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.

Family Means Garden Tour

Every year an organization called Family Means in Stillwater, Minnesota, organizes a "garden tour" of several local prize gardens. I had a little fun taking some pictures on the tour and made a slide show of them.

Click on the photo below to go to the slide show, then click "start" at the bottom of that page.

Too Many Food Pix

Either I'm eating too well or not blogging enough, because there are too many food pictures in the queue. So here are a few, just for no reason at all.



Chicken/feta/spinach bratwurst, whole wheat bread, Roquefort mustard, blackcurrant jam, organic plum. Estimated Weight Watcher points = 7.


Jim's super-fresh beans, watermelon, half of a chicken/feta/spinach bratwurst. Estimated Weight Watcher points = 2.


Blueberries, orange, leftover July 4 party brownie ("No Pudge" fat-free fudge brownie mix plus organic yogurt, Hershey's chocolate chips, vanilla extract). Estimated Weight Watcher points = 3.


Organic whole-wheat spaghetti, grass-fed bison & spiced ground hormone- and antibiotic-free pork, organic spaghetti sauce, organic parmesan cheese, jumbo olives. Estimated Weight Watcher points = 7.


Organic romaine lettuce, organic cucumber, organic celery, Danish blue cheese, avocado, organic strawberries, raspberry vinegar, "Take and Bake" organic honey whole grain bread. Estimated Weight Watchers points = 3.

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.

Labs Today

Off to see the wizard, toting a jug with 2.1 liters of urine collected over the previous 24 hours. Wait in the waiting room for about 15 minutes. Arm stick, five little vials of blood, the nurse tells me that the total quantity is about two tablespoons. I doubt it's that much, the vials are so small. She's quick and efficient. I ask her to wrap the cotton ball onto my arm, since I'm allergic to adhesive, and she's glad to do it.

I'll see the real wizard, my oncologist/hematologist Dr AP, on July 5. Then we'll find out what has happened since I stopped taking thalidomide a couple of months ago.

Meantime, the curcumin regimen starts NOW. Two grams today, ramping up carefully to eight grams per day over the next two or three weeks.



Dessert: Organic strawberries, blueberries, blackberries, slight drizzle of honey. Estimated Weight Watcher points = 1.

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.

Curcumin Arrived

I ordered modest quantities of each of three different brands of curcumin, just to see what they were like. See previous post. I'll start taking it in a few weeks, and by then will necessarily order quite a bit more from one or more of these sources.

Per Caplet: 1000 mg Curcumin c3 Complex 5 mg Bioperine From: Doctors Trust.

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Per TWO capsules: 1054 mg Turmeric Root Extract 6 mg Bioperine From: Club Natural

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Per TWO capsules: 1160 mg Turmeric Extract 5 mg Bioperine From: vitacost.com

The proposed amount per day is 8 grams (8000 mg), divided into two or more doses. I may decide to alternate two or three brands, on the off chance that the quality of one brand is not as high as advertised. I already do that with my multivitamin.

The capsules from Doctor's Best brand are sufficiently distinguishable from the capsules from NSI brand that I think they do come from different manufacturing sources. The caplets from AFI are quite different, more dense, and clearly not from the same manufacturing process. All of the capsules and caplets weigh significantly more than the amount of curcumin they purport to contain, a good sign.


Thin-cut pork chops, corn, oven-roasted rutabaga, two kinds of oven-roasted sweet potatoes, strawberry garnish.

Curcumin Sources in the USA

In a few weeks I'll be taking eight grams (8000 mg) of curcumin daily, with bioperine to enhance "bioavailability." I did a quick search to find sources. NOW has a nice 665-mg tablet, which I have been taking for some time, just one per day, but it does not contain bioperine. I could take the bioperine separately, but curcumin containing bioperine is readily available.

This was NOT an exhaustive search. Nothing is guaranteed, especially the prices and quantities. The following five sources include four different brands of curcumin with bioperine, in a variety of dosages per capsule. In the table below:

• "mg" is the milligrams of curcumin per capsule,
• "Qty" is the number of capsules per bottle,
• "$Cost" is the cost per bottle, somewhat dependent on quantity purchased,
• "$/8 gm" is the cost per eight grams, the daily dose,
• "Doses" is the number of 8-gm doses per bottle, and
• "Bioperine" is the amount of bioperine per capsule in mg.

Curcumin Brand	Web Site	mg	Qty	$Cost	$/8 gm	Doses	Bioperine
Proprietry C3 Complex	agelesscures	1000	100	26.95	2.16	13	5
AFI C3 Complex	doctorstrust	1000	60	14.09	1.88	8	5
Doctors Best	clubnatural	500	120	15.00	2.00	8	3
NSI Extract	vitacost	550	120	18.99	2.30	8	2.5
Super Curcumin	lef	800	60	18.68	3.11	6	5

I ordered from three of these sources this week, and received curcumin from VitaCost; the others should arrive next week.


Romaine, cucumber, fennell, avocado, strawberries, blackberries, blue cheese, raspberry vinegar. Estimate: Two Weight Watchers points.