March 4, 2010, end of Cycle 26:

Two years ago this week, I started on a trial of the new drug pomalidomide (then called CC-4047) with dexamethasone (DEX). Within a few months my M-spike was down from 2.7 to 1.0 g/dL, where it has remained since, going as low as 0.8 and as high as 1.1. Pomalidomide is good stuff. It seems to produce a response in most myelomiacs, including many for whom other treatments have failed to work. I do hope that Celgene and the FDA can get together quickly and get it approved.

I am currently taking only two prescribed drugs: (1) Pomalidomide, 2 mg per day; and (2) Aspirin, 325 mg per day. I would also take acyclovir to ward off shingles, but acyclovir is hard to get right now.

M-spike was unchanged at 1.0 g/dL at the end of this 28-day cycle. IgG was down 4% at 1130 mg/dL, which is probably good - IgI varies. Lambda free light chains (FLCs) are down a surprising 24%, yet Kappa FLCs are up, suggesting that the Lambda decrease is genuine. I'm not sure what the decrease in Lambda means, but it can't be bad. Total white cell count was 3.4 K/uL, down slightly to the lowest value I've ever had, just below the bottom of the reference range. But the white count bounces around, and neutrophils even went up a little, so we'll just watch it.

At worst, the tumor burden appears stable, despite discontinuing DEX three cycles ago, and at best it may have decreased just a little. Furthermore, neutrophils have stopped their downward slide. I'm a happy camper.

Dr L also ordered a bone-density (DEXA) scan this time. The result for the lumbar spine, vertabrae L1-L4, is a decrease in absolute density of 2% compared with another scan 2 1/2 years ago at a different facility. I'd rather it was an increase, but there could be that much variation between machines, and I'll take it. Results for the femur are less clear to me, because the previous facility reported only one value for femur, and Mayo reported two, called "femur neck" and "total hip." If the "femur neck" value is comparable to the femur value from the previous report, then density actually went up by about 5%. This is possible, because Vitamins D3 and K2 are known to strengthen bones, and I take them very regularly. In any case I still have osteopenia, but not osteoporosis, and I hope to discuss this more with Dr L.

Differences this cycle:

• Dr L ordered 3 days of Biaxin at the beginning of the cycle. More about that below.
• My 30-year chronic headache has started to return, now that I'm off DEX, and I took a capsule of naproxen sodium whenever the headache reminded me, once every day or two. Two years ago, not long after the trial started, the decline in M-spike gradually leveled off in the same months that I gradually stopped using naproxen. Was there a cause and effect? Since Celebrex (celecoxib), a similar NSAID, is thought to have a modest anti-myeloma benefit, it is possible that naproxen might also. In my amateurish and hopeful opinion, it is even possible that pomalidomide and naproxen might be synergistic. If so, we'll take advantage of it.
• I started taking a new supplement, sodium copper chlorophyllin, one week before the blood draw. A recent article in Life Extension Magazine suggests that chlorophyllin may support neutrophil counts during chemotherapy. My neutrophil count did stop falling this time, actually going up slightly from 1.22 to 1.29 K/uL. Neutrophils bounce around a lot however, in response to bacterial threats in the body, so this is not very significant.
• We ran another marathon eleven days ago. I've never noticed that a marathon affects the myeloma results, though.

Discussions with Dr L:

• Biaxin (clarithromycin) is known to potentiate the combination of DEX and an IMID drug, such as Revlimid or thalidomide, and probably pomalidomide. Biaxin is no help by itself, and no one knows whether it would work with ONLY the IMID drug, without the DEX. Dr L prescribed a three-day course of Biaxin a month ago, to prevent a minor skin injury from becoming a major infection. Could those three days of Biaxin have helped the pomalidomide work on my tumor burden, even though I'm not taking DEX, and even though only three days?
• She looked at the skin injury, now just a red spot, and thought it was healing rather slowly. In contrast, I thought it was healing fairly quickly compared with similar, prior experiences on DEX.
• I asked if neutrophils are important to warding off shingles, since my neutrophils are slightly below the bottom of the reference range. She said no, that neutrophils attack bacterial infections, and lymphocytes are more important for shingles and other viruses. Happily, my lymphocytes are smack in the middle of the reference range.
• Somehow the subject of Velcade came up, and she expressed the opinion that Velcade might not be in my short-term future, even if pomalidomide begins to fail, because the twice-weekly infusions and the attendant neuropathy would mess up my very-active lifestyle. I didn't mention that I would prefer once-weekly infusions, and by the way whose lifestyle is NOT messed up by Velcade infusions? I was happy with her patient-centered concern though. Anyway the discussion of the NEXT treatment after pomalidomide seems farther off now that it did a cycle ago.
• I don't recall how this came up, but at one point Dr L said that in a given instance there may be a choice between any of several treatments, all of them good, none of them wrong. Anyway that's what I thought I heard - there may not be a BEST choice.
• I had a bone-density (DEXA) scan this time. When the results of the scan were unknown, I mentioned to Dr L that if a bisphosphonate is indicated, I have a very strong preference for oral rather than IV. To my surprise she agreed wholeheartedly, saying that new information is coming out indicating that myeloma doctors may be over-treating with the IV meds (Aredia and Zometa). The half-life of those bisphosphonates in the bones is 10 years (or did she say 20 years). Too much bisphosphonate may stop the bones from losing density, but the bones may not regenerate themselves. Instead they become brittle and subject to fracture, especially the femur near the hip. Mayo will be coming out with a modification of their mSMART protocols, which may include oral bisphosphonates. At least three different oral bisphosphonates are available, and she wasn't yet sure which she might prefer for me. I think I'd also consult with my primary care physician, my other Dr L, who has a lot of experience with oral bisphosphonates.

What's Next:

I've been taking curcumin 8 g/day, sixteen capsules, and I'm tired of doing that. I might even say I hate it. Curcumin could be helping, but I have little evidence, so I'll stop it and see what happens. Quercetin too. I'll go back to one 500 mg capsule of curcumin per day, and no quercetin, reducing my daily consumption by 23 capsules. Yay!

The chlorophyllin supplement is new, and I will continue that, to support the neutrophils and because it is a good anti-mutagenic agent. I will also take one naproxen capsule per day. I use the liquid type, in the hope that it will be less likely to burn a hole in my innards as some NSAIDs can do.

Some current test results:

Test		Dec 10		Jan 07		Feb 04		Mar 04		Remarks
M-spike g/dL		0.9		1.0		1.0		1.0		Best tumor measure
IgG mg/dL		1090		1110		1180		1130		Variation is normal
L FLC mg/dL		2.36		2.18		2.78		2.10		L Free light chains
Calcium mg/dL		10.0		9.6		9.8		10.1		Below 10.2 is best
Creat mg/dL		1.1		1.1		1.1		1.0		Kidney, normal
HGB g/dL		14.3		14.4		14.2		14.7		Hemoglobin, normal
RBC M/uL		4.00		4.05		4.00		4.17		Red cell count, low
WBC K/uL		3.7		3.5		3.8		3.4		White cells, low
ANC K/uL		1.55		1.38		1.22		1.29		Neutrophils, low

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. Somewhat technical.
My Supplements		With links to where I buy them.

Leftover organic chicken or turkey, baked organic sweet potato slices, organic broccoli, jalapena tomato sauce.

When The Receptionist Knows Your Name

January 7, 2010, end of Cycle 24:

You know you're battling cancer when the receptionist at the Mayo Clinic Hematology desk knows your name as you walk in. Happened Thursday.

24 cycles of the pomalidomide (CC-4047, Actimid) study are complete, and it's been a great ride. Not over yet, but Thursday was a hint that it might be over before long. Or was it a hint? The worst news, really, was that M-spike went from 0.9 to 1.0 g/dL. I stopped dexamethasone (DEX) completely for this cycle, the first cycle without it, and M-spike inched up. Maybe. Although M-spike tracks the tumor burden most closely, it is not especially accurate, and IgG only went up a little, from 1090 to 1100 mg/dL, so maybe it didn't really change. IgG is a measure of ALL immunoglobulins, including the monoclonal ones that make up M-spike, so if M-spike goes up by 0.1 g/dL, then IgG has to go up by 100 mg/dL, all else being equal. So I don't know whether to cry in my beer or not. I guess I'll just drink it.

I did try to stave off an increase, with curcumin 8 grams per day and quercetin 4 grams per day during this cycle. Did they help? No way to know, but if they did, they didn't help enough to send M-spike southward. I've also taken ashwagandha for three cycles now, one capsule per day, and I think I'll probably stop that because it made no noticeable improvement for any of the three cycles. I'll keep taking the curcumin and quercetin for another cycle, on the theory that M-spike might have been worse without them.

The other bad news is that my neutrophil count has dropped to 1.38 K/uL, its lowest level ever and well below the bottom of the reference range, which is 1.70 K/uL. Further, my white cell count (which includes neutrophils) confirms this, dropping by just about the same amount. This is one of several possible pomalidomide side effects. I had thought I was immune to this problem, but now that I look closely, both of these numbers have edged downward during the 24 cycles. They bounce around a lot, because neutrophils and other white cells respond to microbial threats in the body, but the trend line tilts slightly downward, as indicated by the blue dots in this chart.

It's possible that those white counts are down partly because my body just hasn't encountered any threats lately. Somehow, I successfully navigated all of the Christmas and New Year's parties, plus a grandson visit, without catching anything. Whatever the reason, however, without sufficient neutrophils a person could develop a life-threatening neutropenic fever, so the pomalidomide study requires a neutrophil count of at least 1.00 K/uL. To keep the count high enough the regimen can be changed, from pomalidomide every day to three weeks on and one week off. If that isn't enough, there may be another way to reduce the dosage, perhaps taking the 2-mg capsules every other day, though we didn't discuss that. Getting ahead of myself here.

Running seems to be going a bit better without the DEX. Dr KDS says that it may take a couple of months for the DEX effects to wear off entirely. I do notice that a small open skin scrape on one ankle has healed over since stopping the DEX, and other little skin injuries heal faster too. I imagine that the microscopic muscle, tendon, and bone injuries that a runner gets all of the time will also heal more quickly. If so, they won't develop into painful injuries that would require me to stop or slow the training. We'll see. Several more marathons ahead this year, if all goes well.

Some current test results:

Test		Oct 15		Nov 12		Dec 10		Jan 07		Remarks
M-spike g/dL		0.9		0.9		0.9		1.0		Best tumor measure
IgG mg/dL		1020		1100		1090		1110		Variation is normal
L FLC mg/dL		2.68		2.61		2.36		2.18		L Free light chains
Calcium mg/dL		10.3		9.8		10.0		9.6		Below 10.2 is best
Creat mg/dL		1.0		1.0		1.1		1.1		Kidney, normal
HGB g/dL		15.0		14.4		14.3		14.4		Hemoglobin, normal
RBC M/uL		4.21		4.00		4.00		4.05		Red cell count, low
WBC K/uL		4.2		3.9		3.7		3.5		White cells, low
ANC K/uL		1.78		1.53		1.55		1.38		Neutrophils, low

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."

Sunshine made this. I ate it for dinner. Yum.

No More DEX!

YAY! After 23 cycles of pomalidomide (CC-4047, Actimid) with dexamethasone (DEX), I've taken my last DEX tablet, at least for a while. Recently I've only been taking 4 mg per week anyway, which probably doesn't do a lot of good but certainly seems to induce most of the same side effects as a larger dose.

Thursday's results (December 10) again show the myeloma to be stable. M-Spike, IgG, and light chains all about the same as 28 days ago. Stable is good - my myeloma and I are at a standoff. Let's hope that continues without the DEX. More actual test results are listed below and from the righthand panel.

Ashwagandha:

No noticeable improvement, so clearly the ashwagandha isn't helping much. Of course it's possible that the myeloma has begun to figure out the pomalidomide, so M-spike would be higher without the ashwagandha, but I doubt it.

DEX Replacement:

First of all, maybe the DEX doesn't need to be replaced. But I'll see if I can find something that will help the pomalidomide, so that I don't have to go back on DEX. In my own earlier efforts to find a treatment, I had thought that nothing did much good, because M-spike never seemed to go down or even stop climbing. Looking back, though, I can see that IgG did stop climbing for a while, even if M-spike didn't seem to, when I was on my "kitchen sink" regimen, taking low-dose naltrexone (LDN) with curcumin, quercetin, resveratrol, and EGCG. The truth is that M-spike can't actually climb much when IgG is stable, so M-spike was probably more stable than I thought back then. Now, what would happen if I replaced the DEX with the kitchen sink stuff?

Oh, that's right, LDN is a prescription, so I'd need to discuss that with Dr L and I doubt it would be permitted as part of the study. I need a substitute. LDN is thought to work by causing the body to release endorphins which help somehow, possibly just by inducing a very sound sleep. Well, ashwagandha does that too, at least it seems to put me to sleep. So I guess I'll keep taking the ashwagandha at bedtime. Here's the new regimen, to be merged in with the other supplements that I take:

	Ashwagandha		225		mg
	Curcumin		8000		mg
	Quercetin		4000		mg

If those don't seem to make a difference after a cycle or two, I may try resveratrol and EGCG next. We'll see. Meantime I have to order more of the supplements. The full updated supplement regimen will be available from a link in the right-hand panel soon.

Wild Alaskan Salmon Oil:

We recently spotted this product on the shelves at Costco in Maplewood, MN: Wild Alaskan Salmon Oil. It is made by a company calling itself Alaska Protein Recovery, LLC, and purports to be (1) Free of mercury and other heavy metal pollutants (because Alaskan waters are low in pollution), (2) from a certified sustainable wild-salmon fishery, and (3) "proud to be made in the USA" (i.e. not from China). Two 1000-mg capsules supply 600 mg of omega fatty acids, including DHA 220 mg and EPA 180 mg. I must admit that I don't know if that is good or not - I haven't studied fish oils. The flax oil that I already take shows different fatty acids on its label, so comparison is difficult. I have been taking two flax oil capsules per day, and will now add two salmon oil capsules. Perhaps by the time I've used up the 180 salmon oil capsules I'll know whether this was a good idea or not.

Some current test results:

Test		Sep 17		Oct 15		Nov 12		Dec 10		Remarks
M-spike g/dL		0.9		0.9		0.9		0.9		Best tumor measure
IgG mg/dL		1070		1020		1100		1090		Variation is normal
L FLC mg/dL		2.54		2.68		2.61		2.36		L Free light chains
Calcium mg/dL		9.9		10.3		9.8		10.0		Below 10.2 is best
Creat mg/dL		1.1		1.0		1.0		1.1		Kidney, lower is better
HGB g/dL		14.7		15.0		14.4		14.3		Hemoglobin, normal
RBC M/uL		4.08		4.21		4.00		4.00		Red cell count, low
WBC K/uL		4.1		4.2		3.9		3.7		White cells, normal

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."

More ASH reports coming up.

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.

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 :-)

Marching, Marching ...

Myeloma doesn't give up easily.

I started a curcumin regimen on June 27. Today I got the results. They were not terrible, but sadly, they do not show much benefit from nine weeks of curcumin treatment. Here are some numbers:

• Free lambda light chains are down 12%, and
• “Spike” (SPEP) is down 3% to 1.90 g/dL, but
• IgG is UP 12% to 3110 mg/dL, and
• Serum calcium has edged up to 10.4 mg/dL, which is above the normal range for the first time ever.

Actual values from key tests are displayed graphically in the charts and numerically in the test result table. At bottom, it appears that the cancer is still advancing slowly and relentlessly. That’s what it does, and in my case the curcumin seems to have little effect.

Doc and I had quite a discussion today. He really wants to put me on Revlimid right away. I have lots of questions about that, such as:

• Should we hit it easy, shoot for a partial remission and stability, or
• Should we hit it hard, with more drugs, and shoot for a longer-term remission?
• Why Revlimid and not Velcade, when we know that Thalomid (thalidomide), another “IMID” drug, has already failed?
• Why not wait until there are symptoms, as Mayo would do?
• Is the above-normal calcium already a symptom?

We didn’t decide these issues; I put off the decision for another month at least. Meantime he reluctantly consented to prescribe low-dose naltrexone (LDN) for that period, five weeks actually. I will take that prescription drug, along with the curcumin and perhaps another supplement, for those five weeks and then we will see. In addition, he ordered another x-ray skeletal survey, which I will schedule ASAP.

The doctor believes that time is getting short, looking at the high IgG of 3110. But if that is a problem, it should also show up in other tests, which so far look pretty normal. Or it will show up as lesions in the bones, which we will soon determine. I’m trying to get the right balance here, of risk from the myeloma versus risk from the drugs that treat myeloma.

Meantime, I figure on living life to the fullest. Live one day at a time and make it a masterpiece!

Related links:

• My Myeloma: A discussion of my myeloma, not very technical.
• My Treatment History: Not technical.
• My Lab Test Charts: Graphic displays of several key test results over time, like the one below showing IgG from 2003 to date.
• My Lab Test Table: Best with a wide browser window. Very technical.

Curcumin in Oatmeal

Margaret recently posted some information indicating that the efficacy of curcumin may be improved by heating it. I decided to try some curcumin in my morning oatmeal, to see if that was at all edible.

I'm happy to say that it was edible. In fact, to my surprise, curcumin didn't change the taste of the oatmeal much at all. What does that say about my sense of taste? I don't know. I believe that curcumin may be an important component of the spice turmeric, but it is not the component that imparts flavor! I even used one gram each of two different brands of curcumin. This was only one fourth of my daily eight-gram curcumin dosage, however; it is possible that a full day's dose would impart more flavor (and thus be more objectionable). It did make the oatmeal very yellow, which is not very appealing.

The problem is that I don't know how much heat is necessary to improve curcumin's bioavailability, or how much is too much. Maybe nobody knows. I added the curcumin after the oatmeal was cooked, but it would get a lot more heat if added during the cooking as you would do if you were preparing an Indian dish with turmeric.



Oncologist tomorrow - I'll get my latest test results, including and especially the results of my first two months on curcumin.

Electrolytes OK

About a week ago I had blood drawn for lab tests. They took two different vials, an unusually low number. But today when I called, the nurse said that all the doctor had ordered was "electrolytes." When I asked what that was, she said "sodium, potassium," and such. Huh. Everything was normal, said she.

I wonder why we even did the labs. Are we really concerned about sodium? Clearly, there's something here that I don't understand.

I'm still taking curcumin, 8000 mg per day, and I think that the doctor wanted to be sure that curcumin in such high doses did not throw other things out of whack. If so, he probably did his normal chemistry panel, which includes sodium and potassium, but (more importantly?) renal and liver markers such as creatinine and albumin. If so, I want to see those numbers, normal or not! She's mailing the report.

I do wonder what the second vial of blood was for, and hope that it was for a different test, like maybe the SPEP, and that she mails that one too! Doctors offices. Sigh.

More when the reports arrive.


Two lunches and a dinner plate:
Organic whole spelt rollup, leftover roast local no-hormone no-antibiotic lamb, organic romaine, Sunshine sauce (organic yogurt, minced cucumber, organic lemon rind, minced garlic, dill), very ripe nectarine. Estimated Weight Watcher points = 6.


Chicken bratwurst, whole wheat bread, organic pickle relish, watermelon, kiwi, organic nectarine, papaya. Estimated Weight Watcher points = 7.


Wild caught Alaskan salmon, organic yogurt, spices, peas, beans, slivered almonds, dried cranberries, homemade sweet potato salad. Estimated Weight Watcher points = 9.

Good X-Ray Report

At my last doctor visit I mentioned a slight ache in my left upper arm, and the oncologist ordered an x-ray just to rule out a plasmacytoma, which can surprise any myeloma patient at any time. The results are in: NO PROBLEM. That's a relief, and it helps with another decision.

I have a tooth that's rather iffy - hemi-section and root canal years ago, and now starting to get weak at the root. My dentist has suggested it's time to take it out. No pain, though, and no relation to myeloma.

EXCEPT: myeloma attacks bones, and that usually requires treatment by bisphosphonate drugs such as Aredia (pamidronate) or Zometa (zoledronic acid). These are the heavy-duty cousins of Fosamax (alendronate) and similar drugs used to treat osteoporosis. Aredia and Zometa can help rebuild the myeloma-weakened bones, but they can also cause a serious side effect called osteonecrosis of the jaw (ONJ), a very unpleasant and somewhat dangerous condition. ONJ often starts when a person taking Zometa or Aredia has dental surgery.

I've been holding off the removal of that bad tooth while waiting for these x-ray results. If the x-ray had disclosed a problem in the bone, I would have been headed for heavy-duty bisphosphonate treatment and would not want an open hole in my jaw. But with this all-clear signal, I'm going to get that sucker out and get the jaw healed right away.


Supper:

Free-range bison, no-hormone no-antibiotic beef, organic sweet potato, organic carrots, onion, organic catsup. Estimated Weight Watcher points = 6.

Next-day's lunch:

"Take and Bake" organic honey whole grain bread, cold roast free-range bison and anti-biotic-free hormone-free beef, organic bread and butter pickles, organic nectarine, organic cashews. Estimated Weight Watcher points = 7.

Busy bee on the Garden Tour.

Two Weeks on Curcumin

So far so good. No problems, and in fact I can't really tell that I'm taking it. Some people have reported that it fixed symptoms other than the myeloma, but so far it hasn't cured my plantar fasciitis or my chronic headaches.   :-)   I still treat those in other ways.

I have gained a little weight, maybe two pounds, but I can probably point at the plantar fasciitis as the culprit because I can't run and therefore don't get quite as much exercise.

I ramped up rather quickly on the curcumin: two days at two grams, two days at four, three days at six, then eight grams, all the while looking for problems and finding none. The recommended ramp-up is much slower, taking three weeks. Some people take the whole 8-gram daily dose at one time, though, and I take only two grams at a time, four times per day.

Test results in about six weeks; appointments for labs and doctor are not made yet.

Tonight's dinner:

Farmed pan-fried tilapia (Honduras), broccoli, "mango salsa" including organic apricot, organic plum, mango, watermelon, cucumber, and pineapple, with juice of organic lemon on the fish and broccoli, juice of organic lime on the salsa, a little salt on the fish. Sunshine liked this plate enough that she posted a photo of it on her blog too, with more details.

Myeloma's Relentless March

We stopped thalidomide two months ago, and I have had no treatment since. Blood tests were a week ago, and today I saw my doc, an oncologist/hematologist.

IgG, M-spike, and free light chains were all up from a month ago, though none by a surprising amount. I didn’t get a copy of a B2M result; I don’t yet know if it was done. Actual values from key tests are displayed graphically in the charts and numerically in the test result table. In short, it appears that the cancer is still advancing slowly and relentlessly. That’s what it does.

I started a curcumin regimen on June 27. I also asked my doc to think about low-dose naltrexone (LDN) as another complementary treatment, and he agreed to check into it. We both understand that if the myeloma makes a sudden jump, we will probably go back to “conventional” treatment such as Revlimid.

Despite their inexorable climb, my cancer numbers are still so low that it is barely considered “smoldering” myeloma. This is good. Nevertheless, I have recently felt an occasional ache in my left upper arm which I cannot pinpoint by palpation. When I suggested to the doctor that my numbers were too low for that to be a bone problem, he pointed out that a plasmacytoma can occur anywhere. He has ordered an x-ray of that bone.

In one month we will check liver and kidney function, and in two months we will do another full set of tests. Meantime, I figure on living life to the fullest. Live one day at a time and make it a masterpiece!

Related links, also listed on the right sidebar:

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

Hormone- and nitrate-free ham, organic red grapes, Jarlsberg cheese, Roquefort mustard, Dove dark chocolate. Estimated Weight Watcher points = 8.

Starting Curcumin Regimen

Food Pictures:

You may notice the food pictures on this blog; they're on my running blog too, different ones. I just wrote a post about the food pictures on my running blog here if you're interested.

Curcumin Ramp-up:

So far so good! I've now taken two grams of curcumin for each of two days, and four grams per day for two more days, with no detectable side effects except possibly one (1) hive. Just one place on one shoulder, gone a day later, quite likely not caused by the curcumin, though hives and rash are side effects that have been described by others. Next trick is six grams, which I will do today. If there are side effects I'll back off, otherwise I will hold at this dosage for a few days before increasing to eight grams per day.

I feel good though; a general sense of well-being. That could be in my head, the product of a nice Sunday afternoon heading toward the Fourth of July. But maybe the curcumin plays a part too. It is, after all, an anti-inflammatory and who knows what else. For much more about the benefits of curcumin, in fact ANYTHING about curcumin, see Margaret's Corner.

The Plan:

• Single dose: Two grams of curcumin and one gram of oil:
  • One gram of "Doctor's Best" curcumin with bioperine
  • One gram of "NSI" turmeric extract with bioperine, and
  • One gram of "Member's Mark" organic flaxseed oil or another beneficial oil.
• Four of those 2-gram doses per day, between meals:
  • Midnight. I get up a few times in the night for BPH anyway.
  • 5:00 or 6:00 am, before morning coffee or breakfast.
  • 10:30 am, well before lunch.
  • 4:30 pm, well before dinner.
• Empty stomach when possible. Experts say this works best. Some bottles of curcumin say to take it with meals, however, so I won't be a stickler.
• If a dose is missed, double up on the next one. Some people take all eight grams at once anyway. I'm spreading it out so that the curcumin is in the blood more of the time, though it might actually work better to take it all at once so that the peak concentration goes higher; I don't know.
• No aspirin. I have been taking an 81-mg aspirin daily for years, but curcumin thins the blood so I will stop. But if I were taking Revlimid or thalidomide, I would certainly want to discuss this with my doctor.
• Two brands, an equal amount from each, on the off-chance that one brand is not up to its advertised standards.
• Margaret also takes quercetin with her curcumin. I don't yet, but may start.

I am not a doctor. Curcumin in these dosages is NOT benign; if it were benign it wouldn't help. No one knows the long-term effects of curcumin in these dosages; I am taking a calculated risk. If you are considering curcumin, please consult with your oncologist or primary physician first, and be sure that you monitor the effects often enough.

The curcumin brands mentioned above are described in greater detail in a previous post. A single dose is pictured below, curcumin 2 grams and flaxseed oil one gram.




Organic oatmeal, organic fat-free milk, blueberries, organic strawberries, organic nectarine, organic plum, pecans. Estimated Weight Watchers points = 5.

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, ldninfo.org. 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.


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

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.



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.

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:
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.