Newly diagnosed

[CLLStone]

I have just been told I have call after going to doctor with afib. My WBC was 388,000 and is now 336,000. They want to start kemo now though my heart seemed my only problem. Should I start or look more at the whole body for answers?

[Cllcanada Top Poster CURE Hero]

Welcome CLLStone

That's a high white blood cell count [WBC], certain could be a treatment indication, but counts by themselves should not initiate treatment.

Are you being treated for A.fib, with a blood thinner?

How are you feeling, any enlarged lymph nodes? I would suggest a CTscan, to see your internal node involvement then based on that a second opinion with a CLL specialist hemetologist, if possible, before treatment.

Irregardless you need a flow cytometry and FISH panel ran before a treatment discussion. Your country will to some extent limit you treatment options as will your general health and age...

How are your platelets and other blood work...

I have had white blood cell count [WBC] counts in the 400 range and other than dropping haemoglobin, felt OK. I know patients in the 350K range that feel great and work everyday and lead fairly normal lives.

Don't know if you are under the care of a hemaetologist, but you should be...

All the best, ask lots of questions...

~chris

[Bubnojay]

Is the doctor a haematologist ?

As Chris says, there are tests that need to be carried out before treatment.

Strongly suggest a second opinion with a CLL specialist who can help you find the treatment which will suit you best. Straight into chemotherapy without knowing more seems a bit reckless.

Wishing you a good CLL specialist.

Best wishes

Bubnjay1

[Hoffy]

Find a CLL specialist. There are a lot of new treatments when you are ready.

CLL Society helps a lot.

Before starting treatment look at all the long term side effects.