RE: swollen glands - Tammy

[Guest guest]

Hi Tammy - first of all, run, do not walk, to a competent oncologist, preferably a hematologist who has experience with CLL.

Hanging out with a local doc, who does not give you info, is NOT the way to handle CLL. Especially if he's telling you that the he's going by monocyte levels to determine your status.

Having said that, your lymph # and % are not normal, but far from scary. Also, the difference between the two readings can easily be just lab work. Elevated lymph counts easily go hand in hand with troublesome lymph nodes.

We have lymph nodes all over, so your symptoms could be caused by swollen ones, or by any number of other things. You need to get yourself evaluated properly.

Have you ever had a scan of any kind (CT, MRI......)? This would determine whether you have a lot of lymph node involvement.

Take charge, Tammy.

Best,

[Guest guest]

Tammy - you may indeed have had it for a long time.

CLL/SLL is a funny disease. If it looks like CLL, you'll have trouble with your red counts.

If it looks like SLL, you'll have swollen glands, and strange lymphocyte counts.

Normally, lymph percentage should be about 30% and neut/gran percentage should be about 60%.

But that changes and the higher your lymph % is the closer you are to the disease (which does not mean you need to go and jump off a bridge :-)

Watch your white count, and watch the percentage of lymphs. Absolute lymphs are the percentage multiplied by the white count. Ideally your lymphs should not above 3, or so, and your percentage should be below 40%.

But do not go nuts with the numbers!!!!

Best,

[Guest guest]

,

Thanks so much for your input on my

question. My Oncologist is also a Hematologist

she just told me that CLL is the good cancer to have (as many believe) and that

it could become aggressive at any time.

But she did not tell me what the parameters are that she is watching

for. I had a CT a year ago, and at

that time she said things looked ok. My neck has been feeling like when you

are sick with a throat infection and you eat something spicy or tart and it

kills your glands, that is what I feel a lot. When I chew food it hurts those glands

also. When would the lymph # and %

become a thing to be concerned about (numbers)? I am still learning about this and want

to be educated and not depend on the doctor to react, I want to be proactive

and know when to be concerned. She

said that she thinks I have had this for a long time. I agree with her from my history.

Thanks,

Tammy

Dx 3/06, w & w,

Re: swollen

glands - Tammy

Hi Tammy - first of all, run, do not walk, to a

competent oncologist, preferably a hematologist who has experience with CLL.

Hanging out with a local doc, who does not give you

info, is NOT the way to handle CLL. Especially if he's telling you that the

he's going by monocyte levels to determine your status.

Having said that, your lymph # and % are not

normal, but far from scary. Also, the difference between the two

readings can easily be just lab work. Elevated lymph counts easily go hand in

hand with troublesome lymph nodes.

We have lymph nodes all over, so your symptoms could

be caused by swollen ones, or by any number of other things. You need to get

yourself evaluated properly.

Have you ever had a scan of any kind (CT, MRI......)?

This would determine whether you have a lot of lymph node involvement.

Take charge, Tammy.

Best,