Leukemia: I may be in the wrong community. Is... - CLL Support

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Beth1982 profile image
16 Replies

I may be in the wrong community. Is this community for leukemia?

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Beth1982 profile image
Beth1982
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16 Replies
Cllcanada profile image
CllcanadaTop Poster CURE Hero

This is a support community for Chronic Lymphocytic Leukemia, actually a sub type of Non-Hodgkin's Lymphoma.

So to answer your question...yes and no...there are many leukemias all quite different, which one are you looking for?

~chris

Beth1982 profile image
Beth1982 in reply toCllcanada

I just have basic questions about diagnosis and symptoms.

Newdawn profile image
NewdawnAdministrator

Hi Beth,

I notice from your other posts that you've just come out of hospital and may possibly have a diagnosis of lupus or RA and that you unfortunately also appear to have pernicious anaemia and anxiety. You seem to be having a tough time getting a definite diagnosis following a range of symptoms. Has anyone suggested you may have some form of leukaemia or is it just a condition you've considered as an undesirable possibility and fear having?

Newdawn

Beth1982 profile image
Beth1982 in reply toNewdawn

The doctor in the hospital said that I would have to have leukemia ruled out before they could diagnosis lupus or RA. They called and said the RA and ANA were negative. My WBC and Platlets have been flagged 4 times since April for being low and now everyone is looking at that. I just want an answer and to feel better along with peace of mind.

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toBeth1982

There's a standard blood test called Flow Cytometry that will identify whether you have a leukaemia and if so, which of the 100 or so different types. I expect that's being checked for you as well as (more likely) other tests to find if there's another cause for your abnormal blood counts. Leukaemia is actually too many blood cells, not too few, though it can suppress one or more of platelet, red blood cell and some white cell counts in the later stages.

Hopefully your doctors will find a much more easily addressed cause than leukaemia.

Neil

Beth1982 profile image
Beth1982 in reply toAussieNeil

Thank you... My RBC is normal range. My WBC drops and comes up and drops again, same with my Platlets.

fayeander profile image
fayeander

Hi Beth, I hope your doctors can find the problem soon. It is certainly no fun when you feel horrible and no one seems to know why. Hang in there and stay positive! The positive attitude is the greatest part in getting and feeling better. Prayers for you!

Beth1982 profile image
Beth1982 in reply tofayeander

Thank you!

6137L profile image
6137L

Beth1982 your very welcome to this site it's good. It deals with CLL type leukemia xx

Beth1982 profile image
Beth1982 in reply to6137L

Thank you!

bronx77 profile image
bronx77

Hi Beth

This is the 1 st time I've read any of your posts. I don't know which country you are in

Have you had a bone marrow biopsy?? And a Cytogenetics test of your marrow That should be the starting point of a definitive diagnosis

The Cytogenetic test will highlight any mutations you have Any mutations found will classify your exact illness

There are other types of anemia that are rare one being Aplastic Anemia there are 3 stages of it It affects platelets red cells and white cells it is very difficult to diagnose and needs special tests

There is something called Mylodisplatic Syndrome (mds) this also affects your blood counts and is a precursor to AML Leukemia

I havent seen your blood results but your MCV and MCH readings will show the level of abnormal cells in your blood

Are you seeing a specialist Haematologist ?? It sounds to me like you should

I hope you get some answers soon a good hospital in the UK would have done so in about 3 to 4 weeks for the more difficult illness to diagnose

If you let us know which country you are in maybe we can make a few suggestions

Best wishes and good luck

Kevin

Beth1982 profile image
Beth1982 in reply tobronx77

I'm in the United States. I can't seem to get any answers. They are referring me to a rheumatologist. I have not had a bone marrow biopsy.

My MCV is high, MCH is in normal range. ALT is low, WBC low, Platlets low.. Vitamin D low.

bronx77 profile image
bronx77 in reply toBeth1982

Hi what is your MCV reading your ALC your Neutropills Platelets and haemoglobin readings

The only way to rule out leukaemia or other blood disorders is a BMB the best heamo hospital on the east coast is the Sloan Kettering Center New York or theSidney Kimmel centre at the John Hopkins

Regards Kevin

Beth1982 profile image
Beth1982 in reply tobronx77

MCV 92.6

ALT 8

Platelet 115

WBC 4.7

HGB 13.1

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toBeth1982

Hi Beth,

None of your replies (including mine) have been from medically trained members and we really can't help you with specific medical information that will help you work out what is causing your low platelets (technically called thrombocytopenia), as much as we might want to. This is the only result you have reported to date that is outside of the normal range, which at 115, is below the normal range of 130 to 400, but still at a safe level. (Ranges depend on where you live and the testing laboratory, so your normal ranges - which should appear on your blood test results printout, may vary slightly.)

Low platelets can be due to a wide range of causes, including auto-immune disease (which is why you are being referred to a rheumatologist), some prescribed drugs and even some foods! It's probably not due to a leukaemia given your other reported results.

You need to work with your specialists to find out what is causing your blood disorder. Our community supports just one leukaemia, which is most commonly diagnosed in older people, with the median age of diagnosis being around 71. Bronx77's wife has another leukaemia, AML.

Your haemoglobin is in the normal range for a woman (12.1 to 15.1), so the additional red blood cell tests MCH (Mean Corpuscular Haemoglobin) and MCV (Mean Cell Volume) probably aren't relevant. In any case, your 92.6 MCV is safely in the normal range, which is 80 to 98.

Your white blood cell count (WBC) of 4.7 is also within the normal range 3.8 to 10.8. You may have an imbalance in your differential white cell count - the contributions made by the various different white cells, but your doctors will have checked the contributions of lymphocytes, neutrophils etc to see how these vary from the normal ranges. These can go out of range when you have an infection, so your medical team will have been observing what's happening over time with these.)

Before doing any cytogenetic tests a specialist first needs to find out which blood cell type is causing problems. You may need a bone marrow biopsy (but it's not necessary to confirm a CLL diagnosis) and if you really want to know about experiences with those, a few members have reported their experiences. Personally I recommend you don't bother until you are told you'll be having one.

Please let us know when you get a diagnosis and what that is.

Neil

Beth1982 profile image
Beth1982 in reply toAussieNeil

Thank you!

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