Friday, June 29, 2007

Low Dose Naltrexone

I'm starting a curcumin regimen now, but I have a friend who is trying another "alternative" therapy called low-dose naltrexone (LDN). Naltrexone is an existing prescription drug, FDA approved for treatment of certain addictions, but no longer in widespread use. It acts by blocking opioid receptors in human cells, but in small doses it can also double or triple the body's production of natural opioids, called endorphins.

In some people with certain diseases, including as cancer, those endorphins may be suppressed. According to theory, LDN taken at bedtime restores them during sleep and thereby restores the body's immune system to its normal function. Proponents of LDN actually claim that it can at least halt the progression of a large number of diseases, including myeloma, multiple sclerosis, and HIV/AIDS. For some people, those diseases may be cured. According to those same proponents, there are no significant negative side effects. The cost is modest, less than $50 per month.

Three doctors seem to be the primary proponents of LDN: Dr Bernard Bihari, Dr David Gluck, and Dr Ian S. Zagon. Their names appear at the bottom of their web site, If they are correct, LDN has halted a lot of disease, cured some, and saved a lot of lives.

Naltrexone is now in the public domain, because the patents are expired. Therefore, drug companies have no interest in funding the multi-million dollar clinical trials that might prove the efficacy of LDN one way or another, and apparently the US government hasn't been sufficiently tempted either. So it's up to us again; we can try it and see if it works.

Which is pretty much what we do with the expensive, trial-tested drugs that we otherwise take, like Revlimid and Velcade. We take them and see if they work. I wish my friend well, and will let you know whatever he tells me about his results with LDN.

What a strawberry!
Organic apple, organic plum, organic nectarine, all regular size. Organic strawberry, whopper size.

Wednesday, June 27, 2007

Labs Today

Off to see the wizard, toting a jug with 2.1 liters of urine collected over the previous 24 hours. Wait in the waiting room for about 15 minutes. Arm stick, five little vials of blood, the nurse tells me that the total quantity is about two tablespoons. I doubt it's that much, the vials are so small. She's quick and efficient. I ask her to wrap the cotton ball onto my arm, since I'm allergic to adhesive, and she's glad to do it.

I'll see the real wizard, my oncologist/hematologist Dr AP, on July 5. Then we'll find out what has happened since I stopped taking thalidomide a couple of months ago.

Meantime, the curcumin regimen starts NOW. Two grams today, ramping up carefully to eight grams per day over the next two or three weeks.

Dessert: Organic strawberries, blueberries, blackberries, slight drizzle of honey. Estimated Weight Watcher points = 1.

Monday, June 25, 2007

Curcumin and Nanotechnology

"Colloidal silicon dioxide" is an ingredient in the AFI brand of curcumin with bioperine. So what, silicon dioxide is sand. But a quick search shows that colloidal, in this context, means that this is sand with particle sizes of less than 100 nanometers. A nanometer is one billionth of a meter, which is one millionth of a millimeter. 100 nanometers is considerably shorter than the wavelength of visible light, and only one twenty-fifth the size of a human red blood cell. This is so tiny that it is well within the realm of nanotechnology. Is that a problem?

Maybe so. Three recent press releases by Consumer Reports (here, here, and here) suggest that the jury is still out on nanoparticles for human use. Other consumer groups have also issued warnings. The FDA has not taken a position, nor does it require that manufacturers describe their nanotechnology ingredients as such. Therefore, nanosized colloidal silicon dioxide may be described on the label as "silicon dioxide" or simply "silica."

Well it's just sand, don't we all eat a peck of dirt? Probably so, but everyone who discusses nanotechnology agrees that the properties of materials change when particle size becomes so extremely small. To quote Consumer Reports, "carbon becomes 100 times stronger than steel, aluminum turns highly explosive, and gold melts." In fact, particles this tiny may be able to traverse cell walls and enter cells, possibly affecting DNA or inducing cell death. We already know that breathing silica dust can trigger an often-fatal disease called silicosis. What about ingesting it? One expert has said that nanotechnology has the potential for health risks similar to those of asbestos.

I'm as far from expert as you can get on nanotechnology and how it may affect human cells. But I'm pretty sure that nanoparticles can't hurt me if I don't consume them, breathe them, or spread them on my skin.

Personally, I'm going to stay away from supplements, including curcumin, with ingredient lists that include silicon dioxide or silica. Another likely nano-material is titanium dioxide, used as a whitening pigment and also to be avoided. No doubt there are more. Technology is moving faster than our overwhelmed and underfunded FDA is able to react, so we have to look out for ourselves.

Your comments are invited, pro or con.

Spinach pecan salad
Organic baby spinach, organic apples in key lime juice, blue cheese, organic pecans marinated in pomegranite juice and roasted, all in a pretty new 79-cent glass salad bowl from Ikea. Estimated Weight Watchers points = 3.

Tuesday, June 12, 2007

Rethinking Proactive Myeloma Treatment

My myeloma is still in a early stage, barely even smoldering. Thankfully, it has not grown rapidly; it seems to double about every 18 months. Nevertheless, I have asked my doctor to be very proactive in two ways: (1) Testing for potential problems, and (2) Treating the disease before symptoms develop. Although studies have shown that early treatment does not result in longer survival, my theory has been that early treatment should at least yield a higher quality of life by delaying symptoms like broken bones and failed kidneys.

Mayo clinic, on the other hand, has recently published a new consensus statement outlining a treatment algorithm for newly-diagnosed myeloma patients titled "Treatment of Newly Diagnosed Multiple Myeloma Based on Mayo Stratification of Myeloma and Risk-Adapted Therapy (mSMART". The abstract is here and the full text is here. It divides newly-diagnosed patients into two groups, high-risk and standard risk, and further divides both of those groups again into a class with active (symptomatic) myeloma and another with smoldering (non-symptomatic myeloma).

Lucky for me, I seem to be in the standard-risk group with smoldering myeloma. For this group, Mayo's algorithm suggests NO treatment. If I had started my doctoring at Mayo Clinic, I would very likely never have taken thalidomide, unless as a participant in a clinical trial. I don't know if that would have been good or bad; I took the thalidomide with my eyes wide open and was glad that my doctor was treating me aggressively. But now I'm thinking I'll ask him to be a little more conservative in treatment. Here are some reasons:
  • All treatments have side effects. For example, with thalidomide I had rash, low heart rate, erectile dysfunction, slow bowel, weight gain, and possibly a minor deep-vein thrombosis and peripheral neuropathy. Happily, none of those were show-stoppers, and all but the rash are gone now. However, the next step for me is Revlimid with dexamethasone, which could easily cause more-serious side effects.
  • To some extent, each treatment may be thought of as an arrow in the quiver. Once it's been shot, it's gone. Thalidomide seemed to work at first, but not any more, and it will most likely be unavailable later when I might need it more.
  • Treatments can cause the myeloma to mutate and become more aggressive. I suppose this is why early treatment doesn't actually extend survival. Since my myeloma is progressing slowly now, maybe I'm better off not provoking it unnecessarily.
  • Treatments can cause other cancers. I think that applies mostly to the older, standard chemotherapy treatments like melphalan, but those treatments may be all that remain for me if I use up the other arrows in the quiver too soon.
  • Treatments can even cause the very symptoms that we are most trying to avoid from the myeloma. I know a man whose kidneys are failing because of treatments, not because of the myeloma.
I'm quite content to try curcumin next. It's an unconventional treatment, to be sure, but there is good reason to believe that it might work, more than speculation. Further, it does not seem to carry the risks inherent in most of the prescription treatments. I'm taking two months of NO treatment after discontinuing thalidomide, then getting tests done June 26, for the final report card on the thalidomide. I will start the curcumin later that same day.

I am very interested in opinions of anyone else who reads this. If you see an error in my facts or my thought process, or even if you agree, I would value your opinion. I'm thinking about my life here. Thanks!

Sunshine and Sweet Pea were out a few nights ago. Incompetent at cooking, I had to make do: Picnic Dinner
A banana, an orange, organic strawberries, blueberries, organic yogurt, pistachios, asiago cheese, organic red wine. Estimated Weight Watchers points = 11. The cheese alone is six points.

Saturday, June 2, 2007

Curcumin Arrived

I ordered modest quantities of each of three different brands of curcumin, just to see what they were like. See previous post. I'll start taking it in a few weeks, and by then will necessarily order quite a bit more from one or more of these sources.
America's Finest Inc. Per Caplet:

Per TWO capsules:
  • 1054 mg Turmeric Root Extract
  • 6 mg Bioperine
  • From: Club Natural
Doctor's Best

Neutraceutical Sciences Institute Per TWO capsules:
The proposed amount per day is 8 grams (8000 mg), divided into two or more doses. I may decide to alternate two or three brands, on the off chance that the quality of one brand is not as high as advertised. I already do that with my multivitamin.

The capsules from Doctor's Best brand are sufficiently distinguishable from the capsules from NSI brand that I think they do come from different manufacturing sources. The caplets from AFI are quite different, more dense, and clearly not from the same manufacturing process. All of the capsules and caplets weigh significantly more than the amount of curcumin they purport to contain, a good sign.

Pork chop dinner
Thin-cut pork chops, corn, oven-roasted rutabaga, two kinds of oven-roasted sweet potatoes, strawberry garnish.