3 replies to this topic

[Irish2170]

I have a question about the BCR-ABL qRT-PCR test.  I just received my results from the oncologist, and the results were less than 0.01% .  (The percentage of BCR-AB: to ABL transcripts is less than 0.01).  My white blood cells have been elevated for the past 2 years (14,000-19,000) Two years ago I went through a lot of testing, including bone marrow which was unremarkable.  My LAP score was elevated, everything else pretty much normal.  Now I have a new doctor who decided to do the BCR-ABL testing.  When he gave me my results he said that there is a concern since I had some percentage in the blood, but he wants to wait and repeat the test in 3 months.  I am not sure after reading all the posts if this is a good idea to wait, considering I have had the high WBC for over 2 years (that I know of).  I am a 46 y/o female. He asks about the fatigue (I am a nurse working full time night shift and have 3 kids- I'm exhausted) and night sweats (yeah, have those also, figure it is menapause). How do you know when the symptoms are what they are looking for vs life?  Any thoughts?  Ideas?  Should I get a second opinion? If you get a second opinion do they use the results of the tests you have had done already?  I don't have very good insurance and have to pay a lot for the tests I have had done already.  I will repeat them if I need to, of course, can't put a price on health, but I also don't want to just repeat them if not necessary.  I am so scared, don't want to wait and miss something we should have taken care of sooner.

[Irishmonk]

Without more info I am not sure what it means either. Do you have more complete info from CBC? Symptoms are all over the place with CML. I can't tell you all the stupid things I went thru over the last four-five years because my doctor simply forgot to do a CBC on me over that period of time. By the time he did we found out my WBC was at 71k and you might imagine that is when all the crazy things that had been going on now had an explanation CML. Are you on any medication for your CML? Just need some more info.

The PCR tests number sounds good but the key as I understand it is what is the baseline for the test.

[PhilB]

Hi Irish,

I suspect Trey will be the only person on this site able to give you any ideas - many of us are very good on regular CML, but your numbers don't look anything like a typical CML presentation. The near undetectable level suggested by your PCR test would not be enough to cause you to have elevated blood counts - or any other symptoms.  It may be that the test is a 'false positive' which can happen.  Some people also believe that the BCR-ABL gene may show up in normal, healthy people without causing any problems so it may just be a coincidence.  Or the counts and the weak positive BCR ABL may both be due to something else in the wider world of myeloproliferative diseases - but that's way beyond the limits of my knowledge

Best wishes

Phil

[Trey]

You wrote:

"I just received my results from the oncologist, and the results were  less than 0.01% .  (The percentage of BCR-AB: to ABL transcripts is less  than 0.01)."

The PCR results are most likely written that way ("less than") because the BCR-ABL levels, if they are even present at all, are below the level of sensitivity of the test.  This could be because the PCR test being used is one with low sensitivity.  Either way, it may be that the PCR did NOT detect any BCR-ABL.  I would ask the Onc to get a specific interpretation from the lab that did the test.  It could be that the PCR is inconclusive, and there may be undetectable (or no) BCR-ABL.  That would mean no CML diagnosis.

The high LAP score is odd.  90% of folks  with CML have a low LAP.  The others can sometimes be a "leukemoid  reaction".  That is a fancy medical term for "I dunno".

http://www.clinlabnavigator.com/Tests/LeukocyteAlkalinePhosphatase.html

I cannot tell you what what your issue is.  It is very possible that you do not have leukemia, but it is possible that you do have leukemia. Only time will tell.

It is reasonable to wait until a test can reveal what the problem is.  Waiting for a reasonable time will not normally let the issue get out of control.  Most of us were much further along before being diagnosed, so the risk of waiting should be low.  You do not want to treat the wrong problem.

At this point, if it were me, I would NOT assume that it is CML.  I would wait for at least several months before repeating tests.  Some people just have high WBCs.  Your other symptoms do not reveal anything other than you are a 46 y/o female who works and has several active kids.