Friday, January 18, 2008

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.

Friday, January 4, 2008


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! :-)

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

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

Yesterday's dinner
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.