Any experience with Chinese or Alternative therapy (Green tea EGCG) for CLL/SLL results

[jacobbarnea]

CLL/SLL found during prostate cancer surgery at Jan 2009

Now facing therapy because increased lymph size and WBC 17300

and decrease of HGB 11.3 +PLT=84000

ZAP70+ & CD38 FISH 13q -55% & 11q =35%

No night sweating or fever

Was recommended for light FCR

or from other MD Bendamustine

The issue of less side effects but to consider the FISH issue

[AussieNeil Partner Administrator]

Thanks for including information on your diagnosis and some pertinent blood test results.

I've been taking high concentrations of green tea for four years now with my haematologist's knowledge and after some initial scepticism, acceptance that it may be helping or at least isn't doing any harm. That's after I had to reduce the dose because a couple of my liver function test results shot up - one got to nearly double the normal upper range. That reading took a month to drop back into the normal range and over 3 months to return to close to what was normal for me. You don't want to mess with your liver - particularly if you need treatment!

While EGCG has been shown to reduce lymph node size in a Phase II scientific study undertaken at the Mayo Clinic, only patients in Rai stages 0 to II were enrolled. About a third of these patients had sustained drops in their ALC of at least 20% and about two thirds had at least a 50% drop in their overall lymph node volume. Abdominal pain and nausea were commonly reported side effects. The abstract of the paper presented at ASH 2010 concluded "EGCG containing green tea extracts may have potential as disease stabilizing agents in patients with early-stage CLL". (Note the "early stage" proviso.)

Frustratingly, some CLL patients taking EGCG/Green Tea after this positive result reported that it affected their platelet function, but the Mayo Clinic didn't proceed with the hoped for Phase III trial, so we don't know any more. You don't want to jeopardise your life due to the suppressive effect of chemotherapy on your platelets being compounded by an alternative therapy if you suddenly have to start treatment. (If you were taking EGCG and it affected your platelet function, you'd have to wait for the EGCG to clear out of your system and new platelets to replace those affected, which would be at least a week.)

Given the above, I'd be very very cautious about starting any alternative therapy now, given your low platelet levels and the potential further impact chemotherapy can have on them. If you do decide to try an alternative therapy, to state the bleeding obvious (pun intended), DO keep your medical support team informed.

Something to bear in mind when evaluating alternative therapies: B-Lymphocytes are very easily killed outside their protective environment in the body, so 'in vitro' results aren't much use in determining whether something will actually be beneficial. Whatever you take has to survive the digestion process and get into the blood stream at high enough concentrations to do any good. There is also the question of dose and purity - what else are you taking (heavy metals, pesticides, etc) besides the active ingredient? One of the reasons chemotherapy is expensive is because of the controls and monitoring.

Neil

[jacobbarnea in reply to AussieNeil]

What is the better therapy when the

ZAP70+ & CD38+ positive : FISH 13q -55% & 11q =35%

I was recommended to try light FCR and from other MD- Bendamustine

any knowledge about risk and benefits

Where I shall face less side effects ?

[Cllcanada Top Poster CURE Hero]

You have a mixed karyotype from the FISH results...13q and 11q. Regrettably, nobody knows what side effects they will experience with treatments and comparing side effects with other patients is pretty much useless...because we are all different.

I'm surprised they recommended Bendamustine rather than combine it with rituxan... it is more commonly used in combination... as BR. You might ask your doctor about this...

~chris

[splashsplash]

I found that using travel sickness wrist bands for nausea really helped. They work by an embedded bead pressing on the acupuncture point for nausea - three finger width up from where your wrist begins. I found they work for any nausea - sea sickness, pregnancy sickness or chemo sickness. They are standard issued in the navy, so definitely do work and cant do any harm if they dont. Buy them in any chemists and I kept them on day and night for the six months of chemo.

[ThreeWs]

When I was diagnosed in Sept of 2006 I waited for 4 monthly blood monitorings to get an idea of my progression. I then did escalating EGCG both with lozenges under the tongue and capsules over a period of 8 months keeping a plotted record of my tumor growth. I was a 13q del. 6+% IGHV mutated CD38 neg but a ZAP-70 58% pos. patient. MY result was bulkier nodes, rapidly increasing ALC (Absolute Lymphocyte Count) and a much thinner wallet (-;

Does not mean it won't work for everyone but be sure to plot your progression as short-term observations based on weeks or even a couple of months are deceiving because rates of progression vary even when patients are not on EGCG. I got up to a little over one gram before noticing liver pain associated with elevated liver enzymes. Within days of quitting all EGCG all pain was gone and enzymes normalized.

WWW

[Goggler2]

I know this is an older post but I'm new here. I was dx in 2007, w&w since then, still stage 0. One therapy I use (with my hematologist knowledge) is a TCM (traditional Chinese medicine) herbal tea daily. Don't know if it helps but I don't know that it doesn't. Might be like snapping your fingers to keep the elephants away! several folks on the old yahoo CLL forum swore by it.