation clinic (so she doesn't remember any of it, and had no pain).