Visit to Naturopath

Sunshine and I visited our naturopath Dr. Healy Wednesday, to deal with several questions raised by the new CC-4047 drug trial that I have started:

Bone Building:

At Mayo, Dr. Lacy and I discussed a prescription for generic fosamax to strengthen my bones. I don't actually have that prescription yet - perhaps she's rethinking it. Dr. Healy seemed uncomfortable with the fosamax, partly because of the risk of osteonecrosis, and referred me to a recent article in WebMD explaining the benefits of Vitamin K2 for rebuilding bones AND for scavenging calcium away from places it shouldn't be, such as arteries. A double-good whammy!

The issue is complicated for me because Vitamin K1, the most readily-available form, enhances the ability of the blood to clot. In my case, the CC-4047 drug that I take brings its own modest risk of blood clots, usually seen as a "deep vein thrombosis" (DVT). I don't want to increase that risk by taking the wrong supplement. Most Vitamin K supplements contain a lot of K1 and a little K2, but happily there are a few that are Vitamin K2 only, such as this Carlson brand. Until I get a better handle on this issue I am going to take only a modest amount of K2, in the range of 5 mg, with no K1 except what I get in food.

And I think I should talk to my doctor about getting my INR checked once in a while. INR is a measure of the blood's ability to clot.

THIAA:

Tetrahydro-iso-alpha acids are derived from hops (who knew?) and sold under the brand name Kaprex AI. It is advertised for joint support and for normalizing the immune system. Recently, however, scientists have discovered that THIAA has anti-angiogenic properties - it inhibits the growth of tiny new blood vessels. This is one mechanism by which thalidomide is thought to go after myeloma. Therefore, it is possible that Kaprex AI or an equivalent product might have some of the benefits of thalidomide without its side effects, though I am not aware of any studies to show this. Dr. Healy suggested that an appropriate dosage might be one tablet three times per day.

I am already taking a thalidomide analog, CC-4047, so Dr. Healy and I agreed that it would be quite inappropriate for me to take this as well. But in the future, if my participation in the CC-4047 trial ends, I may want to remember this product.

Side note: The manufacturer of Kaprex AI does warn against use by pregnant women, but the warning is generic and not very emphatic. If it really is anti-angiogenic, Kaprex AI should carry a very strong warning which would include mention of birth defects as a likely consequence of taking Kaprex AI.

Borage Oil:

Dr. Healy suggested borage oil instead of evening primrose oil, because borage oil contains about two and a half times as much GLA. I seem to recall that a blog reader also made that comment. GLA has several benefits, but in particular it is an anti-inflammatory and may combat myeloma in the same manner as other anti-inflammatory agents. She suggested organic borage oil, but I was unable to find it in organic form. Barleans Organic Oils is one company that sells borage oil, but theirs isn't organic, though they do make it hard to figure that out. Isn't that false advertising? I think so. Anyway I ended up ordering it from LEF because they have a special going. If you have a source for organic borage oil, please comment.



Recent lunch - Homemade pizza: Gluten-free brown rice pizza crust, chunks of free-range bison, organic parsnips, fresh pineapple, homemade organic pizza sauce, parmesan cheese.


Recent dinner: Turkey curry (organic turkey, organic peas, coconut milk, more), clementine, organic medjool date, cantaloupe.

Mayo Wrapup

Four trips to Mayo, 680 miles, and oh so worth it.

Today's dex headline:

I had a little trouble sleeping last night, awakened early and laid there with my brain buzzing most of the time. Otherwise the Sunday morning after Friday night's dexamethasone (dex) is uneventful. I feel fine, and not so hopped-up as yesterday.

Analysis of test results:

Here is a little table of some of the important results, with the "bad" ones first, then the "good":

Test & units	Dec 26	Mar 7	Comments
M-Spike g/dL	2.05	2.70	I don't quite believe it, see below
BMB Plasma cells %	6.7	5-10	Another result showed 22% - ??
Calcium mg/dL	10.0	10.2	Above Mayo normal range of 10.1
FreeLite mg/dL	4.67	5.88	Gives credence to the M-Spike
PET Scan		Pos	Showed up VERY clearly
Bone Survey	Neg	Pos	Vague area of lucency in scapula
All CBC values	Lo RBC	OK	No anemia or any "penia"
IgG mg/dL	3000	2960	Unchanged
Creatinine mg/dL	1.0	0.9	Lowest ever, test difference?
Albumin g/dL	4.2	4.5	Best in 18 months
Beta-2 M mg/L		1.89	Lower than a year ago

Long-term historic values from many tests are displayed graphically and numerically on separate pages, see "related Links" below.

My interpretation:

• The M-Spike reading may be high because of laboratory differences. In any case this test, while important, is not altogether reliable.
• The normal CBC, albumin, creatinine, and stable B2M values indicate that my soft tissue organs are not being harmed yet.
• The high calcium, the bone scan, and especially the PET scan clearly indicate damage to bones. Dr Lacy toggled through the entire computerized PET scan from my head to my knees and those active areas showed up very graphically.
• Damage is thus far limited to both scapulae (shoulder blades) and the T10 "spinous process," which I believe is NOT the load-bearing part of the vertebra.
• I do not feel pain in any of those places, but I sure am curious if that's the same vertebra that DID hurt five years ago and which led to the myeloma diagnosis. I will try to find out.
• Click on the little graphic to see the written PET scan report. Click "return" to get back.

Related links:

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

Back to Mayo in one month. Meanwhile: CC-4047, Dex, Zantax, aspirin, acyclovir, and selected supplements.

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.

New Chapter

I now officially have active, ISS stage 1 myeloma. It's not MGUS (monoclonal gammopathy of undetermined significance) or "smoldering" myeloma, and it's not what I was hoping for. That's the bad news.

The good news is that my myeloma is growing only very slowly, with a Mayo Clinic labeling index of 0.2, described as a "VERY LOW proliferative rate" (their emphasis). For anyone with myeloma this is very good news and cause for a lot of hope, for both the short and the long term. Dr. Lacy said that a person with this labeling index can expect to live a long time with myeloma. I didn't press her to quantify that, because we all know that the doctors can't give us hard numbers on our survival.

I will digest the results more and post again in a day or two, but here are some highlights. Bad stuff:

• In two months, M-spike jumped from 2.05 to 2.7 g/dL. I suspect (and hope) that some of this jump is due to a difference in testing - this is my first-ever set of labs from Mayo.
• Calcium, Beta-2 microglobulin, and lambda free light chains are all up from two months ago and all higher than they should be.
• Most sinister: The PET scan clearly shows three very active regions in my bones: one in each shoulder blade, and one in the T10 thoracic vertebrae midway between the waist and the shoulder.

Good stuff:

• Platelets, red blood cell count, hemoglobin, creatinine, and albumin are all well within the normal range.
• Same with LDH and C-reactive protein.
• IgG is the same as the last test at MOHPA, suggesting that the M-spike may not really have changed as much as the numbers indicate.
• No abnormal proteins were found in the 24-hour urine.

Especially because of the PET scan, Dr. Lacy thought it was time for treatment, to deal with the hot spots in my shoulder blades and spine before those bones fracture. I reluctantly agreed; the last thing I want is a broken back. She suggested two possibilities:

• Revlimid with low-dose dexamethasone (a steroid), or
• A phase-II trial of a brand-new not-yet-approved drug with the code name CC-4047. This is a new Celgene drug, intended to be an improvement on Revlimid, which itself is an improvement on thalidomide. This too would be taken with dexamethasone.

I chose the trial.

When the drug-trial coordinator asked Dr. Lacy how soon I should start, she replied "yesterday!" Since then I have taken an EKG and had another full x-ray bone survey, and I will see her again tomorrow to wrap things up and start the trial.

Dex tomorrow night. Oh my.



Today's lunch before traveling to Mayo: Papaya, pineapple, organic medjool dates, pistachios, orange, organic fat-free yogurt.

Mayo Clinic, Day 2

A Positron Emission Tomography (PET) scan employs a radioactive isotope which acts like a tiny lighthouse within the body. The body is transparent to this radioactive light (gamma rays), so the PET scanner can see it and can locate the isotope with precision. The isotope is attached to sugar (glucose) molecules, which are injected into the body and taken up in greater amounts by hungry cancer cells than by the body's other cells. Thus the scanner can see a lot of these tiny lighthouses wherever there are concentrations of cancer cells. In myeloma patients, the PET scan can spot hot spots capable of causing bone damage, before the damage is ever done.

PET scans are expensive, Sandy the nurse said $3500, and for myeloma patients they are not covered by Medicare. However, Medicare is currently funding a study of the usefulness of PET scans for myeloma, so scans are available to a Medicare patient if the patient's doctor is willing to do the paperwork required for the study. Happily, Dr. Lacy was not only willing but suggested the PET scan, for which I will always be grateful.

I was seated in a recliner chair, and Sandy first took a blood sample from a finger, and then injected the isotope (looked like clear water) into a vein. There was no sensation from the injection, except a slight, momentary coolness at the site. Then I sat for an hour, mostly dozing, to give time for the body to distribute the isotope to the organs that were most hungry for the glucose. During that hour I was instructed to be as still as possible, to avoid using muscles, because working muscles demand a refill of glucose, and we wanted as much of the glucose as possible to be free to go elsewhere.

Then I walked to the scanner and laid on a table in front of a big horizontal tube that looked like an MRI scanner, except larger in diameter and shorter in length. As with an MRI, the table scooted me in and out of the tube, but unlike an MRI it was almost silent. It was far less intimidating than a normal MRI. My arms were in an uncomfortable position over my head, or else I would have gone to sleep. The scan itself took about 30 minutes, after which I waited a few minutes more while they checked to see if they got what they wanted. I did ask the technician if there was anything that she could tell me, but she winked "that's what the doctors get the big bucks for."

For me, this seems like the big test. My blood tests have thus far always been negative for the other C.R.A.B. symptoms (organ damage), as have all of the x-rays, so this one is most likely the key test. Sunshine and I agree - whatever the answer, we want to know it, and treatment decisions will probably hinge on it. We'll know in a few days.



Recent lunch: Organic chard with pistachios and cranberries, organic vegetable mix with shredded asiago cheese, two clementines.

Mayo Clinic, Day 1

I like Doctor Lacy. No nonsense, but caring and not authoritarian. Some of the things that we discussed:

• My history with myeloma, from my own perspective. She said that she takes it in best that way,
• My lifestyle, especially my interest in running. She is a runner too,
• All of my previous test results, of course (I showed her some of my charts),
• The fact that I have no apparent C.R.A.B. symptoms yet (far from it),
• The possibility of getting into a Celebrex trial (I brought it up, but she did not dismiss the idea),
• Possible stem cell collection,
• The difference between treating symptoms and treating numbers, and
• Additional tests which Mayo can do, including
  • Another bone-marrow biopsy; the last one was a year ago,
  • FISH studies on the bone-marrow aspirate, and
  • A PET scan to look for hot spots in my bones.

Most of that was done today, actually. Things seem so easy at Mayo. I was most impressed by the bone-marrow biopsy. My previous biopsies were done in a hospital, and required check-in, gowning, and a long wait afterward before I was allowed to sit and then stand. It seemed like a major deal.

In contrast, at Mayo I walked into the procedure room, disrobed only enough to expose my hip, and was walking out within 20 minutes. Didn't even have to take of my shoes! These guys checked the aspirate with a microscope right then and there, to be sure they got what they needed. It was easily the least-painful BMB of the four I've had. I think it's the difference between doing a procedure occasionally, and doing it all day long. One trick: the person doing the procedure applied pressure to the incision afterward until he was VERY SURE that the bleeding had stopped completely. I don't recall anyone doing it quite that way before. And because he did that, there is still no trace of red on the bandage now, hours after walking the hallways of Mayo and then driving the 90 miles home.

Further tests are scheduled for later in the week.

Finally, toward the end of the week, I have another appointment with Dr. Lacy. In my best, most hopeful scenario, she will tell me that the PET scan shows no lesions, that my particular myeloma is not as aggressive as most, that my numbers are stable, and that watchful waiting is a reasonable choice. If so, I will choose it! If she does recommend treatment, we will discuss the risks of different treatments, including the risk of postponing.



Recent breakfast: Organic oatmeal (under there somewhere), Don's berry/nut/fruit mix, fresh mango, organic blueberries, banana, Hershey's dark chocolate, organic nonfat milk.


Recent lunch: Sunshine's gluten-free lasagna with brown rice pasta, organic spinach, organic ricotta cheese, organic pasta sauce, and organic yogurt, orange, organic apple.


Recent dinner (salad): Organic romaine, fresh mango, toasted sunflower seeds, avocado, dragon fruit, organic cottage cheese, organic red wine vinegar.

Negative Celiac Tests

At my last oncologist visit, we discussed the connection between myeloma and celiac disease (gluten intolerance). Because one of my sons has celiac disese, he ordered a few extra tests to be drawn the very next day. Here are those results:

Test Name	Result	Ref Range
Endomysial Antibody IgA	Negative	Negative
Gliadin Antibodies IgA	< 1.0	< 20.0 U
Gliadin Antibodies IgG	< 1.0	< 20.0 U
Tissue Transglutaminase IgG	3.0	< 20.0 U
Tissue Transglutaminase IgA	7.3	< 20.0 U

The tests labeled "gliadin antibodies" are also labeled "deamidated gliadin."

The first test, Endomysial Antibody IgA (EMA) is considered very specific for celiac disease, with almost no false positives or false negatives according to a Canadian study.

All tests were performed in a Mayo Clinic laboratory.

It appears that I DO NOT have celiac disease, although there are still two unresolved questions:

• I had been on a gluten-free diet for two months before these tests were drawn. Should I have eaten wheat before the tests, as a "gluten challenge"?
• Is it still possible that I have a subclinical case of celiac disease that causes inflammation if I eat gluten?

If the answer to either question is "yes," then I should continue the gluten-free diet. Otherwise, maybe it doesn't matter. It's a healthy way to live, but it's a lot of work and it's hard to eat out.


Recent lunch: Organic swiss chard with pistachios and cranberries, organic polenta, organic Braeburn apple, organic medjool dates.

Regimen Correction

When I first posted my myeloma treatment regimen below (today), it included 1600 mg of LEF Super Bio-Curcumin. Since then, I've taken the LEF curcumin out of the mix. Here's why:

• Another user of LEF Super Bio-Curcumin posted negative results on Beating-Myeloma.org.
• My own results with the LEF curcumin were equivocal, at best, though I previously had positive results using only "regular" C3 Complex.

LEF Super Bio-Curcumin is reputed (by LEF) to have approximately seven times the bioavailability of regular curcumin. But does this come at a cost? Whatever is done to the curcumin to enhance its bioavailability, is it possible that the result is not as good for combating myeloma? Or worse, could it possibly even strengthen the myeloma somehow? Or, is it possible that there is an optimum concentration of curcumin in the blood, and that we both exceeded that?

Whatever, Sunshine points out that there are two negative responses with LEF Super Bio-Curcumin, and no positive responses that we know of (PLEASE correct me if you have more data). In contrast, there is abundant positive data for C3 Complex. There may be nothing at all wrong with LEF curcumin, but I am not in the mood to be a guinea pig, and for now I will discontinue the LEF and return entirely to C3 Complex. Today's earlier post is already corrected to reflect that change.

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.

Humpf!

Disappointing Test Results.

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

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

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

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

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

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

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

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

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

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

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

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

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



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


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


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

Eat Dirt!

Actually.

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

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

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

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

So that's the dirt from Lake Woebegone.

Merry Christmas and Happy New Year to all!