You are here

Need help understanding what I was told

I need help understanding what my hematologist told me

So I can remember at least 10yrs of my wbc yo-yoing up and down. I went to my PC and he did a rountine cbc and my whites were around 15,000 and so he triple cks it with an outside lab and it was confirmed. 

So off to the hematologist I go. 1st appt she does all this bloodwork tells me b/f the results she’s looking more for an auto immune disease. Doesn’t think I have leukemia. My blood cells look normal. None look immature.  WBC was I believe 9,000. Results  come in... tells me I am Ph+ and have bcr/abl of .006% she wants to do more testing and a bone marrow

Went back for the bone marrow test, she did fish, cyogentic and pcr.  Can’t remember all the test but my WBC was a little over 21,000 that time. BM is healthy she said. ph+ bcr/abl was the same .006% So She said she wants to see me in 3 months to monitor me. She said I don’t have CML but she wants to continue monitoring me cause I may develop it. My whites that are high is neuphils and my platlets are normal and my reds are slightly high.  So can anyone give me some insight on what exactly is she looking or waiting on. I don’t have a clue. 

Many people have traces of CML. Most don’t develop it.
Testing nowadays shows all sorts of possible maladies.
Your Doctor is right to allow this anomaly to reveal itself
before a diagnoses and treatment would be prescribed.
Hang in there.

Romo

Tidbit ... You may or may not have CML. Most important measurement is not PCR at this stage.

You should have had a FISH test (number of CML cells under the microscope) done. You mentioned you had a bone marrow taken - chances are they did a FISH test.

FISH is reported as a percent. There is no such thing as FISH = 0.006%. It is either zero, one percent, 10 percent, etc. Look at your reports and see if a FISH result is reported.

At diagnosis most patients show 100% FISH.

Given your high WBC's, you may just be responding to an infection (without symptoms). Your WBC's would not be elevated at this stage due to CML.

By the way - if a random test of the population was taken for bcr-abl, many people would show PCR's of 0.00x % and not have CML. BCR-ABL is a translocation of genes on the 9 and 22 chromosome. It is "common" for this translocation to occur - but not common for it to amount to anything. Most people's immune system eliminates it or keeps it at or below detection. We have many chromosomal translocations happening. Most are benign, those that are not are destroyed. Some - turn into cancer. But it is rare.

Consider getting your vitamin D level checked and increase it if it is below 50 ng/ml. Very low vitamin D level is linked to weakened immune systems.