Diagnosed with CLL in October 2022 W&W

[Spike62]

Hello. I am recently diagnosed with CLL (10/22, 13q/mutated) with current WBC of 15k and Lymphs at 10k. I've always had pretty good body weight but since diagnosis, I've been especially mindful of getting all my blood markers in the best possible position to make my body as inhospitable as possible to my CLL, hoping this will keep it as indolent as possible.

These blood markers I pay attention to include, but are not limited to, WBC, Lymphs (of course), RBC, Hemo, HCT, Platelets, Liver enzeimes, B12/Folate, Pancreatic elactase, CRP, Homocysteine, MCV, Cholesterol/LDL/ApoB, glucose, A1C and many others. I also try to exercise everyday. This includes weight training 2x/wk and walking several miles each day. I supplement every day with EGCG and Turmeric for my CLL specifically (paying attention to liver enzymes), B vitamins, Vit D w/K, Digestive enzymes, Zinc, Magnesium and Papaya Leaf Extract.

I'm a frequent flyer to Quest, often paying privately, to see what works and what does not and I try to document any progress and failures. When I feel certain that something has been beneficial for me, I try to share my results with the group in the hope that it may prove useful for someone of similar circumstances/obstacles.

[AussieNeil Administrator]

I know that many will be interested in what you share from your endeavours.

Good to know that you are watching your liver enzymes with EGCG. I couldn't manage more than 2 grams of EGCG without spiking my ALT (see attached) and my AST. Those on the Mayo clinic phase 2 trial of polyphenon-E ( a pharmaceutical grade EGCG extract which is no longer manufactured by Mitsui Norin), were on 4 grams per day and some of them were asked to withdraw from the study because they were experiencing transaminitis healthline.com/health/trans... Even if your AST and ALT are within range, you'll need to keep regular observations in case your liver begins to struggle, perhaps because of something else you've begun taking. Back when I was newly diagnosed, someone suggested I take an over the counter immune booster to help with my neutropenia and dropping that and slightly cutting back on my EGCG intake resolved my transaminitis, but it took a few months. (At that stage, I hadn't learned that claims of immune boosting are typically based on trials showing increased lymphocyte growth/activity - yikes!)

With respect to turmeric, the justification for its use with CLL in combination with EGCG is based on in-vitro testing (watching CLL cells on a microscope slide), where it was found that adding them together didn't work that well - they worked best not synergistically, but when added alternately. Unfortunately, it's very difficult to get a high serum concentration of curcumin (the active ingredient in turmeric), because absorption through the gut wall is poor, after which it is rapidly metabolised by the liver (which is of course absent with in-vitro testing ). A much later in-vivo - human CLL subject trial of specially formulated turmeric to boost gut absorption was rather disappointing healthunlocked.com/cllsuppo... You might want to reconsider your use of turmeric, particularly if your liver function test results are rising.

Neil

EGCG can cause liver damage; watch for spiking ALT and AST liver test results.

[Spike62 in reply to AussieNeil]

Good info. I do take my EGCG and Turmeric twelve hrs apart (am and pm) and will reassess my turmeric consuption especially since my platelets do tend to run low. My liver enzymes with even 4 grams of EGCG have stayed in the low 20's but I tend to still ramp up and down with EGCG just to be careful. Thanks. Good information all around.

[Mining_Guy in reply to Spike62]

I am on a similar supplement regime. I went off it for a quarter, my then reasonably stable lymphocytes spiked. I am back on them and have a full physical at the Cleveland Clinic in a few weeks and it will be interesting to see what my counts will be. Iver the past year or so, I have tried to get all my blood tests in order. My AST was super high and is now quite low and my vitamin D was quite low and is now in the middle of the range. I am watching for possible ECGC impact on my ALT and splitting up my ECGC and Curcumin during the day. At one point I was doing alternate days, now I take one in the morning and one at night just like you. Good luck!