early stage

[Robertaann52]

I have a level of 142 up from118. I feel fine, platelets good, doc not terribly worried yet. Is there any natural way, possibly, that I can lower my white cell count? I have always lived a healthy lifestyle, feel helpless just watching the count go up.

[Newdawn Administrator]

Hi Robertaann,

I can remember freaking out the first time my WBC leapt a bit but it is subject to fluctuation for a number of reasons one of which may be an underlying infection or even stress. It's very frustrating feeling a sense of helplessness about influencing lab results but don't get too hung up on the WBC because it's the ALC (absolute lymphocyte count) and other key counts that your doctor will be more concerned about over time.

I found this article useful but it isn't primarily directed at CLL'ers so please don't ever embark on a course of vitamin supplements without medical advice. They may be fine for the non affected but have a detrimental effect on our impIred immune function.

It does give some pro-active ideas about optimising your general health and immune function in sensible ways though it does sound like you already live a healthy lifestyle. Try to keep the stress under control, I've found it impacts on my levels.

naturalnews.com/028275_whit...

Newdawn

[Robertaann52 in reply to Newdawn]

Newdawn,

I appreciate your suggestions. My other counts are good, Thank G-d and my doctor is not concerned yet. I have always lived a healthy lifestyle & will continue to do so, as my energy is fine. It is just so frustrating knowing what's going on in my blood! Wish I could be more proactive in curing this CLL.

Thanks again,

Roberta

[AussieNeil Partner Administrator in reply to Robertaann52]

Hi Roberta, I know how you feel; it is one of the more frustrating things about living with CLL. Unfortunately for us, the ALC is just an easy measure (via a simple blood test) of the progression of our disease. B-lymphocyte levels in the blood may only account for perhaps 5 to 10% of the total tumour burden, particularly for those of us with a bulky node presentation or the SLL form of this disease. Unfortunately it is much harder to assess how much is hidden away in abdominal nodes, the spleen and bone marrow...

Also, as Newdawn says, the suggestions for improving your immune function in that reference, such as Vitamin C, may actually stimulate B-lymphocyte production. The article also mentions green tea and a study at Mayo Clinic (funded by CLL Topics members) showed that it can help a significant number of early stage CLL patients. You'll be able to find more about the pros and cons of taking EGCG (the active ingredient in green tea) by searching on this site. Note particularly the comment by one of the Mayo Clinic EGCG researchers, Dr Neil Kay "I cannot recommend this because I do not know what is in the over the counter products they are buying": healthunlocked.com/cllsuppo...

Meanwhile be encouraged to keep on with your healthy lifestyle to give your body the best conditions to keep you healthy.

Neil

(I have been taking high dose of green tea capsules with my haematologist's knowledge and it does seem to be helping, though it took me many months before I saw a positive change.)

[Robertaann52 in reply to AussieNeil]

Neil,

Thank you so much for taking the time to respond. Your information was helpful.

Roberta

[ThreeWs]

Hi Robertaann52,

This is probably the most pondered question of CLLers facing the unsatisfying dilemma of having to wait before being treated as signs that our cancer gets stronger by the increase in white cell count.

CLL can vary in white count test results no matter what we do. Often the progression is marked by rapid increase only to fall back. This phenomenon can coincide with a number of conscious efforts we might employ only to give false hope that what we have done is having a positive influence on the rate of progression.

So does this mean that we should become couch potato TV zombies and drink our way into forgetting we have CLL?? Nah.. no fun or sense of control with that. There are supplements where some have claimed temporary reductions in white count but I developed my strategy around the concept of the "Casino's Edge" which basically acknowledges the fact that I had very aggressive CLL and Green Tea extract (EGCG) and Beta Glucan were mere potato chips to my CLL Bear. I took a whole body and mind approach to fortify my strength in all areas to be in the best shape, physically, mentally, and emotionally to face treatment when it came time. I processed and incorporated the idea that I would learn CLL and that CLL would be my teacher for its presence would inform me as to who I was on a level that no other experience had done to date.

I redoubled my effort to practice Gratitude as that is too easy let go in the face of something like an incurable disease that the best specialists in the world can't cure and advise doing nothing until we are looking over the edge of an abyss. Exercise was at the top of my things-to-do list, Tai-Chi twice daily, a three to four mile walk every day, reading and learning how CLL works and how different class of drugs function. You do not have to be medically trained to gain a working understanding of the concepts behind the pathology of CLL or how our growing arsenal of drugs are designed to put the CLL Bear into hibernation. If nothing else, A basic understanding of CLL and your own unique "brand" of the disease plus conceptual knowledge of any particular drug and its efficacy and toxicity can make one a partner with one's Doc in the important decision of treatment when the time comes.

Start by looking up "Autophagy" as it relates to exercise and fasting. You may find it a fit for you in becoming proactive and start you on a path of individualized research for solutions or paths in self strengthening. If you have trouble knowing how to research, just ask, as I and others will guide you.

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[Robertaann52 in reply to ThreeWs]

WWW,

I dearly appreciate your clear and articulate response. You did help.

Roberta : )