My mom just got diagnosed with CLL at 59 - we have questions - thank you for all the support on my previous post!

[Chickenoodlesoup]

1. We live in Southern California - does anyone know a great specialist near by?

2. Her ABSOLUTE LYMPHOCYTES are 9533 - does anyone have similar numbers but they have increased 24% from a month ago when they were at 7732?? Is this alarming?

3. Her IGHV test came back at 6.87% - what does that mean?

4. We are waiting on the fish test?

5. My neutrophil is at 19.1%??? What does that mean?

6. My RDW is 15 which says it’s high??? I’m scared! What does that mean?

7. WBC is 12.44.. does anyone have similar numbers.

Any answers help. Thank you!

[AussieNeil Administrator]

There's nothing of concern in those numbers. More later.

[DriedSeaweed]

Hm.. the CLL Society website looks cluttered lately.

If your mom feels comfortable with it there is a virtual CLL Society meeting Monday March 18th 7-9pm for people in Southern California. You can find other meetings on the website too if you prefer a different day or region. Perhaps people can suggest a doctor near you. You can find lists of doctors on websites but getting a personal recommendation is always nice.

She has nothing to feel uncomfortable about. It is confidential. You can turn the camera off but I usually just frown at my ipad.

cllsociety.org/venue/city-o...

I live on the east coast so I see doctors here. But if I lived in Southern California Dr. Thomas Kipps is someone I would get a consult from if I were just diagnosed.

providers.ucsd.edu/details/...

[AussieNeil Administrator]

1) Dr Thomas Kipps at UCSD has a huge amount of CLL knowledge. profiles.ucsd.edu/thomas.kipps

2) That's a low lymphocyte count for CLL. We have some members still untreated with counts of over 500,000. CLL specialists don't get too concerned about counts below 30,000 as they jump around a fair bit. It's when they go higher than 30,000 that checking doubling time is longer than 6 months is see as an indication that the CLL is becoming more active.

3) Mutated IGHV (a strong predictor of a short or long time to treatment) is classified as ≥2% mutated when compared to germline IGHV in other body cells. 6.87% is an excellent result. (It's also a strong predictor of who is likely to ado well on chemoimmunotherapy, but nowadays we have much better treatments which work well with unmutated IGHV folk.

5 and 7 ) WBC is the total of lymphocyte, neutrophil and 5 other white blood cell types. Concentrate on Absolutes and ignore the misleading percentage. (It can go up for Neutrophil %, simply because the number of lymphocytes went down.)

Ideally you want a slow growing or stable Absolute Lymphocyte Count and enough neutrophils to fight off infections.

6) RDW is the measure of size variability in red blood cells. With CLL it can vary more than usually observed, due to variations in the our red blood cell production. Trends are more useful with CLL. Also keep in mind that 5% of the healthy population have results above or below the reference range limits. Haemoglobin is more useful to track than Red Blood Cell count.

Neil

[Chickenoodlesoup]

How do I lock my posts?

[AussieNeil Administrator in reply to Chickenoodlesoup]

This post and replies explains all about the pros and cons of locking posts and how to do so: healthunlocked.com/cllsuppo...