Tuesday, September 25, 2007

Score One for Low Dose Naltrexone

My friend Max put me onto low-dose naltrexone (LDN) some time ago. I blogged about it in June. It is a prescription drug approved for treatment of drug addiction, but used by a few doctors for cancer and other maladies, off-label and in small doses. It is thought to work by stimulating the body's endorphins back to normal levels, thereby restoring the body's immune system.

Long story short: Max called today to report his own results: IgM was over 3000 (normal is 300) and has DROPPED 18% in four and a half months on LDN. Max is not an excitable person, but he certainly did sound pleased with this result.

To be sure, an 18% reduction in IgM could be just a normal variation, or almost so, a combination of variability in the test and actual variability in his blood. Though his doctor seemed underwhelmed, Max thinks this was an actual drop, because his numbers had been steadily climbing by about that amount at every test interval. The future will reveal the truth, of course.

Max does NOT have myeloma; he has Waldenstrom's Macroglobulinemia (what a mouthful). Whereas myeloma patients normally talk about IgG or IgA, his naughty protein is IgM; it affects the body somewhat differently and is treated somewhat differently. If he had myeloma instead, who knows whether he would have experienced this benefit from LDN?

Hoping that it can, I am taking LDN too, for the past eleven days, along with curcumin, quercetin, resveratrol, mostly-vegetarian diet and the kitchen sink.

Smoldering Myeloma

Donna left a nice, informative comment on an earlier post here titled More Thoughts About Marching. This is my response, long enough for a post rather than just a comment.

We're the lucky ones, Donna, in my opinion. We found out about our myeloma by accident, long before we broke a bone, or suffered kidney damage, or whatever. We have the chance to pack a little more life into the next years than we might have done otherwise. Furthermore, we have the chance to learn about the treatment possibilities and about our own disease before having to make the serious life-changing decisions.

I'm in the position of making one of those decisions soon, because my particular oncologist is asking me to make it. Mayo and UAMC are right - studies have not shown any survival advantage in starting treatment early, so why suffer the symptoms of the treatments when there are none from the disease? Perhaps the answer is that early treatment may provide a higher quality of life even if it does not extend life; that is the proposition. At my last doctor visit I said to him that Mayo would wait until there are C.R.A.B symptoms, such as broken bones, kidney impairment, or anemia. He responded "I want to keep you from having those symptoms."

That sounds great, and I love that attitude in my oncologist! But the problem is that the treatments all have side effects, some of them permanent. I discovered this when I was treated with thalidomide; I won't bore you with the list! So it's a balancing of risks: (1) Risk of permanent injury from the myeloma, versus (2) Risk of injury from the treatments. I've been resisting hard-core treatments now for almost half a year, opting for alternative treatments instead, with uncertain results.

Here's my engineer's understanding of myeloma: Plasma cells normally produce immunoglobulins (Ig) which fight infections. The plasma cells remain in the bone marrow, and the immunoglobulins escape into the blood stream where they do their work. Malignant cells normally still produce immunoglobulins, but they are ineffective and often lack one of the "arms" that normal immunoglobulins have. They are distinguished by the type of immunoglobulin (there are several types, including IgI, IgA, & IgM). They are further distinguished by the remaining arm (or is it the missing arm?), which may be either kappa or lambda. Hence your myeloma, and mine, is IgG Lambda. In some people, the malignant cells do not produce any immunoglobulins at all, or very few; that form of myeloma is called non-secretory (nothing is secreted). And I think this is a continuum; some people may secrete only a little and others a LOT.

Sorry for the long blah blah, but I wonder if you are a non-secretor, or nearly. If so, it's not necessarily a bad thing except that it makes the myeloma harder to track. I'm surprised to see that ALL of your Ig numbers are below the normal low limits; I don't know what to think of that, except to guess that the malignant cells are suppressing the production of the normal cells which do produce immunoglobulins.

IgG by immunofixation detects both normal IgG and abnormal (monoclonal) IgG equally, as I understand it. There is another test called serum protein electrophoresis (SPEP) which can show just the abnormal IgG. I wonder what your SPEP shows. Perhaps NONE, if that is the meaning of the April notation.

I do not have Bence-Jones proteins in the urine. More commonly now, I believe, these are called "free light chains." My doctor tests for these proteins in the urine, and in the blood as well, using a test called FreeLite (nephelometry). So far I have not had more than a trace of light chains in the urine, but they are detectable and above normal in the blood. Light chains are often used to track the myeloma in people who are non-secretors, so your oncologist may be doing those tests for that reason; I assume that you are asked to submit a 24-hour urine at every test interval. I would encourage you to ask your doctor for copies of every single lab test or radiologist's report; I do that and I've never been sorry.

There are other ways for us (anyone) to communicate more directly. One of the best is the MMA List server, where myelomiacs or caregivers register as members and then receive emails sent to the list by other members. I've enjoyed this a lot lately. If you post a message to the list, people can respond through the list or directly to you. In any case, if you (or anyone) would like to email me directly, my address is minnesotadon at gmail dot com. Thanks, Donna, may your myeloma smolder forever!

Today's breakfast
Today's breakfast: Organic oatmeal, organic nonfat milk, blueberries, organic seedless grapes, banana. Estimated Weight Watcher points = 5.

Today's lunch
Lunch today: Sunshine bread (Arrowhead Mills gluten-free baking mix, organic corn flour, organic amaranth, organic teff flour, nuts, other goodies), organic squash, onions, organic salsa, organic chunky peanut butter. Estimated Weight Watcher points = 7.

Monday, September 24, 2007

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:

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.

Fruity breakfast
Today's breakfast, after the bike ride: Organic oatmeal, organic nonfat milk, banana, kiwi, organic grapes, organic nectarine, blueberries. Estimated Weight Watcher points = 6.

Yummy salad
Today's dinner salad: Organic romaine, organic plum, kiwi, avocado, organic salad beans (mostly under the lettuce), raspberry vinegar. Estimated Weight Watcher points = 4.

Love this dinner
Today's dinner: Alaskan wild catch halibut steak, organic sweet pickle relish, organic winter squash, organic salsa. Estimated Weight Watcher points = 5.

Tuesday, September 18, 2007

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.

Scrumptious salad
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.

Friday, September 14, 2007

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 :-)

Thursday, September 13, 2007

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: Chart of IgG

Wednesday, September 12, 2007

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.

Two grams of curcumin in the morning oatmeal

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

Wednesday, September 5, 2007

Pee in a Bottle

Tomorrow I take the test! Blood test, that is, and I'll contribute my other little donation to the lab. Glad I'm not the one who has to deal with thisUsually I get these tests:
  • Complete blood counts (CBC), which includes counts of red cells, white cells, platelets, hemoglobin, and the like. Lots more, most of which the doctor doesn't even look at unless they go out of range.
  • Chemistry, which includes calcium, sodium, potassium, and other mineral counts plus several other very important indicators such as creatinine (kidneys) and albumin (liver).
  • Serum Protein Electrophoresis (SPEP) which shows how much of the protein in the blood is in the form of "monoclonal" proteins that are cast off by the malignant plasma cells of myeloma. This is a crude but important indicator of the actual tumor burden. Myeloma patients call this the "spike," because it actually does show up as a peak on a graph. Bad Spike!
  • Light Chains, a particular component of the monoclonal proteins which can clog up internal organs and make things a lot worse, in fact they can make you dead. The doctor tests for light chains in the blood and also in the urine.
  • Other stuff. Sometimes they do x-rays, bone density measurements, bone marrow biopsies, and other tests. None scheduled this time, but maybe if the blood tests indicate an issue.
The big jug shown above is for a 24-hour urine collection. Little more than a nuisance for a man, it's a bit more troublesome for a woman (so I hear). That urine is tested for light chains, and perhaps for other naughty proteins. The jug holds a gallon, and I never fill it, but I'm told that some people need two or even more.

I'll see the doctor in another week to review the test results. If the numbers are stable or down, then the curcumin regimen is doing some good and we will no doubt stay the course. If they are up, then I know that the doctor will recommend Revlimid, a fairly new treatment which I am reluctant to start for several reasons. I will most certainly post.