CC-4047 Cycle Eleven

Mayo Clinic Visit, January 8, 2009:

After eleven cycles of the trial drug CC-4047 and dexamethasone (DEX) my tumor burden may be starting to go up again. Last month's M-Spike was 1.0 g/dL and this month's is 1.1. The test-result printout, however, says "no significant change." And I suppose that's right. It's possible to read too much into one set of blood tests, and the accuracy of this test may not be much better than 10% anyway.

But previous tests and the results of other markers do suggest that the myeloma is coming back, if slowly. I hope not, but it seems most likely. In particular, IgG increased from 1260 to 1350, the third modest increase in the last three cycles. In contrast, though, Lambda Light Chains went down from 4.03 to 3.31 mg/dL, which might mean something, might not. They were up 24% last month, and this month they dropped back to about where they were.

Other numbers like calcium, creatinine, and albumin are fine, as is WBC the white blood cell count. AST and ALT, both a bit high last month, are back down into the reference range. Even RBC, the red blood cell count, has inched up into the reference range. So neither the myeloma nor the treatments are injuring any soft-tissue organs yet. I like that.

Here are some related links:

	My Myeloma		A discussion of my myeloma, not very technical.
	My Treatment History		Not technical.
	My Test Charts		Graphic displays of several key test results over time.
	My Test Result Table		Best with a wide browser window. Very "technical."

Side effects of the two key drugs, CC-4047 and dexamethasone, are discussed in a previous post.

Here are a few specific test results:

Test		Oct 16		Nov 13		Dec 11		Jan 08		Remarks
M-spike g/dL		0.9		1.0		1.0		1.1		Best tumor measure
IgG mg/dL		1130		1170		1260		1350		Variation is normal
L FLC mg/dL		3.14		3.25		4.03		3.31		Free light chains
Calcium mg/dL		9.6		9.8		10.1		9.9		Below 10.2 is best
Creat mg/dL		1.1		0.9		1.0		1.1		Kidney, lower is better
HGB g/dL		13.8		14.6		14.6		15.3		Hemoglobin, normal
RBC M/uL		3.97		4.19		4.20		4.36		Red cell count, normal
WBC K/uL		4.4		4.3		5.3		4.6		White cells, normal

Supplements: For quite a long time now I've been taking a rather large number of different herbal supplements, many of them specifically intended to help treat the myeloma. Over the past three months, though, I've done an experiment. For one month I just skipped the supplements, and then for the next two I took them fairly religiously. I can't be perfect - it just isn't in me - but I did as well as I could. Results: (1) The tumor burden may have gone up marginally when I took NO supplements, and (2) It may also have gone up marginally in the two months that I DID take the supplements. In other words, I have no evidence that the supplements made any difference at all. None.

I can't prove that they DIDN'T help just a little bit, either, but that's not enough. Taking a fistfull of capsules twice a day is not a treat for me. In fact it's a huge pain in the butt. I hate taking them, and they cost a lot of money. So the supplements require a serious re-thinking. I will make an appointment with our naturopath and go through them, one by one, and come up with a shorter list. Much shorter, I hope. Maybe I can get it down to a fistfull ONCE a day. There are a few supplements that are quite safe on the list, such as saw palmetto for BPH (it's a guy thing), or Vitamins D3 and K2 for strengthening bones. Those are keepers. But curcumin, EGCG, quercetin, AHCC, and resveratrol are all up for grabs. On the other hand, Margaret has been posting good information about genistein lately, and our naturopath did recommend that a few months back, so perhaps it's worth a try.

Doctor: This time I met with the nurse-practitioner Dr KDS. Here is some of the discussion:

• I'm supposed to take a stomach-acid reducer with the weekly dexamethasone (DEX) to help ward off DEX-induced ulcer. I've experienced a slight stomach discomfort on ranitidine, so for one week I tried Prilosec, the other recommended option. Later I felt a sharp pain in the gut for a half day or so, possibly at a bend in the colon. I told Dr KDS that I had taken Prilosec but not for the recommended four days in advance, and she said that four days was not necessary. No explanation for the sharp pain, but back to ranitidine.
• I asked if there was any information or simple test that could tell us whether the lesions in my bones are getting larger or smaller. X-Ray bone surveys are very inaccurate, and the PET scan is not done often because of its cost. Sigh. We myelomiacs often don't know what the myeloma is doing to us until we break a bone. Seems like there should be a better way.
• I asked if the DEX and CC-4047 were making my body age rapidly, especially my skin. She thought probably so.
• I noted that skin is continuously renewing itself, sloughing off the top and rebuilding from underneath. If that rebuilding requires angiogenesis, the creation of miniscule blood vessels, then that rebuilding may be inhibited by CC-4047 and DEX, both of which are anti-angiogenic. She agreed that might be possible, even likely.
• I asked if there were any other organs which deteriorated under the CC-4047/DEX treatment. She suggested possibly the interior of the intestines, which are also lined with tissue that constantly sloughs off and renews itself from underneath. She thought NOT the more-critical organs like the heart, liver, and kidneys, which renew themselves in a different way.
• I asked about the herpes zoster (shingles) vaccine for myelomiacs like myself who have already had chicken pox. Dr KDS said it was risky for immune-compromised people because it is a live virus, and in addition the efficacy is not very high. In other words it's not worth the risk. Insurance doesn't cover it either.
• DEX is known to inhibit "glucose transport," the transfer of sugar from the blood into the muscles which need the sugar for fuel. I told her about a recent unintentional "experiment."   I ran seven miles on DEX day, when the DEX was at maximum effect, and finished totally exhausted even though my pace for that run was slow. The very next day I ran a similar distance at a faster pace, finishing with energy to spare. Neither of us was very surprised.
• I measured my blood glucose on DEX day again, this time with the 8 mg dosage. The chart below shows glucose measurements at 40, 20, 12, and 8 mg of DEX, always taken the evening before.

I'll go down to Mayo again in another month or so. Meantime I'm still running 20-30 miles per week, hoping to increase that gradually back up to 40. Life is good.

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.

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.

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.