Watch and wait? How long?

[Mnikc]

Hi its been 5 years of W&W, i am frustrated, one of my symptoms besides fatique is pallor, i look like a ghost, it is pretty much all of the time. I also feel like my memory, mind, cognitive changes.

Ive watched my labs change, my WBC is usually around 11. My blood smear always says same thing, smudge cells with absolute lymphocytosis, chronic lymphoproliferative disorder.

My recent surface antigens,

Cd3 2764

Cd8360

Cd4 2510

Cd8 668

These r the elevated ones.

I also wonder if and when a bone marrow aspiration would give me more info.

Anyone have any thoughts, please share.

Karen

[Hidden]

if your current doctor is not meeting your needs you have to find another.

[GMa27]

I was on W&W 12 years. Felt pretty good. WBC rose to 225k and got anemic with nodes popping up the 11 th year. Had treatment and in remission. Had 2 second opinions.

BMB to help dx. Sounds like you need to have a chat with your doctor. Is he/she a CLL expert? 💕

[JayPay in reply to GMa27]

Where were your nodes showing up?

[GMa27 in reply to JayPay]

On my neck.

Inside my body in various places and a few I could not feel but my doc could under my arm pits.

[AussieNeil Partner Administrator]

Hi Karen,

This post explores the triggers for starting treatment for CLL:

healthunlocked.com/cllsuppo...

With a WBC around 11, you would be considered to have mild to moderate leukocytosis labtestsonline.org.au/learn... and barely into CLL territory. You should be tracking your lymphocyte count with CLL to eliminate the influence of all the other white blood cell types.

CLL specialists don't get all that interested in the lymphocyte count until exceeds 30, when how fast it doubles becomes of greater interest. We have members with lymphocyte counts well over 100 still in watch and wait, so to have that low a WBC implies your CLL is slow growing on that basis alone, bearing in mind that your lymphocyte count is only a partial measure of your CLL tumour burden in addition to what may be present in your spleen, nodes, bone marrow, etc. You might never need treatment!

You mention being concerned about your pallor, which can be used to approximately indicate the degree of anaemia

ncbi.nlm.nih.gov/pmc/articl...

You would have the actual result - your haemoglobin count, in your blood test results. That could also be in part responsible for your fatigue if it is sufficiently low, with severe fatigue one of the reasons for starting treatment, as is your haemoglobin dropping below 100.

Fatigue can have many causes and it may be worth exploring these with your doctor. If the common causes are eliminated, it's most likely due to your CLL. I personally found that getting my vitamin D into the normal range helped, as did light exercise (going for a walk), but often I just had to drag myself to bed to get some sleep.

Bone marrow biopsies are not generally done in CLL unless for a clinical trial requirement or for investigation when something can't be readily explained through other diagnostic means.

Neil

[Mnikc in reply to AussieNeil]

Thank you AussieNeil!

[sun_flower in reply to AussieNeil]

Always the voice of reason

Thanks Neil x good luck minikc