EGCG , Chaga tea

[Canuck901]

Has anyone tried EGCG? What’s a great brand to buy ?

I know the May clinic was using 2000mgs twice a day

For 6 months In their trial .

Also has anyone tried Chaga mushroom tea for CLL? What’s a good supplier

And has eating papaya and papaya leaf tea help build your platelets ?

Thanks !

[Cllcanada Top Poster CURE Hero]

EGCG in CLL using over the counter supplements is not recommended by the doctor that ran the Mayo trial...

Video here..Dr. Kay

patientpower.info/video/ask...

But some Canadians have tried Jamieson’s

jamiesonvitamins.com/produc...

It list the EGCG content and you will need to calculate how many pills you need to get a theraputic dose...

Check with your CLL doctor first, and be certain to have your liver monitored every 3 months...

Mushrooms .. generally not recommended,some fungi can stimulate B cell pathways...

~chris

[Canuck901 in reply to Cllcanada]

Chaga mushroom is different it’s a tea.

My dads naturopath suggested metagenics Trancor . As it has EGCG.

[AussieNeil Administrator in reply to Canuck901]

Some of us have CLL in which the CLL B-cell receptors are specific to compounds found in fungi. So consuming mushrooms could stimulate our CLL...

[frostbiteapple in reply to AussieNeil]

Could you please provide a reference for which receptors, which mushroom compounds, and what happens?

[AussieNeil Administrator in reply to frostbiteapple]

As I said above, it's the B-Cell Receptors (BCR) on the CLL cell, which for around 1% of us, is stimulated by Beta Glucans, which is a crucial component of fungal cell walls.

sciencedirect.com/science/a...

The amount of Beta Glucans varies by mushroom type. The BCR is the primary means by which CLL cells are stimulated to stay alive and duplicate. The very successful BTK and PI3K inhibitors such as Ibrutinib and Idelalisib target CLL by shutting down the BCR stimulus pathway - the CLL cells die without BCR stimulation.

There's further discussion in this post:

healthunlocked.com/cllsuppo...

As best I can determine, this may only happen if you are IGHV mutated and if your BCR is keyed to fungal Beta Glucans. Problem is you don't know if you fall into this group until you notice your CLL tumour rapidly growing, e.g. lymphocyte count and/or node sizes increasing. The best way to check this out, is to avoid mushroom and probably yeast products for one period between blood tests and see if your CLL stabilises.

This is just one specific instance of the wider issue of taking supplements claimed to boost your immunity. In every single case where I've been able to track down good scientific evidence behind claims for a supplement boosting immunity, it does so by stimulating lymphocytes. Not a good idea when you have CLL.

Neil

[markjeep51 in reply to Cllcanada]

Could you provide a better link to Dr. Kay's video on EGCG. Could not fine it. Would like to hear what she has to say.

Note that I met with Dr. Zent ( one of the authors of the subject phase 2 EGCG study ) in 2013 when he was working at the Mayo clinic in Rochester Minn, where we discussed his phase 2 clinical study. He was my CLL oncologist at the time. Thanks Mark

[AussieNeil Administrator in reply to markjeep51]

We lost Chris last April and Patient Power have unfortunately removed that video from their library. Dr Kay was expressing concerns at the lack of regulation in supplements. The Mayo Clinic study used a pharmaceutical grade product Polyphemon-E after all.

Neil

[Luckyliss]

I asked my oncologist about the mushrooms, vits and probiotics and was told to not take anything that they don’t know may harm my SLL . I alway aire on the side of caution.

[KG2019]

I use chaga and I call it my cup of dirt. It tastes Awful, but if it helps, I'm in.

[boomroad]

Have had CLL for 4 years now. It was detected when my white blood cell count hit 28.000. My WBCC gradually increased over the 4 years. I heard about Chaga and asked my Dr. If it was ok to try it. He gave me the OK. I get blood test every 3 months. I was at 84.000 wcc when I began drinking a cup of chaga at bedtime ever night. 1st 3 months the rise stopped actually dropped a tiny bit. Next 3 month test my WBCC dropped 22.000. Hey I am not stopping Chaga. Thats my story on this Chaga. I believe in it.

[KG2019 in reply to boomroad]

My CLL counts were at 68,700. After taking Chaga, my counts dropped to 40,400 in 6 months of use.

[Canuck901 in reply to KG2019]

Really ? Where do you get the Chaga mushroom tea? What supplier

Do you drink it daily ? I have heard chaga is good for other cancers not sure about CLL

[boomroad]

It is getting hard to purchase Chaga. However I have become able to identify it. I bought a 4 wheel bike to go into the woods. Anywhere white birch thrive Chaga will be present. It looks like a sort of growth on the tree. It can be cut out easily. If you can find a white birch that has a Chaga growth you can go back to the tree in a few years and you will find this AMAZING gift again. Never mind na Sayers this is a gift from nature.