ABSOLUTE LYMPHOCYTE COUNT

[DaleFL]

I was diagnosed with CLL in January 2017. I get my CBC completed every three months. When I was diagnosed, my absolute lymphocyte count (ALC) was just over 5,000. Based on the trend in my numbers, my ALC will have double in a year. Does anyone know whether this will trigger my doctor to begin treatment? I heard somewhere that the ALC doubling time does not require treatment if is under 25,000. I appreciate any info or comments. Thanks.

[Newdawn Administrator]

Hi Dale, a doubling of your ALC under six months would rarely prompt any interest under 30 (30,000) unless there were other indicators such as plummeting platelet and haemoglobin levels etc. Whilst our rising ALC counts are indicative of more active disease, they’re not the only indicator and rarely used as the sole reason for treatment all things being equal.

Your ALC is still at a very low level so doubling in 1year certainly wouldn’t usually trigger treatment discussions. If it does, run quickly towards the direction of a CLL specialist!

Best wishes,

Newdawn

[DaleFL in reply to Newdawn]

Thank you so much for your response. I appreciate it very much. I was diagnosed at MD Anderson by Dr. Thompson. I am going to see him in January. I will bring all my lab work from the time I saw him. I think I am going to ask to see him every 6 months. Waiting a year to a doctor who specializes in CLL is too long for my comfort. Again, I appreciate the info. It is nice to know I am not alone.

[Newdawn Administrator in reply to DaleFL]

You’re in very good medical hands there Dale.

This is an older article but every bit as relevant for today;

cll-nhl.com/2012/12/when-to...

Newdawn

[Hidden in reply to Newdawn]

This is so helpful. I got my latest counts today and my lymphocyte count was 11.27 so I didn't know if should worry about that or not - course I worry sometimes even when trying not to - so thank you for some clarity. My white count is 17.9.

[Tommays56]

Hi Dale

I was also diagnosed in 2017 also and until my ALC got above 15000 they were not allowed to do things like run a FISH test as it was not considered high enough

I have a long history of blood work and my ALC started going above 3900 which in the USA is the high side of normal in late 2014 and very slowly rose to 7800 by April 2017

It then rapidly rose to 15800 by late may and after a few colds and two months of healthy time it settled in around 14000 and for what ever reason is stable at that level

The Rapid rise from April to May really stressed me out as I was just getting use to having CLL and no one really had any idea if it would keep going up

Many things in your blood tests jump around quite a bit and the doctors like to make most decisions based on long term trends unless something came up that really required and ASAP reaction they would just as they call it Watch and wait

Tom

[DaleFL in reply to Tommays56]

Thank you so much for sharing your experience. I think I having a difficult time accepting that the best way to treat my blood cancer is to watch and wait. I see my local oncologist every 3 months. Actually, I see a nurse practitioner. I go into the office, they draw blood for a CBC, then I see the nurse. She listens to my lungs, heart, and feels my lymph nodes. She asks me how I am feeling. I tell her I had strep throat, outer ear infection, and jock itch. Then I am given a new appointment for 3 months later.

I am IGHV unmutated so I have to see the doctor every 3 months as opposed to 6 months. When I go back to MD Anderson in January, I am going to ask if I can have a follow up appointment in 6 months. I am in Florida, but I was really impressed with the Dr. Thompson.

How often do you have your CBC taken? I know each patient is different.

[Tommays56 in reply to DaleFL]

I have also see and endocrinologist For a very long time for a well controlled condition that requires blood work 4 times a year which gave the me the very big collection of blood work to look back at and with my new knowledge see the CLL progress

Currently after the CLL the diagnosis the endocrinologist only sees me every six months as she knows I have my hands full

I was not happy with how the first CLL practice handled my paperwork and changed to a different one and like it much better as all my tests results are charted online so I can view the trends and the Doctor spends time with me at each visit which is now 90 days as he considers me quite healthy

So between my GP and two specialists I am getting blood work 7 Times a year

I well understand the frustration over not being treated but with CLL once they start treating you there is no stoping as at this time it can only be controlled and there is a tendency for CLL relapse and not respond well to the second round of treatment

Interesting enough the first Doctor to raise a red flag was my Denist as I get cleaned every 6 months and in the spring of 2016 and 2017 I started getting abscess in molars that happened very rapidly and he was quite concerned that something was going on with my health that was being missed

[lankisterguy Volunteer]

Hi DaleFL,

I believe you will find that CLL experts use your ALC rate of rise to gage how often you should be tested and examined. As Newdawn says, your doubling time won't matter until your are over 30k.

Treatment won't be considered until you have significant symptoms.

Watch & Wait (or Watch & Worry) is tough to believe, but it has been proven to extend OS (Overall Survival) vs. early treatment for CLL, in several well documented rigorous clinical trials.

You may want to have your local doctor/NP continue your 3 (or less) month visits and share the blood test results with Dr. Thompson. Then when your Red Blood results begin declining and B symptoms or fatigue start reducing your quality of life- then schedule more frequent visits to see Dr. Thompson.

Please see paragraph 4.1 in the iWCLL guidelines bloodjournal.org/content/11...

And you can learn lots from pursuing CLL 101 course here:

cllsociety.org/cll-101/

and especially here

cllsociety.org/2017/04/watc...

and you can even take a mid-term exam here:

cllsociety.org/2016/03/cll-...

Len

[Hoffy]

Until your numbers get above 40,000 which could be a while they say doubling really doesn't matter that much

Also get a second opinion before treatment from a CLL specialist .

There is no need to move quickly at your levels .

Hey CLL Society Web site can help a lot as well

[Saikumarr]

I have a lower ALC 800 - Bio reference range is 1000-3000..

im under going chemo & radiotherapy.. my doctor said report looks good.

Anything to concern?

[Cllcanada Top Poster CURE Hero in reply to Saikumarr]

You have CLL? Radiotherapy isn't used much for it...

~chris

[Saikumarr in reply to Cllcanada]

Chemo& radiotherapy for rectal cancer ... it’s that rd week on going.. btw thank you for quick response..