My hematologist has never seen a case like mine.

[AOKMBK1013]

After having abnormal platelet counts my doctor ordered the BCR-ABL1 test which showed positive for CML or Ph+ALL. I was in complete shock. They performed a bone marrow biopsy on me 2 weeks later and it was normal. My doctor was in shock. She had never seen results like mine. Right now I'm scheduled for a full abdomal CT scan and waiting on blood results for Iron TIBC and Ferritin. To be completely honest I'm an emotional mess. What is going on with me? I had and Iron TIBC test done when I had my BCR-ABL1 test done and it was within normal range. The waiting is the worst part. I'm a middle aged woman with 2 young children who is suffering from weakness/fatigue, and now anxiety!! Does anyone have any insight or seen anything like this is? Please help if you can!!

[Ken_PA]

I'm glad to be of help. It's important to understand what's going on.

You can get a copy of tests from your doc via email, fax or mail - if you can't get that online. In some doctor offices they even have a CBC machine right there and so you can get a copy immediately -  then right away look to see if your platelets and/or neutrophils have gone down any because that would probably be a good sign.

[Ken_PA]

Okay, there is a lot to go through here. Unfortunately, your situation is very complicated and so it's almost too much to absorb. But let's not jump to thinking about having leukemia right off the bat.

The most important thing to start off with is the *thrombocytosis*, which is having too many platelets. That changes everything. That is also much less frequent than having low platelets.

As a possible cause, there is "reactive thrombocytosis". That can come from an infection and inflammation (which also causes a high CRP). It can come from low iron. There are also other causes, including blood cancers -  which is probably why you were tested for CML.

Another cause is "essential thrombocytosis", which I think would be more associated with super high platelet counts. So we need to know your CBC results.

There is also the neutrophilia (I'm guessing you made a typo above and left out the "ia"). We need to know if you neutrophil count is normal high (as in an infection) or super high. So we need to know your CBC results for that, too.

I suppose that's enough for now. My guess is that you had some infection, which resulted in discovering the BCR-ABL1 gene. But the BCR-ABL1 gene doesn't necessarily mean you have leukemia, which is supported by your (mostly) negative bone marrow test and lack or abnormal circulating blood cells.

The CT is probably to rule out the presence of enlarged lymph nodes (ALL) or some mass (CML), which they have to do because you have the BCR-ABL1 gene. Hopefully, your scan is clear and then you move on to discovering what you do have and why.

Then again, enlarged nodes jp to a certain size can be from an infection. As you can see, it's not going to be simple. But still, all of this is much better than having a firm diagnosis of leukemia. So there is good cause to keep your hopes up.

[AOKMBK1013]

Thank you. You explained it much better than anyone else has. I wish I had a copy of my CBC results handy. However, I appreciate you taking time to explain this. I'm feeling less anxious

[Ken_PA]

Hi, I'd assume things went like this so far:
- weakness/fatigue led to testing for anemia
- some iron test was low, so a more precise test (TIBC) was ordered
- something else had to be discovered next, in order to justify the very involved BCR-ABL1 test? Enlarged spleen? Family history? Abnormal blood smear?
- with the positive BCR-ABL1 test, the suspected cause of low platelets was marrow suppression from CML or ALL
- but then the marrow biopsy showed nothing bad inside

So now you need an alternate, plausible cause...

What were your CBCs like?

Since abnormal lymphocytes are a possibility, has your doctor mentioned "secondary ITP"?

That's where bad lymphocytes cause destruction of the platelets by the immune system. Do you have a family history of immune system disorders?

How low were your platelets? How high was your WBC?

Being hopeful, here's a case where someone had repeated positive tests like yours over a period of time but never developed leukemia:
https://www.hindawi.com/journals/crim/2010/939706/

"Asymptomatic healthy persons with xxxxxxx chromosomal translocation are fairly common. Although there is no long-term followup for this group of patients, given the rarity of CML in general population, one could extrapolate that only small portion of this population would develop CML."

I don't know if that's your exact same test.

[AOKMBK1013]

It all started with an accelerated heart rate that sent me to the ER. My heart was fine, but the ER doc was worried about an extremely high CRP level. I was sent to a cardiologist who believed that my heart was strong and just responding to something else in my body. My primary doc ordered another series of blood tests (I'm sorry I don't remember what it was called), and I was told my blood counts were all off. Thus I was sent to a hematologist. The first thing the hematologist did was order a series of blood tests including BCR-ABL1, Iron TIBC, Ferritin, and some other vitamin deficiencies. The results showed that BCR-ABL1 was detected and the other tests were in the normal range. A bone marrow biopsy said that the findings were concerning,but not diagnostic of a myeloproliferative neoplasm. It also said cellular bone marrow with adequate trilineage hematopoiesis and slight increase in megakaryocytes. Peripheral blood with neutrophil is leukocytosis and thrombocytosis, without circulating blasts or nucleated red blood cells.


I apologize for the long post. I'm very confused and I'm not sure what any of this means. I have a CT scan coming up and hopefully it will,give us more clues. Thank you in advance

[Barb135]

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