Tuesday, May 12, 2009

Alternating EGCG and Curcumin - An Update

I decided to experiment a bit on myself, based upon a paper published recently that showed that EGCG and curcumin can have synergy, but only after CLL cells were washed, and the EGCG was given prior to the administration of the curcumin.

Hmmm. Easier to experiment with this than cancer vaccines or ofatumumab (Humax-20). Since I don't have a lab with a newly-minted PhD., I am restricted to trying out substances that are easily available. There are a few out there, and that's why I keep perusing the medical literature, looking for any little angle that might help slow the runaway train that is my CLL.

Well, I alternated the two drugs, changing them every 24 hours. I didn't 'wash' my cells, but I did remain hydrated, which doesn't wash cells but is important to all of us, anyway.

The results have been less than spectacular. My counts are pretty low after my four cycles of FCR, ending early because of persistent neutropenia. (The famous doctor at MD Anderson who said he could give me three years with FCR was off by about 2.8 years...)

My main gauge of success/failure of any treatment is, number one, the WBC count, and two, the size of my massive abdominal nodes. Since my counts are fairly low, I really only have my abdominal node size to go by. I sort of can tell whether things are shrinking or not by how tight my pants are.

I used to be a not-very-svelte 36 inch waist size (there was a time when a 32 waist was loose on me; I think that was the Nixon administration though). After I developed the 11q deletion after my HDMP+Rituximab (high dose steroids with high dose rituximab), my waistline started to morph out of control. After the 36 inch pants became too tight, I opted for the 38, then the 40, and then the 42. So in one year, I gained six inches in waist size without gaining an ounce of over-all weight.

Bummer!!!

Sad to say, even after about three weeks of the EGCG-curcumin-EGCG shuffle, my pants weren't a bit looser. So, I deem the effort a failure.

However, I did feel pretty good during the time, no night sweats, no hot flashes, no increase in fatigue, and my counts didn't suffer.

Why didn't I see better results? Two reasons, I think. First, I have very advanced, stage IV CLL. I've been fighting poor-prognosis CLL for over 10 years now, and I've developed, I'm sure, lots of bad chromosomal changes and increase chemo-resistance.

The second reason, probably much less important, but important nevertheless, is the abysmal bioavailability of both EGCG and curcumin. It's one thing to dump a teaspoon of pretty curcumin in a witch's brew of CLL cells; it's another to achieve an equivalent level of curcumin in one's bloodstream.

The usual trick is to take curcumin with bioperine. One must be careful not to overdo this compound. Too much apparently isn't good for you. The other thing is to dissolve the yellow, highly-stainable curcumin into warm or hot coconut milk. The high fat content of the coconut milk definitely does dissolve this spice. I also add a little bit of alcohol to help dissolve the product, usually amaretto. The latter adds a nice flavor to the concoction. Margaret swears by the C3 complex that comes from Sabinsa corporation. A number of companies use that product to make their offerings that are available retail.

The EGCG I usually use is Teavigo. This is available from a variety of suppliers; I purchase mine from The Vitamin Shoppe, which has a reasonable price for the product, and sometimes offers free shipping for a certain dollar amount of purchased product. I add another EGCG extract with a different formulation just to cover all my bases.

Both are supposedly best taken on an empty stomach. I will tell you that the EGCG is very rough on my stomach, so I do eat something perhaps fifteen minutes after swallowing the pills. It will make me throw up if I wait any longer.

My 'guru' on curcumin is Margaret, who posts on her own Multiple Myeloma blog. She's an older hand at the curcumin business, and has really benefited by using the spice. Her blog, 'Margaret's Corner', is one of the blogs listed on the right side of this blog post. She is a wealth of information on curcumin, including a section on how to get rid of curcumin stains, which I will attest gives anything you touch after you've pulled apart the capsules a very bright, vivid yellow, which will not wash out.

I was taking to wearing an old, ratty robe while making the curcumin mess. My wife gave this robe a pretty pink color after washing the formally white terry cloth with some red shirts. Now this pink robe has several splotches of screamingly yellow curcumin stains on it, that defy all attempts to remove them.

I suppose my entire digestive tract from top to bottom is now fluorescent yellow in color. I wonder if that would show up on an MRI?

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