Re: WBC Doubling

[Guest guest]

Hi - see a CLL expert doctor BEFORE any treatment.

My WBC/lymphocytes have increased this past year from 10/14

to 38/32 but I have no other B symptoms (such as rapid

weight loss, drenching night sweats, enlarged lymph nodes,

enlarged spleen, frequent fevers or infections, etc.).

Therefore my CLL expert docs do not recommend any treatment

at this time.

WBC/lymphocyte counts are not by themselves usually the

trigger for treatment. The other B symptoms also play an

important role in determining when treatment is needed.

That's why a CLL expert doctor is necessary to monitor and

treat CLL. Since CLL is relatively rare the average

local/community oncologist does not have the depth of

knowledge & experience with CLL that the CLL expert doctors

have.

Sounds like it might be helpful for you to re-visit the CLL

basics. A great resource guide for this was just recently

published on this site by Tim Klug (a BIG thank

you Tim for this excellent guide). It's called " CLL Handout

Info Sources " and it's available in the " Files " section of

this discussion group. You can download and print it out.

Mod's note: /files/

This excellent guide has links for listings of CLL expert

docs by area. I suggest you see a CLL expert doctor as soon

as you can.

Good luck - Patti

Hannon wrote:

/message/16239

[Guest guest]

,

Patti is right on. My count is now approaching 200K We have

no intention of starting treatment as I have no other

symptoms. I have had to stop seeing at least three Docs

since having my only treatment in 05. All three insisted I

needed treatment, when thanks to the education I have gotten

from following this list, I knew I did not need. I finally

have a Doc now who is not an expert, but has others to consult.

[Guest guest]

Progressive lymphocytosis with an increase of more than 50%

over a 2-month period or lymphocyte doubling time (LDT) of

less than 6 months is one indicator of treatment. There are

others.

Generally, LDT can be obtained by linear regression

extrapolation of absolute lymphocyte counts (ALC) obtained

at intervals of 2 weeks over an observation period of 2 to 3

months. ALC and white blood cell counts (WBC) are different.

While WBC is an indicator of CLL progression it must be fine

tuned to ALC to have significance in treatment decisions.

Every CLL patient is different and you can't assume

anything... you need to have the appropriate tests.

Here is a PDF file of the current CLL treatment guidelines.

These are used in a general way to determine when treatment

should be started based upon the best experience and

knowledge worldwide. Refer to section 4 -

http://cllcanada.ca/2010/2008_guidelinesCLL.pdf

~chris

[Guest guest]

I was diagnosed with CLL in May, 2009. At the time my

oncologist did all the standard testing, BMB, etc. He kept

telling me treatment when my white cell count hit 50K. I

switched to a CLL specialist in March, 2010 and I am still

on W & W. I will say I did this primarily because of

information on this list and information I gained from

research on the web. My prognostics are all good, and I

will continue on W & W until such time my numbers change.

Best advice I can give to someone is what has already been

said -- get a CLL specialist. The local oncologists, no

matter how good they may be, just do not see enough patients

with this particular cancer and respond to what they read.

Do your homework, be your advocate, and fight for what is

best for you.

B

[Guest guest]

I must chime in as well. My WBC is 322k and my docs at NIH

say I don't need treatment now, but probably in the next

year or so. It's NOT about WBC. There will be many other

factors suggesting treatment as others have pointed out:

declining RBC values (Hgb etc.), platelets and of course

those B symptoms i.e. how do you FEEL. These docs who pick

a WBC value out of the air and say they will treat at that

point are irresponsible.

I encourage every untreated CLL-er to apply to NIH for their

study of untreated CLL patients.

.. find a real CLL expert and breathe a sigh of relief.

All the best,

Lynn

[Guest guest]

Lymphocyte doubling time is not easy to interpret. It needs

to be consistent, not just a one off, since the white count

can go up in response to infection or even vaccination. It

also needs to double in 6 months rather than a year.

Generally don't take any notice of it until the lymphocyte

count tops 30,000. The 100,000 level has no validity and no

evidence to support it. Also don't take the WBC but the

absolute lymphocyte count - there is some evidence that

colostrum might increase T lymphocyte numbers.

Terry Hamblin MD

Hannon wrote:

/message/16239

[Guest guest]

With in my first two years of dx with WBC at 30,000 my

doctor told me we usually treat at 30,000. I changed doctors

and had 14 more years of W & W while feeling fine doing well.

Not until my WBC was 289,000 and was crowding out the red

blood cells (declining RBC) did I have my first treatment.

It was different the second time. My WBC was not nearly that

high when treatment was required by ALC doubling in 2 month

period. We didn't hurry even then. I started about 6 months

after that. The RBC was declining.

YuVonna