So What's All the Fuss?

I'm sure that I will find out! But so far, the first morning after the first dose of CC-4047 2 mg and dexamethasone (dex) 40 mg, I feel quite normal. I was a little restless toward morning, but that's not unusual, and not surprising in these circumstances. I got back to sleep and awoke refreshed. Are my thighs a little tired feeling, or am I imagining that? Time will tell.

This is Saturday morning, so normally I would be running with the St Croix Valley Runners right about now, but it's six degrees BELOW zero and I have wimped out! I'll run on the indoor track at "the club" later today, with my sweeties. That will be an interesting test.

Yesterday's visit to Mayo was uneventful, really. No more holes poked in me. We did a lot of talking and I picked up the CC-4047 and dex. A few things got resolved:

• Logistics: I will get weekly blood tests (CBC) at the Stillwater clinic, faxed immediately to Mayo, to be sure that my blood counts remain within a normal range.
• For a few months I will return to Mayo every month; I already have an appointment for April. If things go well, I will later have some of my monthly appointments with Dr Petryk at MOHPA, to save the drive down.
• Dr Lacy does NOT think that the lambda light chains are a sinister part of my myeloma, so she has not ordered 24-hour urine collections. That's a minor inconvenience (major for women) that I will not face every month.
• WITH the CC-4047 and dex I also take:
  • 325 mg aspirin daily, half at night and half in the morning, to ward off deep-vein thrombosis (DVT) from the CC-4047,
  • Ranitidine (generic Zantac) tablets 75 mg, one in the evening with the dex, and one the morning after, to reduce stomach acidity and hopefully ward off ulcer,
  • 400 mg acyclovir to ward off shingles, because I'm messing with my immune system.
• Dr Lacy gave me a 2006 Mayo Clinic study of the clinical effects of green tea (especially EGCG) on patients with early-stage chronic lymphocytic leukemia (CLL). The results were quite positive, and even though myeloma is different from CLL I will continue with the EGCG.
• I will continue with the curcumin as well, but haven't decided about other supplements. Need to make an appointment with my naturopath.
• My electrocardiogram shows "marked sinus bradycardia" (slow heart rate). That means I'm a runner!
• The bone survey shows "generalized spotty osteopenia" (between normal and osteoporosis) but no lesions from the myeloma. We know, though, that x-ray doesn't always show lesions before the bone breaks.
• After seeing that, looking at my previous bone density results, and knowing that I would be taking dex, Dr Lacy decided to prescribe pamidronate (Aredia) in a modest amount. But as we discussed this, she guessed that she didn't really care what bisphosphonate we use, and thought that Boniva or Fosamax would do as well. Those simple pills are much more convenient than 90-minute Adedia infusions at a hospital. I got away without the prescription actually in hand, but will eventually probably be taking a generic version of Fosamax weekly to maintain bone density.
• She volunteered that the running certainly helps as well.
• I intend to have a visit with a physical trainer to learn some good exercises for strengthening my back muscles, because (as the naturopath HH points out) bones will strengthen wherever the attached muscles are worked and strengthened.

I feel good about being personally proactive. If I had not made the desision to go to Mayo, I would not have had the PET scan and would not have learned about the lesions in my shoulder blades and spine. Further, I would not be in the CC-4047 trial.

The CC-4047 is 2 milligrams. How can two little milligrams of anything be so potent? Better living through chemistry (I hope).

Live well and long.

Myeloma Treatment Regimen

I saw the naturopath more than two weeks ago. Now I'm feeling a little guilty that I haven't already implemented all of her recommendations, because my Mayo visit is only about four weeks away, not a lot of time to see results from the enhanced regimen.

Nevertheless I can't start any sooner than today, so here goes the new supplement regimen:

	Daily
Supplement	Quantity
Coenzyme Q-10	200 mg
Curcumin, NSI	4640 mg
Curcumin, Dr Best	4000 mg
EGCG	1750 mg
Feverfew	1600 mg
Flaxseed Oil	1000 mg
Genistein	70 mg
Quercetin	4000 mg
Reishi Mushroom	3000 mg
Resveratrol	400 mg
Selenium	200 mcg
Vitamin D	5000 iu
Vitamin K	8.1 mg

This is divided into a morning dose and an evening dose, in both cases at least a half hour before a meal. For more details including brand names, sources, and supplements intended to treat other health conditions, visit this page.

In addition to the supplements, other lifestyle choices may help hold off the cancer:

• Low-dose naltrexone.
• Diet intended to minimize inflammation:
  • No beef or pork,
  • Free-range bison only once every week or two,
  • Fish (especially wild-caught salmon) or chicken every other day or so,
  • Lots and lots of different and colorful vegetables and fruits, in season when possible,
  • Lots of nuts, especially tree nuts of all kinds,
  • Gluten-free,
  • Treats, when required, are nuts, fruits, and a little bit of dark chocolate,
  • No exceptions!
  • If you've seen my food pictures, you won't feel sorry for me.
• Exercise galore, especially aerobic but also resistance,
• One gluten-free beer every evening,
• Plenty of lovin'. :-)

For what it's worth, that's the regimen. I'll let you know in a month or so how it's going.



Recent salad: Organic salad greens, cucumber, Danish blue cheese, avocado, organic medjool dates, jicama, roasted pistachios, raspberry vinegar and a dash of olive oil, organic apple, naval orange.

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.