I was diagnosed in February with WBC of 29. On W&W but quite concerned to note that my WBC had risen to from 40 in June to 51 in September

[Elizabetha]

and is now at 55. I have been taking Sea Kelp, Zinc and vitamin B 3 supplements to boost my immune system and just wondering if these may be affecting WBC. Probably a silly question but trying to figure out why WBC rising so quickly.

[AussieNeil Partner Administrator]

First a few of facts:

1) You should be tracking your Absolute Lymphocyte Count (ALC) not your WBC. (Your ALC is comprised of the cancerous B-Lymphocytes + T-Lymphocytes and Natural Killer Cells and your WBC includes additional infection fighting cells, which are separately reported in your standard blood test - the Complete Blood Exam (CBE)

2) A doubling of your ALC in a period of less than 6 months is one of the triggers that indicate it could be time for treatment, but only if it is over 30

3) Your ALC can jump around quite dramatically due to infections, etc, so your next test could well be lower.

You are right to consider whether the supplements you are taking could be boosting your WBC, IF this is indeed happening. After all, the last thing you want to do is boost your B-lymphocyte count!

My haematologist tells me that there is nothing I can do supplement wise to boost my immunity (I have neutropenia and hypogammaglobulinemia i.e. low neutrophils and immunoglobulins) and here's an interesting article, not CLL specific, that reinforces that view:

health.harvard.edu/flu-reso...

I'd suggest you drop the supplements unless you know that you have low levels of Zinc and B3 and your haematologist supports you taking them. After all, you don't want to be rushed into treatment because the supplements are falsely boosting your lymphocyte count!

Finally, if you aren't seeing a specialist, ideally a haematologist experienced with CLL, it would be a wise move to get that regular specialist review process in place.

Neil

[lankisterguy Volunteer in reply to AussieNeil]

Neil is right on- WBC is a poor method of telling what is happening with CLL or what symptoms might happen soon. And looking at only 2 or 3 results is also misleading. Many things change WBC, fewer things impact ALC, but even that can give false results. I was trending along with ALC doubling every 6 months (over 6+ tests) but suddenly it shot up from 50k to 110k in less than two months and I got severe fatigue and enlarged nodes & spleen. Dr.tested for all the HHV viruses and found I had reactivated HHV-6. Treatment with Valganciclovir (Valcyte NOT Valtrex) knocked my ALC back down below 60k. The fatigue was greatly reduced but no impact on spleen or lymph nodes. Treatment became optional, no longer critical.

[Elizabetha]

Hi Neil,

Thanks for the speedy reply. I have stated my WBC as the last 2 tests were taken by GP rather than consultant so didn't get the ALC count. Had another test today and back at GP on Monday for the results. She wants to see if there is a pattern before sending me to consultant. I will stop taking the zinc and Sea Kelp and see if that makes a difference.

[AussieNeil Partner Administrator in reply to Elizabetha]

I take it that your GP can only do basic in-surgery testing then? If you have immunity concerns, then you really should be getting a CBE, so you can see what your neutrophil levels are, along with occasional Immunoglobulin testing. (This doesn't tell the full picture, but it's a valuable guide. With CLL, you can have acceptable levels of these immune components, but your immune system may still not work well as evidenced by frequent infections.)

Neil

[Elizabetha]

Thanks Neil, I will now request a CBE. I suspect my GP is not really clear on the condition and will perhaps need to wait until I can see my haematologist for full picture.

[MsLockYourPosts Passed Volunteer]

Different labels in different places, or did you mean CBC, Neil?

[Cllcanada Top Poster CURE Hero]

FBC - full blood count

FBP - full blood picture

CBP - complete blood picture

CBE - complete blood exam

CBC - complete blood count

Different names, different places... the tests are similar, but reference ranges and scale (units) used may be different... for example 125 g/L is equivalent to 12.5 g/dL, or 150,000 to 400,000/ cmm (150 to 400 x 109/liter) etc... but can be reported either way...

It is good to learn or have access to blood work reference ranges...

en.wikipedia.org/wiki/Refer...

[Elizabetha]

Good news. Latest blood count has shown a drop in WBCs from 55 to 49. Now getting monthly checks from GP who is showing more of and interest and more importantly - more knowledge re the condition. Thanks to all who have replied.xxx

[AussieNeil Partner Administrator in reply to Elizabetha]

That is good news that you've seen better than a 10% drop. Good too that you are getting monthly tests, as these will show you whether your CLL has stabilised or perhaps even improved. You need to look for a trend as repeated tests even on the same day can give varying readings. Hopefully you'll be able to drop back to less frequent testing after a few months.

[Elizabetha]

Thanks AussieNeil,

I am a bit less anxious as I feel that I am being taken more seriously.

Keep you posted!x

[john133]

Hi There,

I am recieving treatment for CLL after being diagnosed last May. I was taking all kinds of supplements up until then. But my consultant says supplements are definatly a no no as they play havoc with blood counts.

Other than my Treatment I do not take any other form of medicine, supplements etc.

John