My Naturopath

I saw a naturopathic doctor today, for my first time, Doctor HH. I already knew Dr. HH from other circumstances, and had recently discovered that she is has a specialty in cancer and is a member of the Oncology Association of Naturopathic Physicians. So it was high time that I spent the effort and money to hear what she might have to say about staving off myeloma. The expense is actually quite modest.

We talked about a LOT of things, including some issues other than myeloma, and I'm still digesting it. Dr. HH isn't like my conventional doctors, who tend to listen to the problem and then prescribe a specific treatment and walk out the door. Dr. HH apparently believes that I already know a little about the potential treatments (the jury's still out on that), so she more or less considered this a teaching session. She frequently checked in ("do you know about so and so?"), then explained if I didn't and amplified if I did. She also took notes for me, and did write down several specific suggestions, but I probably should have been the one taking notes. Actually, both would be best. We discussed several health issues, and then I did a bit more internet research; here are a few items specific to myeloma:

• EGCG, from green tea, inhibits cancer growth and induces apotopsis (normal programmed cell death) in cancer cells. Dr. HH suggested 1,650 to 1,800 mg per day. That's a lot. Here is one of several sources of EGCG. These contain 350 mg of EGCG per capsule.
• Genistein is a soy isoflavone which can act as an antioxidant, and more importantly, can inhibit the uncontrolled cell growth of cancer. It may also reduce bone loss, which of course is beneficial to myeloma patients in particular. Here is a NLM resource page. Dr. HH suggested 40 to 300 mg per day. I have not yet found a good source for genistein alone, without an assortment of other soy isoflavones. I may ask the doctor about that.
• Quercetin is a highly active flavonoid which is also a good anti-inflammatory agent and a powerful antioxidant. More importantly, it has significant anti-tumor properties. I have been taking 1000 mg of quercetin, but Dr. HH suggested up to 4000 mg. I'll do 3000 first, and if no reaction I will increase it to 4000 mg. This is a good source.
• Resveratrol is another powerful anti-inflammatory and anti-cancer agent, with other purported health benefits such as anti-aging. Dr. HH suggested 100 to 400 mg per day. I am already taking 400 mg per day, in two capsules from this source.
• Vitamin K has a reputation for helping with blood clotting and improving bone strength, which I definitely need, but it also can promote normal cell death in cancer cells. Dr. HH suggested 5 to 10 mg (not mcg) per day, with the highest possible fraction of K2 and the remainder K1. Here is the best brand I've found so far.
• Vitamin D inhibits replication and induces normal cell death of cancer cells. For a normal person a recommended daily dosage might be 2000 IU, but for someone fighting cancer it might be 6000. Here is one source of many.

Here are a few items that were discussed in another venue:

• Medicinal Mushrooms are a very ancient remedy which can reduce cancer cell proliferation, activate natural-killer cells, and actually protect against the toxicity of chemotherapy. Shitake mushrooms were mentioned, at a dosage of 1500 mg twice daily between meals. I have been taking Reishi mushrooms, but at a much lower dosage. I think I will continue with the Reishi, from this source, but take at least four capsules per day.
• Selenium stimulates the activity of natural-killer (NK) cells and has been associated with a 50% reduction in risk of mortality from cancer. It has been shown to help fight cancers of lung, colon, prostate, stomach, esophagus, liver, and therefore is likely to help fight others. Suggested dosage: 200 to 400 mcg per day. Here is one inexpensive brand, and here is another
• Coenzyme Q-10 is an antioxidant and has protective properties. It has been shown to protect the heart from the effects of adriamycin. Dr. HH suggested at least 200 mg per day for me, for treating headache. I have been taking 100 mg per day, but may increase it to 200 mg. Bioavailability is an issue with CoQ-10; I use this brand. Life Extension claims that theirs is even better.
• Melatonin is an interesting hormone that can have a lot of different effects on the body. According to a web page of the Mayo Clinic: "It has been proposed that melatonin may benefit cancer patients through antioxidant, immune-enhancing, hormonal, anti-inflammatory, anti-angiogenic, apoptotic, or direct cytotoxic (cancer cell-killing) effects". That same web page also states: "Results have been mixed, with some patients stabilizing and others progressing." One of the sources of melatonin capsules is Life Extension, with this disclaimer: "Patients with leukemia, Hodgkin’s disease, or lymphoma should avoid melatonin until more is known about its effects on these forms of cancer." Since myeloma is a variety of non-hodgkins lymphoma, I wonder whether to try this or not. Some sources speculate that it might not be the best idea to stimuate the immune system, as melatonin does, when the cancer is IN the immune system, as it might thereby stimulate the cancer. Further, it seems to me that the means by which melatonin benefits cancer may be similar to the action of low-dose naltrexone, which I am already taking in any case. More research needed here before I start it.

Some other hints:

• Stop taking extra Vitamin C two days before blood tests, because it can artificially raise the creatinine count and suggest kidney problems where there may be none;
• Do the same with calcium supplements, to avoid artificially-high calcium readings;
• Take your weight in pounds, divide that number by two, and that is the number of ounces of water to drink every day;
• Curcumin: Eight grams per day is an appropriate dosage;
• For bones: do resistance training of the muscles that connect to those bones which especially need to be strengthened. In my case, since I'm a runner, that probably means upper-body muscles surrounding the spine, ribs, and arms; and
• Read up on this study in which pomegranite extracts were used to cause cancer cells to revert to their normal states. What a cool concept! The extracts may eventually become available as prescription medicines, and possibly as supplements.

Next: I'll re-read these notes and decide on additional supplements to take for at least the next six weeks before going to Mayo Clinic. When I've decided, I will post the entire new regimen, for what it's worth. I have more questions for Dr. HH too, and will probably go back to see her again soon.


Organic salad greens, Maytag blue cheese, pecans, avodado, hibiscus blossoms, kiwi, raspberry vinegar.

Humpf!

Disappointing Test Results.

Last October my new "everything including the kitchen sink" self-treatment regimen seemed to be producing results, with a significant reduction in IgG from September to October, and a slight reduction in "spike."

Yesterday I received the results from the last nine weeks on the regimen, and those results are not as encouraging:

• IgG up 11.5% to 3000 mg/dL, near the high September level,
• SPEP monoclonal protein (SPEP) is up 11% to 2.05 g/dL, an all-time high, and
• For the first time ever, slight amounts of lambda light chains were found in my urine.

I hoped and almost expected those numbers to go down, not up, so this is a disappointment.

However, the news is not all bad. I have a beer here, but I'm not crying in it :-) Calcium remains low, as does creatinine, both of which are indicators that the myeloma is not yet hurting me. Red cell count is still slightly below the normal range, but up a little from October, and it has always been low. Hemoglobin is fine, as are all the rest of my CBC values. I have none of the C.R.A.B. symptoms. Graphic charts of key test results are here and a huge table with lots more test results is here.

When I look at the charts, it appears to me that even if the myeloma is still increasing despite the kitchen-sink regimen, the increase may have slowed. Two data points are not enough to make this trend clear, but it's a hopeful thought and we live in a world of hope.

My oncologist wants me to start a new regimen of Revlimid and dexamethasone (dex). He suggested a rather high dose to start, in fact, 40mg Rev for 21 days of 28 (if I recall correctly - possibly it was 25mg), and 40mg dex four days on and three off. We discussed the results of the ECOG study which showed that low-dose dex was better in every way than high-dose dex. I declined treatment for now, and told him that I will go to Mayo Clinic in Rochester for a consult. He accepted this very openly, and said that he will be glad to continue to work with me in any way that I find helpful. He's a good guy. I have made an appointment at Mayo for early March, with a doctor that I have met in the past. Happily for me, Mayo is just a 90-minute drive away. Until March I will continue the regimen that I have been on.

My oncologist again expressed some surprise that I still have the energy and ability to run, considering my test results. He has 60 myeloma patients now, and clearly believes that my proteins are going out of control. Nevertheless he has always been supportive of the running, for which I am grateful. Interestingly, when I called Mayo, I told the person making my appointment that I was a marathoner, and later at the end of the call she too said "keep on running!" Last night I was feeling a little mopey and didn't really want to do the 12-mile run that was on my schedule, but I did it anyway and felt quite a bit better afterward. Running is good, life is great!

We also discussed the connection between celiac disease (gluten intolerance) and myeloma. He agreed that there is a connection, and remarked that there is also a connection between celiac disease and Waldenstrom's macroglobulinemia, in which the characteristic monoclonal protein is IgM rather than IgG or IgA. We told him that we were now eating a gluten-free diet, and asked him whether I should get the antigliadin antibody test. He looked skeptical until I mentioned that I have a son with celiac disease, and then he said "we can do it today!" The blood is drawn and I hope to get the results within a week.

I can think of two changes in my habits between the five weeks of apparent success ending in October and the less-successful nine weeks ending after Christmas:

• I cut the amount of naproxen sodium (Aleve) that I use to manage headache in half, to one 220-mg capsule per day, because the low-dose naltrexone seemed to help the headaches too. There is some suggestion in the literature, though, that NSAIDs like Aleve might actually have a modest beneficial effect against the myeloma because of their influence on COX-2. I'm well beyond the extent of my knowledge here, but will go back to two Aleve per day for the next two-month period just in case it makes a difference.
• We changed our diet to eliminate nightshade vegetables, including peppers and tomatoes, in hopes of further reducing inflammation. However, tomatoes have some very beneficial nutritional value as well - in fact they were designed to be eaten and to support animal species, as a way of propagating their seeds. This benefit may not actually accrue to humans, but nevertheless I will go back to eating some tomato, and peppers too, especially in cooked form, particularly as organic salsa or pasta sauce but probably not as catsup. Besides, I like tomato and it is the only thing I have really missed in my recent diet. Sunshine, my beloved dietician and cook, seems to be OK with this.

In addition, Sunshine came across a 2004 University of California (Berkeley) study indicating that 500mg of vitamin C daily reduced the level of serum c-reative protein (inflammation marker) in volunteers by 24%. I have not been taking vitamin C, except in food and the modest amount in my daily multivitamin, but will take 500mg from now on.

My apology for posting this so late. My grandson was in town until yesterday afternoon, and when there is a time conflict between him and blogging, you know who wins! :-)



Friday's (today's) breakfast: Organic oatmeal, blackberries, banana, Don's fruit/berry/nut mix, Hershey dark chocolate, organic fat free milk.


Thursday's salad: Organic salad greens, cucumbers, avocado with lime, Maytag blue cheese, macadamia nuts, blueberries, raspberry vinegar.


Thursday's dinner: Wild-caught Alaskan salmon, organic green peas, organic pitted dates, Hershey dark chocolate. I went back for seconds. Not shown: an excellent oatmeal stout.

Eat Dirt!

Actually.

I was in the office of a naturopath yesterday and heard her recommend Terramin for rebuilding injured bone. I'm having some trouble locating a really good reference for this, but the rumor is that NASA funded a study back in the 1960s showing that Terramin (calcium montmorillonite) might help astronauts avoid bone loss in weightlessness, whereas calcium alone did not seem to help. I've located a reference to animal studies which seem to demonstrate the point.

I have no injured bones, but the absolute density of the bone in my femurs has declined from about 0.96 to about 0.89 grams per square cm in the three years from 2004 to 2007. Technically I'm in osteopenia, the stage before osteoporosis. Neither my oncologist nor my primary physician is particularly concerned about this decline, however, and neither wants to prescribe a bisphosphonate (e.g. Fosamax). Nevertheless I would like to halt the decline if possible. I have been taking 1200 mg of calcium in the form of calcium citrate fairly regularly during those years, so something different is required.

Thus I bought some Terramin. It's dirt that you can eat, from the desert of California. The claims are many: Body cleansing, trace minerals, bio-available calcium, on and on. There's plenty of hype here. I'm a skeptic, but in the spirit of doing all that I can, I'm actually eating a heaping teaspoon of dirt every day. Well, for the last two days, but I expect to continue this until the next bone density measurement, unless persuaded otherwise.

So far I have taken the dirt in juice. I put several ounces of pomegranite juice in an eight-ounce glass, mix in a heaping teaspoon of Terramin, then fill to the top with sparkling water. The dirt is a very fine powder which mixes well in water, but is nonetheless gritty in the teeth. I need to swish with water (beer is better) after taking this stuff, or eat something. It says take it on an empty stomach, but I can't imagine what difference that would make so I'll take it in whatever manner is least objectionable.

So that's the dirt from Lake Woebegone.

Merry Christmas and Happy New Year to all!

Treatable But Not Curable

NBC Nightly News broadcast a story about myeloma Wednesday, December 13, 2007. This MSNBC video shows that story, with some discussion by Dr Brian Durie of the International Myeloma Foundation, and goes on to describe myeloma and its treatment in more detail.

Fighting multiple myeloma

Low Dose Naltrexone for Headache

This post is not really about myeloma.

For thirty years or so I have had chronic headache. If I take nothing for it, I have a headache almost all of the time, often so severe that it destroys all enthusiasm for life. I have gone to neurologists, and been treated for sinus infection and on and on, with no result. Happily, though, the headache responds well to pain relievers. Over the years I mostly used acetaminophen and ibuprofen, then got excellent relief from Vioxx, which to my disappointment was soon taken off the market. Since then I have used naproxen sodium (Aleve) with good success. Taking two tablets per day, the maximum non-prescription dosage, the headaches are few and mild.

Then two months ago I threw "everything including the kitchen sink" at the myeloma. "Everything" included low-dose naltrexone (LDN). Naltrexone is an "opioid receptor antagonist," a generic prescription drug used to treat addiction. It blocks the effects of opioids. Taken in very small doses, though, naltrexone seems to tell the body that it is not producing enough endorphins, the body's own opioids. The body responds by producing more endorphins, which is thought to help normalize the immune system. My cancer markers did go down a little at the last test, so it may be working. We'll know more on January 3.



Whether or not it's helping with the cancer, there is another significant benefit. Soon after I started on LDN, which is taken at bedtime, I noticed that I wouldn't get a headache in the night even if I forgot my nighttime dose of Aleve. So I stopped taking the nighttime dose, and now only take one dose per day, in the afternoon, with no more headache pain than before, maybe even less. This is very good news, because long-term use of Aleve can put several different body organs at risk. Cutting the dosage in half should reduce that risk considerably.

The "kitchen sink" treatment also included a change in diet, with elimination of gluten. It is possible that I have an atypical gluten intolerance, and that gluten causes my headaches, in which case the improvement would be attributable to diet rather than LDN. I discount that, however, because: (1) the gluten is entirely gone but the headaches are not; and (2) the LDN produces some other very identifiable effects, including a very sound sleep. Thus my body is clearly producing extra endorphins at night, and a natural side effect would be less pain. I know this from running, which also produces endorphins; I never have a headache while running.

The LDN website makes many claims about the benefits of LDN, but oddly, doesn't mention relief from chronic pain. Some questions & implications:

• Can LDN help with other kinds of chronic pain? (For obvious reasons, it cannot be used in combination with narcotic pain relievers.)
• Can LDN be used to treat depression exacerbated by chronic pain?
• If I took LDN twice a day, could I eliminate Aleve altogether? I can easily test this possibility, but not right now because it might upset my myeloma treatment regimen.
• Do you suppose that thirty years of pain relievers contributed to my myeloma?
• What are the risks of long-term treatment with LDN? According to MedLinePlus an overdose can cause liver failure, but LDN is by definition an underdose.

I'm no more afraid of the long-term consequences of LDN than I am of Aleve. Even if, in the final analysis, it doesn't help treat the myeloma, I think I'll try to get a prescription to LDN for the headache.

Weighty Question

Over the past five or six weeks my weight has been dropping, now down to 144 and change, which is the lowest in perhaps 30 years. A very appropriate weight for me I believe. Most people would celebrate this, and I do too, sort of, but I’m logging it just in case it’s a symptom.

It does coincide with my return to running, and I have run two marathons during those weeks, but in the past my running has not caused that much weight loss.

It also coincides with the new myeloma treatment regimen which includes a new drug (LDN), increased supplements, and a substantially changed diet. Those things are most likely the cause. If so, it puts me in the happy position of needing to eat as much as I can, perhaps more than I want, because I don’t think I should lose any more. I can hear you say "poor baby!"

EXCELLENT Test Results

Yippee! Ok Don, calm down. "EXCELLENT" would be "it turns out you really don't have cancer after all." So these test results are just VERY GOOD! Can you tell I'm happy?

This was a short interval, too, only five weeks. Some important results:

• IgG is down 13%, from 3110 to 2690 mg/dL. My IgG had not declined in the previous eight sets of tests, in fact increasing linearly and predictably for more than two years;
• Spike (the SPEP test) is down slightly, from 1.90 to 1.85 mg/dL. This is not highly significant, because the SPEP does bounce around, except that this is the second DOWN bounce in a row and it has not bounced DOWN in two tests since the Big Bang.
• Calcium dropped WAY down, from 10.4 mg/dL (slightly over the normal high range) to 9.7, perfectly normal. This had been the only C.R.A.B. symptom that seemed to be closing in on me, but it has backed away.
• Creatinine is the lowest I have seen it in my four years with myeloma, down from 1.2 last time to 1.0 mg/dL. It is an important indicator of kidney function, another of the C.R.A.B. symptoms, though it wasn't out of range at 1.2.

I will post the full set of results, with graphs, on this blog by tomorrow night, but wanted to get out the news right away.

How did this happen? Heck, maybe it's just a glitch, but I like to think that the downturn was induced by some of the things I'm doing. If so, I give a lot of the credit to my friend Margaret for her work on curcumin and other supplements, plus her work on inflammation. Credit also goes to my friend Max (not his name, but he knows who he is) for putting me onto low-dose naltrexone. Further credit goes to my ever-loving sweetie Sunshine and my daughter Sweet Pea for feeding me properly, as described below.

Here is the regimen that I have been on for those five weeks (the "everything including the kitchek sink" approach):

• Curcumin 7600 mg per day in four equal doses at approximately equal intervals. Of that curcumin, 6000 mg is "normal" 95% turmeric extract, and 1600 mg is the new Life Extension Super Bio-Curcumin, which they claim is about seven times as bioavailable as normal extract. For this, thanks to Margaret and many others.
• Low-dose naltrexone (see my previous post about that here). This is a prescription drug taken each night at bedtime, consisting of 4.5 mg of naltrexone. I have my local pharmacist compound it special, because the normal dose (for another malady) is 50 mg, way too much to achieve the desired result. Thank you Max.
• Flaxseed oil, 1000 mg taken with each dose of curcumin to enhance bioavailability. Thank me.
• Resveratrol 125 mg four times daily, taken with the curcumin. Thank you Margaret.
• Quercetin 500 mg twice daily, taken with the curcumin. Thank you Margaret.
• Mostly-vegetarian diet. Lots of fruits and vegetables, lots of nuts, modest amounts of grain, a little chicken or turkey, fish about twice a week, bison rarely, no beef or pork ever. Margaret posted about C-reactive Protein here. It may be a logical target for myeloma treatment, and one way to reduce CRP is to go vegetarian. Thank you Margaret and Sunshine.
• Gluten-free diet. Gluten can cause severe inflammation in people who test gluten-intolerant, and it can cause some inflammation in many people who do not. Intolerance to gluten runs in families, and I have a son who tests gluten-intolerant, so why not go gluten-free, or nearly so? We pretty much have done that in the last five weeks and will do so in the foreseeable future. Thanks, Sunshine.
• Lots and lots of exercise, including the overheated Chicago Marathon. Thanks to Sunshine and Sweet Pea.

The doctor/oncologist, who was SO skeptical about LDN that he would only humor me with a five-week prescription, today said "see you in two months," and gave me a three-month prescription and a happy smile. He used the word "stable."

There is some bad news, though. Or maybe it's just not-too-hot news. My red-blood-count is 4.24 M/uL, the lowest it has been in my four years of myeloma, and hemoglobin (HGB) is 13.9 g/dL, also at its lowest. RBC is actually off the bottom of the low range, though HGB is still barely within. My red blood count is always a bit low, but this is still a significant change. What caused it?

• Perhaps the lack of red meat in my current diet?
• I ran 14 miles indoors (read: warm!) the day before the blood draw. Could that kill off a few red blood cells?

Anyhow my doc onc isn't too worried and recommended more bison in the diet. He did point out that all of the things I'm doing are a "treatment," and treatments have effects on the whole body. Perhaps it's time to check in with my internist too; he's awfully smart.



Yesterday's breakfast: Organic oatmeal, organic nonfat milk, kiwi, blackberries, banana, sweetened hibiscus blossoms (from Trader Joe's).


Today's salad: Organic romaine, avocado, jicama, organic strawberries, macadamia nuts, blue cheese, raspberry vinegar.


Main dish (organic beans, organic rice, organic corn, onions), more onions, cute little sweet potatoes, organic nectarine, organic catsup.

Score One for Low Dose Naltrexone

My friend Max put me onto low-dose naltrexone (LDN) some time ago. I blogged about it in June. It is a prescription drug approved for treatment of drug addiction, but used by a few doctors for cancer and other maladies, off-label and in small doses. It is thought to work by stimulating the body's endorphins back to normal levels, thereby restoring the body's immune system.


Long story short: Max called today to report his own results: IgM was over 3000 (normal is 300) and has DROPPED 18% in four and a half months on LDN. Max is not an excitable person, but he certainly did sound pleased with this result.

To be sure, an 18% reduction in IgM could be just a normal variation, or almost so, a combination of variability in the test and actual variability in his blood. Though his doctor seemed underwhelmed, Max thinks this was an actual drop, because his numbers had been steadily climbing by about that amount at every test interval. The future will reveal the truth, of course.

Max does NOT have myeloma; he has Waldenstrom's Macroglobulinemia (what a mouthful). Whereas myeloma patients normally talk about IgG or IgA, his naughty protein is IgM; it affects the body somewhat differently and is treated somewhat differently. If he had myeloma instead, who knows whether he would have experienced this benefit from LDN?

Hoping that it can, I am taking LDN too, for the past eleven days, along with curcumin, quercetin, resveratrol, mostly-vegetarian diet and the kitchen sink.

Smoldering Myeloma

Donna left a nice, informative comment on an earlier post here titled More Thoughts About Marching. This is my response, long enough for a post rather than just a comment.

We're the lucky ones, Donna, in my opinion. We found out about our myeloma by accident, long before we broke a bone, or suffered kidney damage, or whatever. We have the chance to pack a little more life into the next years than we might have done otherwise. Furthermore, we have the chance to learn about the treatment possibilities and about our own disease before having to make the serious life-changing decisions.

I'm in the position of making one of those decisions soon, because my particular oncologist is asking me to make it. Mayo and UAMC are right - studies have not shown any survival advantage in starting treatment early, so why suffer the symptoms of the treatments when there are none from the disease? Perhaps the answer is that early treatment may provide a higher quality of life even if it does not extend life; that is the proposition. At my last doctor visit I said to him that Mayo would wait until there are C.R.A.B symptoms, such as broken bones, kidney impairment, or anemia. He responded "I want to keep you from having those symptoms."

That sounds great, and I love that attitude in my oncologist! But the problem is that the treatments all have side effects, some of them permanent. I discovered this when I was treated with thalidomide; I won't bore you with the list! So it's a balancing of risks: (1) Risk of permanent injury from the myeloma, versus (2) Risk of injury from the treatments. I've been resisting hard-core treatments now for almost half a year, opting for alternative treatments instead, with uncertain results.

Here's my engineer's understanding of myeloma: Plasma cells normally produce immunoglobulins (Ig) which fight infections. The plasma cells remain in the bone marrow, and the immunoglobulins escape into the blood stream where they do their work. Malignant cells normally still produce immunoglobulins, but they are ineffective and often lack one of the "arms" that normal immunoglobulins have. They are distinguished by the type of immunoglobulin (there are several types, including IgI, IgA, & IgM). They are further distinguished by the remaining arm (or is it the missing arm?), which may be either kappa or lambda. Hence your myeloma, and mine, is IgG Lambda. In some people, the malignant cells do not produce any immunoglobulins at all, or very few; that form of myeloma is called non-secretory (nothing is secreted). And I think this is a continuum; some people may secrete only a little and others a LOT.

Sorry for the long blah blah, but I wonder if you are a non-secretor, or nearly. If so, it's not necessarily a bad thing except that it makes the myeloma harder to track. I'm surprised to see that ALL of your Ig numbers are below the normal low limits; I don't know what to think of that, except to guess that the malignant cells are suppressing the production of the normal cells which do produce immunoglobulins.

IgG by immunofixation detects both normal IgG and abnormal (monoclonal) IgG equally, as I understand it. There is another test called serum protein electrophoresis (SPEP) which can show just the abnormal IgG. I wonder what your SPEP shows. Perhaps NONE, if that is the meaning of the April notation.

I do not have Bence-Jones proteins in the urine. More commonly now, I believe, these are called "free light chains." My doctor tests for these proteins in the urine, and in the blood as well, using a test called FreeLite (nephelometry). So far I have not had more than a trace of light chains in the urine, but they are detectable and above normal in the blood. Light chains are often used to track the myeloma in people who are non-secretors, so your oncologist may be doing those tests for that reason; I assume that you are asked to submit a 24-hour urine at every test interval. I would encourage you to ask your doctor for copies of every single lab test or radiologist's report; I do that and I've never been sorry.

There are other ways for us (anyone) to communicate more directly. One of the best is the MMA List server, where myelomiacs or caregivers register as members and then receive emails sent to the list by other members. I've enjoyed this a lot lately. If you post a message to the list, people can respond through the list or directly to you. In any case, if you (or anyone) would like to email me directly, my address is minnesotadon at gmail dot com. Thanks, Donna, may your myeloma smolder forever!



Today's breakfast: Organic oatmeal, organic nonfat milk, blueberries, organic seedless grapes, banana. Estimated Weight Watcher points = 5.


Lunch today: Sunshine bread (Arrowhead Mills gluten-free baking mix, organic corn flour, organic amaranth, organic teff flour, nuts, other goodies), organic squash, onions, organic salsa, organic chunky peanut butter. Estimated Weight Watcher points = 7.

Life Extension Super Bio-Curcumin

Life Extension (LEF) recently introduced a new curcumin product called Super Bio-Curcumin, which they claim has "enhanced bioavailability and sustained retention time in the body confirmed by human clinical studies." If true, their 400 mg capsule is "equivalent to 2772 mg of a typical 95% curcumin extract," or almost seven times more potent. However, I found no information supporting their claims, so I filled out a form on their website requesting additional information on the studies that demonstrated this improvement in potency.

Meantime, believing that LEF is a legitimate organization which probably has some basis for its claims, I did order some of the new curcumin and I am already adding it to my protocol, intending to gradually replace four of the sixteen 500-mg capsules that I now take with four of the 400-mg Super Bio-Curcumin capsules. I am not doing this increase all at once because curcumin is very bioactive and can have side effects, but if I am able to get to four of the new capsules in addition to twelve regular ones, that should be the equivalent of about 17 grams of "typical" curcumin extract per day, more than double what I am taking now.

Today I received a written response to my request for information, as follows:

Don,
Thank you for contacting Life Extension. The studies are found in the October 2007 issue of Life Extension magazine. However, this issue is not yet loaded onto our website. You should be receiving your October issue any day now. If for some reason it does not arrive, please e-mail us and we will send you another copy.

Dave Tuttle
Dept. of Correspondence
Life Extension Scientific Information, Inc.


The email also included a long disclaimer, which I can summarize as "We are not your doctor, see your own doctor."

We just re-subscribed to Life Extension Magazine at this house, and have not yet received the October issue. Since we allowed our subscription to be interrupted, we may not get one at all, but I will look for this information on the LEF website. If you, dear reader, receive your copy of the magazine and care to leave a comment about Super Bio-Curcumin, please do so.



Today's breakfast, after the bike ride: Organic oatmeal, organic nonfat milk, banana, kiwi, organic grapes, organic nectarine, blueberries. Estimated Weight Watcher points = 6.


Today's dinner salad: Organic romaine, organic plum, kiwi, avocado, organic salad beans (mostly under the lettuce), raspberry vinegar. Estimated Weight Watcher points = 4.


Today's dinner: Alaskan wild catch halibut steak, organic sweet pickle relish, organic winter squash, organic salsa. Estimated Weight Watcher points = 5.

The Program

Margaret recently posted about c-reactive protein (CRP). It's made by the liver, sometimes in response to myeloma, and then it apparently also supports the growth of myeloma. It's a very naughty circle, but it makes CRP a potential target for myeloma therapy.

When I did a little research on ways to reduce CRP, vegetarian eating showed up right away as a good candidate. So, bless her heart, my Sunshine has enthusiastically agreed to do mostly-vegetarian meals for the next five weeks or so. "Mostly-vegetarian" is still a work in progress, but probably means no red meat, not more than one meal of chicken or fish per week, and very easy on the cheese. The food pictures below show a couple of examples. Note that this is not necessarily low fat, because the diet does include nuts, avocados, and other healthy vegetarian foods.

The Program for the next five weeks, each day:

• Eight grams of curcumin, half with bioperine;
• Four grams of flax seed oil;
• One gram of quercetin;
• 500 mg of resveratrol;
• 4.5 grams of naltrexone, last thing in the evening;
• Mostly-vegetarian nutrition;
• Lots and lots of exercise;
• Plenty of Sunshine.

When the LEF curcumin arrives, a new and supposedly much more bioactive form, I will use it to replace enough of the normal curcumin to get a dosage equivalent to at least 12 grams of the normal curcumin.

Bone survey was yesterday, bone density test tomorrow, results whenever.


Four times per day, left to right: One capsule of organic flaxseed oil; two capsules of Doctor's Best or NSI curcumin (rotate); two capsules of Ageless Cures curcumin (total curcumin 2 grams); one capsule of resveratrol (125 mg each, plus other stuff); one capsule of quercetin (500 mg) every other dose.


Organic romaine, avocado, organic nectarine, blue cheese, pistachios, raspberry vinegar. Estimated Weigt Watcher points = 4.


Organic corn meal, organic corn flour, can of organic corn, with a sprinkle of caraway seeds on one small piece (a successful experiment). With a drizzle of maple syrup. Estimated Weight Watcher points = 6.

More Thoughts About Marching

Margaret and Ana, Thank you both for your comments on the previous post. My heros, two kind and clever women in Italy! I do feel better.

The decline of 3% in M-spike is probably well within the margin of repeatability of that test, but at least it suggests that monoclonal proteins did not go UP. I do not know of any reason why the normal IgG should have gone up - I was not dealing with any kind of infection that I know of on blood-draw day - but of course it could be due to a transient subclinical infection of some kind. Perhaps the myeloma is not marching; we shall see in five weeks or beyond.

Meantime I will:

• Continue with the curcumin,
• Add low-dose naltrexone,
• Add resveratrol and perhaps more,
• Get the bone survey (I had a skull MRI done in April),
• Look into the new Life Extension Curcumin and perhaps use that for part of my daily dose,
• Examine the Mayo mSMART concensus protocol more carefully (I believe that this will indicate that I should not treat conventionally until CRAB symptoms appear), and
• Think long and hard about treatment philosophy when and if conventional treatment really is necessary.

That last item includes the decision whether to treat it with the minimum required to keep it under control, or clobber it (thereby also clobbering my body) in the hope of getting a remission which will allow some months or years treatment-free.

In answer to other very good questions:

• The doctor said that some calcium is bound in the IgG, so the calcium measurement in the normal Chem-20 panel would naturally rise with the IgG and might not be a separate indicator. In five weeks he will order another test for what I believe he called "free calcium," which will be more definitive.
• I did not ask about vitamin D but I do take 1000 IU daily, or is it 2000?
• I have had a thyroid test (T4 and another) which were normal. However, my primary physician thinks I neverhteless have the beginning of a goiter (!), so that is a concern and I have started taking a thyroid supplement which includes bovine tissue.
• I will ask my doctor about another cranial or spinal MRI.
• My onc just didn't order the B2M test, for some reason. Since it was also trending up I think he should have, and he said that will be included in five weeks, along with the extra calcium test.
• I've had three BMB's so far, with the most-recent showing only 6.8% plasma cells. However, all three biopsies are from the same hip; next time I will switch hips!
• I'll check into PET as well.

Thank you both for your thoughtful comments. I encourage you to keep on saving my life :-)