Acute Myelogenous Leukemia (AML) Support Group
Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.
The only definitive way to DX AML is a bone marrow biopsy. I am not an expert on a CBC; however, I can share what I experienced. When I was dxd two years ago at age 48 I felt fabulous. I had some bruising but I have always bruised easily. My AML was discovered by routine blood work. My HCT (red count) was normal, my platelets was 98 (low but not very low) my WBC was 1 and most importantly my ANC (absolute neutraphil count) was 0.02. My understanding is that WBC, ANC and platelets are the big indicators. Most have high WBC with low ANC.
I'm praying this is something other than AML but if it is, please know we are here to help and support. We are LIVING proof this can be beat, by the grace of God!
Please keep us posted.
Praying for no AML
Julie
Julie is one of the most loving persons I know -- she pours out her heart to everyone on this forum. I read her response and can just say -- AMEN to all of it.
I am a five year survivor so basically beat AML although they still say I have MDS, but at 71, nothing to worry about. So, I can give you some advice as Julie did based on my experience -- but will not repeat all the good things she said.
First of all, your symptoms are a lot like mine were -- light headed and a headache that was quite different -- spaced out. NOW, this does NOT mean you have AML -- I had a very similar thing with encephalitis about five years before I had AML -- much the same symptoms feeling wise -- major headache. What I am saying is there are a lot of things -- probably a dozen other common ailments that can make you feel like this. But for SURE -- do not go home and take and aspirin (or whatever) and tough it out. There is something definitely wrong and you need to get it taken care of. So keep bugging your medical people and if necessary get them to send you off the base or whatever they do when they cannot handle something. But get help. Ask for a bone marrow biopsy (BMB) -- it is the only way to definitively tell if you have AML or most other forms of leukemia. We hope and pray that it is not that, and chances are it is not.
But even if it is, no problem -- you are a fighter and you know that there are battles and there are wars. There will be setbacks and it does not matter if you have to take a hit on a few of the battles -- YOU WILL WIN THE WAR. Even if it is the worse form of AML -- we have survivors on this forum who were DXed with some of the worse forms (I do not think we can say just what is THE worse form) -- but there are dozens of different variations and that is part of the problem.
You and we all are part of the solution. We are all one big experiment and even in the worst case scenario we will each one of us know that we contributed to winning the war for others. Each one of our cases adds to the body of medical knowledge that has come so far in just a decade or so. I was DXed in 2009 -- I expect had I been DXed in 1999 that I probably would not have made it. A lot of research and discovery can occur in the space of ten years, and we are all contributing to it. Who knows that they will not have a total cure ten years from now.
Please bug your medical people until you find out what the problem is. And please hang with us even if it is not leukemia -- let us know just what it is -- this is good information for us to be able to help others who might have your symptoms in the future.
We look forward to hearing from you in the very near future. Thanks for coming by -- daveB
Thank you for the very kind and informative responses.
My wife and I are taking a very militaristic and (mostly) rational approach to this. First step is figuring out what is going on. Have appointments with my primary care on Monday and hematologist on Friday. Most likely will get a bone marrow biopsy then.
Posted a time series of my blood counts below, dating back to 2011. My wife and I are both in the science community, so time series help logical thought for us...and hopefully doctors.
We are preparing for the worst right now, but hoping for news towards something much different. Taking solace that while I feel off, I am not sick. Also happy that Red blood cells and platelets are in a good range. Finally, my Navy doctor buddies that i have made through the years say that eosinophillic leukemia is very very rare.
Have appointments with neurology and rheumatology in the future too as the symptoms could be auto immune.
Very comforting to hear from survivors and I agree that looking at it as a big experiment to which we are contributing is a good approach.
Let me know what you think about the blood results...if anything and I will keep anyone interested posted with results.
CBC W/Diff Site/Specimen 05 Jan 2015 0938
WBC BLOOD 22.1 (H*) < r>
RBC BLOOD 5.13
Hemoglobin BLOOD 14.5
Hematocrit BLOOD 43.0
MCV BLOOD 83.8
MCH BLOOD 28.3
MCHC BLOOD 33.7
RDW CV BLOOD 14.1
Platelets BLOOD 267
MPV BLOOD 9.8
Neutrophils BLOOD 6.40 (L)
Lymphocytes BLOOD 14.5 (L)
Monocytes BLOOD 3.6
Eosinophils BLOOD 73.00 (H)
Basophils BLOOD 2.50 (H)
ABS Neutrophils BLOOD 1.4 (L)
ABS Lymphocytes BLOOD 3.2
ABS Monocytes BLOOD 0.8
ABS Eosinophils BLOOD 16.1 (H)
ABS Basophils BLOOD 0.6 (H)
Differential Review BLOOD MANUAL DIFF PERFORMED
CBC W/Diff Site/Specimen 19 Dec 2014 0858
WBC BLOOD 22.2 (H)
RBC BLOOD 5.25
Hemoglobin BLOOD 14.6
Hematocrit BLOOD 44.9
MCV BLOOD 85.5
MCH BLOOD 27.8
MCHC BLOOD 32.5 (L)
RDW CV BLOOD 13.6
Platelets BLOOD 273
MPV BLOOD 8.8
Eosinophils % BLOOD 62 (H)
Basophils % BLOOD 5 (H)
Microcytes BLOOD SLIGHT
Neutrophils Segmented BLOOD 12 (L)
Lymphocytes % BLOOD 18
Monocytes % BLOOD 3 (L)
Platelet Estimate BLOOD ADEQUATE
Pathologist Review CBC BLOOD PATH DIFF REVIEW < r>
CBC W/Diff Site/Specimen 20 Dec 2013 0819
WBC BLOOD 6.4
RBC BLOOD 5.11
Hemoglobin BLOOD 14.3
Hematocrit BLOOD 42.4
MCV BLOOD 83.0
MCH BLOOD 28.0
MCHC BLOOD 33.7
RDW CV BLOOD 13.9
Platelets BLOOD 293
MPV BLOOD 10.0
Neutrophils BLOOD 36.60 (L)
Lymphocytes BLOOD 41.1
Monocytes BLOOD 10.0
Eosinophils BLOOD 10.40 (H)
Basophils BLOOD 1.90
ABS Neutrophils BLOOD 2.4
ABS Lymphocytes BLOOD 2.6
ABS Monocytes BLOOD 0.6
ABS Eosinophils BLOOD 0.7 (H)
ABS Basophils BLOOD 0.1
Differential Review BLOOD MANUAL DIFF NOT PERFORMED
CBC Site/Specimen 04 May 2011 1016 < o>
WBC BLOOD 5.5
RBC BLOOD 5.12
Hemoglobin BLOOD 14.7
Hematocrit BLOOD 43.5
MCV BLOOD 85
MCH BLOOD 28.7
MCHC BLOOD 33.7
Lymphocytes % BLOOD 51.9 (H)
Monocytes % BLOOD 10.1
Platelets BLOOD 340
MPV BLOOD 8.3
RDW CV BLOOD 12.1
ABS Lymphocytes BLOOD 2.9
ABS Monocytes BLOOD 0.6
ABS Eosinophils BLOOD 0.2
ABS Basophils BLOOD 0.0
Eosinophils % BLOOD 3.2
Basophils % BLOOD 0.8
Neutrophils % BLOOD 34.0 (L)
ABS Neutrophils BLOOD 1.9
I am not an expert or even a novice at reading blood tests -- but mine indicate that I am about 80% lower than the normal range in platelets and RBC. No problem -- this has been stable and very slightly improving over the past five years since my chemo. Apparently the bone marrow is actually healing itself, but it is not back to normal.
So the main thing I see is what appears to be a big change over the past year in your WBC. Yes this is definitely something to get checked out and I am glad that you have a BMB scheduled -- or if not, please push them to do it -- the pain in the butt is worth the peace of mind. And the pain is nothing to worry about - easier than most dentist tooth fillings, at least for me. Get them to prescribe something that you can take before it -- like a lortab or something. I cheated and took one before my first one without telling anyone (had some left over). Don't expect that they can give you something on the spot -- too much red tape for that, especially in the military. Plus the fact that you probably need to take it a half hour before you get in there anyway.
My feeling is they are going to find something else, and we are very interested here in finding out just what that something else is. So, thanks for coming back and we hope to hear from you again shortly -- daveB
I am no expert, I can only speak from my experience. My father had AML and I was quite anxious after his diagnosis. As a result and some abnormal labs of my own, I was sent to a hematologist. While I didn't have a bone marrow biopsy, I did have a flow cytometry test. That required nothing on my part but to give some blood. The doctor then ran the flow cytometry, a sophisticated test on the blood cells. He said that it was almost impossible for me to have any sort of blood disorder with a normal flow cytometry. You might want to ask your doctor about this test. Best of luck to you and please keep us posted.
Just wanted to give an update. Had another blood test yesterday. WBC came down to 18500 from 22100. Doctor seems to think that is good, even though eosinophils are still in the mid 70% range. Either way, the total number has come down.
Hematologist appointment on Friday. Can't get here soon enough. Uncertainty is not fun at all.
Be well and holler if you have any ideas.
Very respectfully,
John
Great news. If I were a gambler, I'd put my money on you not having AML. Best of luck - keep us posted.
Let us know what's the deal, we're all interested. And whatever it is we'll be here for support.
DaveJ
I just got back from the hospital. Had a blood smear followed by a bone marrow biopsy. My butt hurts, but it could have been worse. :)
Some abnormality, multi lobed eosinophils were noticed in the peripheral blood. Still waiting on the bone marrow. Keeping our fingers crossed that no clonality is found. If it is, then hoping for a chronic phase instead of a acute one. Doc said that they would call within six hours to let us know if we needed to come back for induction.
I still feel great and red and platelets still rock solid, so I hope the news is good.
Thanks again for listening and for all of the help along this trip. If I have to go in for induction, I will be seeking more advice from the pros for sure.
V.r
John
You do not have AML. Does your assignments bring you to foreign shores. High eosinophil counts are consistent with parasitic infections, allergies, rhematological diseases (immune), adrenal insufficiency (adrenals not working well), and some malignancies (which I doubt here). You need to be evaluated for some type of systemic parasite with blood, stool, sputum, etc. samples. I am happy to say that I doubt you are really a member of our motley crew.
Cliff
I am so glad cliff, our doctor on call, responded with his expert opinion. I believe him when he says you do not have aml. Praying for the same
Julie
Appreciate your input. Yours too Julie.
My doc called a couple of hours ago to let me know that he thought that the chances of AML were low. He couldn't rule it out without the genetic testing. Either way, the good news is that we don't have to go in for induction this evening, which was in the realm of possibilities.
I have traveled overseas, but haven't been to anywhere other than a first world country since Thailand in 2012. Parasites have not been ruled out, awaiting tests.
Doc thinks most likely scenario, after looking at blood marrow and peripherals is either a myleoproliferative disorder or CEL. Again, have to wait for testing.
Looking back on time series of CBC and differentials, he thinks my I have had at least mild eosinophilia for a year. Big thing now is to reduce the eosinophil count to avoid organ damage.
Will let all know when the genetic test come back and if the flow cytometry shows clonality.
I'm just happy I get to sleep in my bed with my wonderful wife this weekend. Thankful for her love and the weekend feeling healthy for now.
John
Karen
Diagnosis not quite here yet, but very close. Looks like some sort of myeloproliferative blood disorder, but not classified as CML or CEL. Don't know the variety at this point, still waiting on a few genetic test. Most have come back negative thus far.
Starting treatment on Prednisone on Tuesday. Hopefully eosinophils come down. Still very high and I don't feel great.
Will post as soon as I hear what variant (if any) I am classified with.
Any advice at this point would be great.
Will be praying for you all.
John