LIVING WITH SMOLDERING MYELOMA IN TUSCANY
Margaret’s curcumin PROTOCOL
May 17 2007 post. Here it is, finally. I have been procrastinating about posting the protocol on my blog, even though I have written it out in countless private e-mails, mainly because I felt I should add a disclaimer, and, to be honest, I didn’t want to do that. The only reason I decided I needed to put a disclaimer here is because I have seen other alternative cancer treatment blogs do it.
So, first, let’s get the disclaimer out of the way: my blog presents information based on my own experience and research. I do NOT intend to tell others what to do, or to become a substitute for anybody’s healthcare provider. I am not a doctor, just a researcher who has come up with a protocol that so far has worked to keep my myeloma stable. I cannot be held responsible for any adverse effects resulting from the application of the information contained in my blog. So, for instance, if curcumin gives you a bit of diarrhea, don’t say I didn’t warn ya! (please see my Warnings Page).
Phew. Now that the disclaimer is out of the way, let’s get down to business. This is the protocol that I followed in January of 2006, when I first started taking curcumin, based on what I read etc.:
Week One: one gram of curcumin
Week Two: two grams of curcumin
Week Three: four grams of curcumin
Week Four (and thereafter): eight grams of curcumin
1. I will NOT recommend any specific curcumin brands. For one thing, I live in Italy, so my experience with U.S. brands is rather limited. For another, I do not want to sponsor any particular brand. Truth be told, I do not have a favourite brand. However, make sure your curcumin contains at least 95 % curcuminoids. Anything less than that is apparently useless.
(UPDATE (January 2008): well, okay, I finally did create a curcumin brands page, so please ignore the preceding paragraph. 
I was simply getting too many private and public requests for advice on this matter, and decided to go ahead and write out what I know thus far. See my curcumin brands page for that info)
I was simply getting too many private and public requests for advice on this matter, and decided to go ahead and write out what I know thus far. See my curcumin brands page for that info)
2. Curcumin with or without bioperine (from black pepper)? That is an issue that I am still thinking about and researching. My capsules do contain bioperine, which apparently increase bioavailability. And it is true that my IgG count plus other markers have improved. So it’s up to you to decide.
(UPDATE: I tried curcumin without bioperine, summer 2007, and the experiment failed. That doesn’t mean that it won’t work for you, just that it didn’t work for me.)
3. Divide your curcumin intake into two or three doses a day, if possible. I am considering another experiment (for the fall): dividing my curcumin intake into four doses in order to keep curcumin in my bloodstream in a more constant manner. But I haven’t tried that yet, so I don’t know if it works. For now, I am sticking to the twice a day protocol.
(UPDATE: I am now not convinced that dividing the dose into two or more doses per day is such a good idea. My friend Sherlock takes her curcumin all at once, in the evening, and her most recent test results showed an IgG decrease of 18%. She believes in throwing an “atomic bomb” (made of curcumin!) at the myeloma cells. I think I agree, but more work is needed. UPDATE on the update: I now believe in the “atomic bomb” theory…but only for curcumin, mind you. I am a pacifist in real life!)
4. If possible, take curcumin on an empty stomach. If your stomach rumbles, and you would prefer to take it with food, please leave me a comment or write me an e-mail, and I will get back to you with some advice. And please let me know if you experience any weird side effects, so I can post them on my Warnings Page. Thanks!
5. Other curcumin-takers and I take our curcumin with some sort of fat, as follows: flaxseed oil or fish oil capsules. Curcumin has poor bioavailability (see my Bioavailability Page), so until researchers come up with a more bioavailable formula, we will simply have to rely on our own research and the experience of others. Based on that experience etc., it appears to be best to take curcumin WITH some sort of oil capsule, so it will be better absorbed.
6. Since January, I have been taking quercetin about 15 minutes before curcumin. See my page on quercetin for more details. I now take one gram of quercetin a day.
7. Before taking curcumin, check with your healthcare provider, especially if you are doing chemotherapy. Also, check my Warnings Page, I repeat. Some folks should NOT take it, as a precaution.
8. Last but not least, have blood tests done before and after you try the initial eight-week protocol. Otherwise, how will you know that curcumin works for you? 
And please keep me posted! Thank you!
And please keep me posted! Thank you!
May 18 2007 post. My Curcumin Protocol (Continued). Since posting my protocol, I have received a few questions that I would like to address. Yes, it’s true, I HAVE done a lot of research on curcumin, but the more I do, the more I discover there is to do!, which is a very good thing, of course. As Mahatma Gandhi said, Live as if you were to die tomorrow. Learn as if you were to live forever.
One of the questions concerns why a curcumin-taker should build up slowly to eight grams (or more, actually; I know a few people who take 10-12 grams). As with any substance except perhaps for water, I think it’s a good idea to see how our body reacts to it. What if you began growing a second nose or something? Seriously, though, it’s merely a precaution. I personally have had no bad reactions to curcumin, even when I went up to nine grams of powder at one point last year. But a few people have reported diarrhea, which perhaps can be taken care of by cutting back on fiber intake (an MD Anderson nurse suggestion), and one person developed some kidney trouble, which may (or may not) have been caused by curcumin, even though Prof. Aggarwal replied that curcumin has a protective effect on the kidneys. And, in fact, I have never read of curcumin affecting the kidneys. But, hey, you never know, we are all different and react differently to the exact same thing. So, for those reasons, I think it’s best to err on the side of caution and build up to eight grams slowly.
A listserv friend, who plans to start taking curcumin soon, wrote about having chronic pain and headaches. I don’t recall if I have written anything about headaches on my blog, but this is what happened to me. I used to have horrendous headaches almost daily. I think they might have been caused by my very high blood viscosity (that seems to be one of my main MM symptoms), which essentially means that I have thick blood. Well, curcumin is a natural blood-thinner. Not long after I began taking curcumin, my headaches stopped. Gone. Poof! Just like that. I still get occasional mild headaches, probably because my blood viscosity is still on the high side, but nothing like those terribly painful pre-curcumin ones. I hope curcumin will take care of my friend’s headaches, too.
Another potential benefit: arthritic pain. Through Prof. Aggarwal, I met an Italian urologist who works in a Tuscan hospital. A wonderful man. He just sent me three books that he has written on curcumin and prostate cancer. Fascinating, well-written and containing historical and etymological information, which always makes me as happy as a little kid opening birthday presents. There is also some very useful information on curcumin bioavailability, so I will soon be posting a few comments on that issue. At any rate, he told me that he takes curcumin for his arthritis. And that rang a bell. Before I took curcumin (and I know I posted a few words on this topic, but it doesn’t hurt to reiterate a point, sometimes), I had a difficult time walking up the stairs in my house. I had to go up slowly, and pause now and again. My knees hurt and made scary creaky noises. I now dart up my stairs like an adolescent mountain goat. No problem whatsoever. No more creaky noises, no more pain. Another stupid thing: I used to have to sit on a step stool in order to put laundry inside my washing machine (in Italy, we have front loaders), because it hurt me to kneel down. I now can kneel with no problem, and pick up things from the floor (like cat bowls) without any trouble. There are studies on curcumin and arthritis, I have discovered. I am not surprised.
There is no denying that I am obsessed with curcumin. But with good reason. Curcumin is keeping me stable AND giving me many side benefits, including, as I have reported elsewhere, a substantial decrease in cholesterol, which is almost normal now (yippee!) for the first time in years. I checked as far back as 1999: it was 73 mg/dL HIGHER then. Plus, I am mentally more alert. I actually remember things now. I used to be such a scatterbrain: I would write notes to remember things and then forget where I put them. Check out the studies on curcumin and Alzheimer’s disease. Curcumin may prevent AD, which comes as no surprise to me. The AD-curcumin topic would merit a post of its own.
May 19 2007 post. I should have emphasized the following point more forcefully: before taking curcumin, or any other substance for that matter, I think it’s a good idea to speak with your healthcare provider, even if you are NOT doing chemotherapy. In January of 2006, my husband and I took the curcumin-myeloma studies to my former haematologist (who retired in August) and discussed the matter with him. At the time, he was suggesting that I do two cycles of Velcade, then an autologous SCT (stem cell transplant) in the summer of 2006. Happily, none of that ever came to pass, thanks to curcumin.
His reactions during that January meeting gave me the distinct impression that he was sceptical, but he did tell me to go ahead with the initial eight-week curcumin protocol. However, he added that I would have to start chemo if curcumin did not work. At the time, I said, “sure, okay.” Of course, curcumin DID work, and, as a result, my surprised (I think!) haematologist informed me that he had started sprinkling turmeric over his food. But the point is, I didn’t start taking curcumin without informing my doctor. I should add that I felt (feel!) so strongly about curcumin that I would have followed the eight-week protocol even if he had advised me against it. I can be stubborn at times! But the bottom line is: I feel that it is best to be open with our doctors, even if we think they will disapprove.
Of course, nobody can predict the long-term effects of curcumin and the other substances that I am taking or plan to take. So, while I remain cheerfully (and stubbornly!) confident that I will remain stable on my protocol, only time will tell.
Update (November 2008). In January-March 2008 Sherlock and I tested BioCurcumax, or BCM-95. Allegedly a more bioavailable form of curcumin. Well, it didn’t work for us. See my March 18 2008 post. My markers have not recovered since then. Bummer. I had high hopes for BCM-95. From now on I will stick to C3 Complex. Period.
https://margaret.healthblogs.org/life-with-myeloma/discovery-of-curcumin/my-curcumin-protocol/
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CURCUMIN BRANDS/SOURCES in the U.S. and Europe
September 24 2007 post. Yesterday I received a blog comment that turned out to be the straw that broke the camel’s back. In a good sense! Until then, I had rather stubbornly decided not to recommend or even list any curcumin brands or sources on my blog, but I realize that this type of information might be useful to those thinking of taking curcumin but with no idea where to buy it (so many websites sell it now, and it’s hard to separate reliable from unreliable ). So I have changed my mind. Of course, let me state first and foremost that I have no financial or other type of interest in any of the brands or sources that I will be listing below. Okay, with that out of the way, here goes.
Curcumin brands and sources in the U.S.A.: capsules
1. Please go see Don’s excellent list: http://tinyurl.com/34byoj. He does us the huge favour of comparing costs (per capsule, even). The only addition that I would make is that Doctor’s Best can be bought a bit more cheaply at Vitacost, which is where I generally order most of my supplements. Okay, I take that back, the price has recently gone up to $ 14.74. Still, a few cents cheaper. As we say in Italy, tutto fa brodo, which literally means everything makes broth, but is properly translated as it’s all grist to the mill, hey, even just a few cents. 😉 Ok, seriously, now. Don has also posted a lot of good information about curcumin, and, in particular, I would suggest a read of his post on curcumin and nanotechnology: http://tinyurl.com/3as7we Of the brands listed by Don, I have taken NSI and Doctor’s Best. I had fewer stomach gurglings with the former, but of course that doesn’t mean it is better or worse. I know that Don mixes and matches his capsules a bit, which I think is a good idea, especially in order to avoid taking too much bioperine. I read that too much black pepper is not good for us in the long run (I have posted about this), so please remember not to add black pepper to your food if you are taking eight grams of curcumin WITH bioperine.
2. There is also another source for capsules (and perhaps even powder, but that is a question you would have to ask the company) at: http://www.turmeric-curcumin.com/ I have never personally ordered from them, so I cannot say much except that their curcumin does not contain bioperine and is not the C3 Complex curcumin by Sabinsa. Just another option. Ah, if you scroll down their homepage, you will also find up-to-date news about curcumin, which can be very useful.
3. November 10 2007 UPDATE, taken from my September 15 post: Life Extension Foundation sells a product called Super Bio-Curcumin”: http://tinyurl.com/2aarkp Here is an excerpt from the LEF web page: The 100% natural curcuminoids complex in Super Bio-Curcumin ® is a patent-pending synergistic blend of curcuminoids and sesquiterpenoids with enhanced bioavailability and sustained retention time in the body confirmed by human clinical studies. Super Bio-Curcumin ® is a next generation’ in delivery of curcumin compounds that no longer requires high doses of curcumin to reach sustainable levels of curcumin in the blood plasma. Each 400 mg capsule of Super Bio-Curcumin ® is equivalent to 2772 mg of a typical 95% curcumin extract. This product is actually BioCurcumax, which you can read about in my “Bioavailability Page.” Interesting. Hope it works! Update: it made my MM markers WORSE. Too bad!
Curcumin Powder
There are (still) two main U.S. sources for curcumin powder, as far as I know.
1. UPDATE November 26 2008: a blog reader (thank you!) informed me that my very first supplier of curcumin, a company called Supplemental Health Formulations, or SHF, has apparently disappeared. I will leave its name on my blog, in case the company reappears some day, but he’s right, the website is gone, so I am getting rid of the link. Too bad. My blog reader orders his curcumin powder from Pure Bulk: http://purebulk.com/curcumin-95-turmeric-pe-c-96.html. He says that Pure Bulk provides “good service and cheap shipping.” It’s 95%, so that is good. But it’s not the C3 Complex curcumin. This company does not ship to Italy.
2. You can buy the C3 Complex used in the MD Anderson clinical trial directly from Sabinsa, apparently. The cost is $ 73.00 per kilo, plus shipping costs. I took this information from an e-mail exchange I had in January of 2007 with Kavita Subramanian who at that time was the Senior Manager, International Business, for Sabinsa Corporation, 70 Ethel Road West, Unit 6, Piscataway, NJ 08854. Please contact her for more information (UPDATE: this info is not recent, so please take with a grain of salt). I should add that I have never ordered directly from Sabinsa U.S.A., but I have ordered from their Italian distributor, see below.
Curcumin brands and sources in Europe: capsules
U.K.: a couple of blog readers (thank you!) sent me their source for Doctor’s Best: http://tinyurl.com/yto9uh
Italy: capsules and powder can be ordered from the Italian distributor of Sabinsa, Sochim International. This is the Sochim homepage: http://www.sochim.it/ Their catalogue can be downloaded in English and in Italian. Sochim does not sell to private citizens, so you must order curcumin (capsules or powder) through your pharmacy or herbal store or whatnot. I have ordered both C3 Complex curcumin capsules and powder (both sans bioperine) from Sochim through my friendly pharmacist here in Florence. A slight drag, but it works.
UPDATE November 2008. A wonderful friendly helpful and knowledgeable pharmacist who will ship anywhere over Italy is Dr. Balducci, whose pharmacy is in Calenzano, near Florence. Here are the details: Farmacia Balducci, via Giuseppe Giusti, 15, Calenzano (FI) 50041, tel: 055 8824687 or 055 8879004. He has a galenic lab, too, which is very useful. Curcumin capsules with or without bioperine and curcumin powder are available here. It is the C3 Complex type, which he gets directly from Sochim.
There is also a French company called Anastore (the website may be viewed in four languages) that uses the C3 Complex curcumin: http://www.anastore.com/ I placed my first curcumin capsule order with Anastore, as a matter of fact. Prompt and free delivery. But it got to be a bit expensive because at the time they were making only a 400 mg capsule. Now I see that they make a 500 mg capsule. Much better. However, if I have done the math correctly (always double-check me, I am not good at all with numbers!), even the 3+1 offer would last only 15 days on eight grams a day. Not very long. Anastore is also my source for black cumin oil capsules, by the way.
UPDATE, October 2008: an Italian pharmaceutical company called “Steve Jones,” based in Prato, near Florence, has developed curcumin capsules, the C3 Complex kind, with bioperine and a bit of selenium. The product is called TAMIL, and it can be found at, or ordered from, any pharmacy in Italy. For more info, see: http://www.stevejones.it/index.php?id=136,525,0,0,1,0
Curcumin powder
I have ordered the C3 Complex powder from the Italian Sochim Int., see details above.
There is a Spanish distributor for Sabinsa, Goerlich Pharma Espana, S.L., but I don’t know if they sell curcumin to individuals, although I see that they do list the C3 Complex powder here: http://tinyurl.com/ytn2ng. The website also lists contact numbers, etc.
Sabinsa Europe is based in Germany, see contact information here: http://tinyurl.com/yq8m8t. Again, no idea if they sell to individuals. The only way to find out is to contact them directly.
I will make an effort to find other sources in Europe, which I fear won’t be easy until curcumin becomes a common household word. Of course, Sabinsa’s homepage lists their branches throughout the world. Easy.
Have I missed anything? Probably. As always, I welcome suggestions and comments. Thank you!
UPDATES (2007). A blog reader wrote: “I buy my curcumin powder (Turmeric Extract) from Tattva’s Herbs based in Seattle, WA. Their website is www.tattvasherbs.com. Phone: 877-828-8824. Their curcumin is Curcumin C3 Complex from Sabinsa. They also have it in capsules. A jar of 200 grams is $67.95. However, those in the healthfield can purchase it at wholesale price. I do not think it is so hard to get it at wholesale,though. A cancer clinic in Seattle gets its curcumin from this company.”
Another blog reader (from Germany) got in touch with Sabinsa Europe, and was told that one of their customers is a chemist (who makes curcumin capsules with the C3 Complex curcumin) in Koblenz, as follows: Schloss Apotheke, Schlossstr. 17, 56068 Koblenz, 0261/18439, 0261/12449; http://www.schloss-apotheke-koblenz.de He also discovered a website that sells the NOW curcumin: http://tinyurl.com/35cvpl
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C-reactive protein levels
September 17 2007 post (scroll down for most recent entries). Last week a multiple myeloma listserv member posted a ScienceDaily article that initially puzzled me. The article (http://tinyurl.com/2k3acf) begins: Scientists report that a protein best known as a common marker of inflammation plays a key role in the progression of human cancer. The research, published by Cell Press in the September issue of the journal Cancer Cell, implicates C-reactive protein (CRP) as a potential target for cancer treatment. Well, that didn’t seem like breaking news to me. One of my regular blood tests measures my serum levels of CRP, and I know that it’s a myeloma marker. But then I read the showstopper: These results provide strong evidence that CRP is not just a marker for MM but is a critical regulator of myeloma cell survival.
Not good.
Reading on, this protein protects myeloma cells from the effects of chemotherapy and also enhances their production of IL-6 (an evil cytokine that protects myeloma cells from dying). So CRP and IL-6 work together to keep myeloma cells alive, in a sort of vicious circle. Also not good.
As I was reading this article and then the study abstract (http://tinyurl.com/2xop56), a question popped into my mind: are there any natural ways to decrease our CRP levels? The answer is YES. However, since this is a complex topic, both to understand and to investigate, and since my research has led me a bit astray (all over the place, actually!) given the overwhelming amount of information, I chose to post some of what I found out by degrees.
Let’s start with the C-reactive protein. What is it? In essence, it’s a protein produced by the liver and released into the bloodstream when there is an ongoing inflammatory process in the body. It is a non-specific marker for inflammation: an elevated CRP level indicates inflammation but won’t tell us where exactly it is located. So we might have high CRP levels due to a simple cold, arthritis or some type of infection.
The above-mentioned abstract reports that Elevated levels of C-reactive protein (CRP) are present in many disease situations including malignancies and may contribute to the pathogenesis of cardiovascular disorders. I didn’t know that an elevated CRP is a indicator also of cardiovascular problems, hypertension and other types of cancer (prostate, hepatocellular, e.g.) until I did research for this blog piece. Indeed, one interesting item that I came across is that people at risk of developing heart trouble or a stroke may, strangely enough, have normal LDL cholesterol levels but a high CRP. Quite an important recent discovery! Anyway, I double-checked my own CRP levels, which have never been above 9 mg/L (that is the normal range). The problem with this test, at least in Italy, is that it doesn’t quantify CRP. It simply reports that I have less than 9 mg of this protein in my blood. I prefer to have precise figures, so this test does not satisfy me at all. Besides, I noticed that in 2005 I had .5 mg, so at one point it WAS an actual number. Puzzling.
So we go back to the question of how to reduce CRP levels by natural means. I will give one example before stopping for the day (I have to get ready for my classes tomorrow). I found a couple of recent studies showing that one way to reduce CRP levels may be to increase our daily fiber intake.
November 10 2007 post:
I recently read a study with a very long title, The anti-inflammatory flavones quercetin and kaempferol cause inhibition of inducible nitric oxide synthase, cyclooxygenase-2 and C-reactive protein, and down-regulation of the nuclear factor kappaB pathway in Chang Liver cells (!), published in the European Journal of Pharmacology in February of 2007. The abstract can be seen here: http://tinyurl.com/26yy5q I was able to read the full study thanks to a friend (grazie, Sherlock!). As usual, I would be more than happy to forward the study upon request.
First, what are Chang liver cells? The online Dictionary of Cell and Molecular Biology tells us that these liver cells are derived from non-malignant human tissue. Now, I don’t want to get involved in a detailed explanation concerning inducible nitric oxide synthase, or iNOS, which is beyond my purpose here, anyway (phew!!!). Let it suffice to say that iNOS is linked to inflammation, and anything that inhibits it is good news. We already know about COX-2 (see my Ellagic Acid and Natural COX-2 Inhibitors Pages for more info) and CRP, and of course the ubiquitous NF-kappaB. Ah yes, and kaempferol is a natural flavonoid found in tea, broccoli, grapefruit and other plant sources. On with the study, then.
On page 222 we read that C-reactive protein (CRP) is an acute phase protein produced by hepatocytes whose serum elevation is considered as indicator of chronic inflammation and whose interaction with endothelial cells may be the mechanistic link between CRP and atherosclerosis [ ]. It is known that IL-6 induces CRP through a mechanism involving NF-kappaB [ ], but no study has until now documented potential effects of flavonoids on CRP expression in liver cells. Hepatocytes, by the way, are liver cells (for the more scientifically-minded, epithelial cells found in the liver that, among other things, have the function of helping to detoxify our blood).
Both quercetin and kaempferol reduce iNOS and COX-2: The present study indicates that both flavones reduce iNOS protein level in activated Chang Liver cells and that kaempferol was a slightly more potent inhibitor at low concentrations. COX-2 protein level was also reduced [ ] And, most importantly for our purpose, i.e., identifying substances that reduce CRP levels naturally: Our data show that both quercetin and kaempferol significantly reduce CRP protein level in liver cells and that this inhibition is concentration-dependent [ ]. SIGNIFICANTLY REDUCE? Well, I have been putting quercetin powder in my curcumin/chocolate mixture for other reasons (see my Bioavailability page for more information), but I am very pleased to discover that it may also be reducing my CRP levels.
The study ends: In summary, the present study indicates that the modulation of iNOS, COX-2 and CRP by quercetin or kaempferol may contribute to the anti-inflammatory effects of these two structurally similar flavonoids in the liver, via mechanisms likely to involve blockade of NF-kappaB activation. Sounds good to me!
March 30 2012 post:
I wanted to highlight something that I learned this morning from a blog reader who sent me the link to a study (full text available online) showing that low levels of magnesium might increase our C-reactive protein (= CRP) levels. Ooooh, that’s not good at all! Many myeloma patients take magnesium for leg cramps and neuropathy…but now there’s yet another reason to take it. See: http://goo.gl/jrcph
Excerpt: Among the 70% of the population not taking supplements, magnesium intake below the RDA was significantly associated with a higher risk of having elevated CRP. The lower the magnesium intake, the higher was the likelihood of elevated CRP. ‘Nuff said.
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Reishi/Ganoderma lucidum
July 30 2009 post. I found a verrry interesting item while reading “Jaymun’s Journey” (see: http://tinyurl.com/l5te4c Thanks, Dave! Incidentally, I am so thankful and happy that Jaymun is home now, what a relief!), which then led me to the following abstract: http://tinyurl.com/klxuvf Wowiezeewie!
In September, I will ask Sherlock if she can get me the full study…in the meantime, we will have to be content with what can be gleaned from the abstract, such as this glorious titbit: Ganoderma lucidum extract has a profound activity against leukemia, lymphoma and multiple myeloma cells and may be a novel adjunctive therapy for the treatment of hematologic malignancies. Profound effect??? That sounds super…but what is this stuff?
Well, ganoderma lucidum is a mushroom species…a fungus that has been used in traditional Chinese medicine for more than 4,000 years, making it one of the oldest mushrooms known to have been used in medicine, as we can read in its write-up in Wikipedia: http://tinyurl.com/n5szkn Perhaps many of you will recognize, as I did!, the Japanese word for this mushroom: Reishi. Ah yes. It seems to be another one of those fix-all-and-more remedies…it is used to treat conditions as diverse as rheumatism, heart problems, asthma, fatigue, psoriasis, high blood pressure, HIV and…cancer. And more…
I urge you to have a look at the above Wikipedia link. The “History” section is absolutely fascinating. For instance, the oldest book in oriental herbal medicine (2,000 years old!) states the following: “The taste is bitter, its energy neutral, it has no toxicity. It cures the accumulation of pathogenic factors in the chest. It is good for the Qi of the head, including mental activities… Long term consumption will lighten the body; you will never become old. It lengthens years.” Uhm…never become OLD?!!! Words escape me at the moment…
In Chinese, by the way, it is called “lingzhi,” which means “herb of spiritual potency” and my personal favourite: “mushroom of immortality.”
Wikipedia also provides suggestions on how to cook this mushroom as well as a list of scientific studies backing its rather impressive anti-this and anti-that properties. Can you tell that I am excited? There are also heaps of studies on the mushroom of immortality in PubMed…I have already found a reliable source and will buy some of the, er, immortal extract, even though I don’t have the time now to go through any of these studies (but what I have read is enough to convince me to give it a whirl…)…
Update. September 9 2009 post. On July 30th, I posted about Reishi, or Ganoderma lucidum, and its murderous effect on leukemic, lymphoma and MM cell lines. At the time, I had been able to read only the abstract.
Soon thereafter, a blog reader (thank you!) kindly let me know that the full study is available online: http://tinyurl.com/ljsbh7. Slight problem: my online copy (I hope this doesn’t happen to everyone!) comes to an abrupt halt at the end of page 7, which means that the final Discussion points are missing, as are the references. Very peculiar. As usual, though, Sherlock (grazieee!) came to the rescue by sending me the complete study, so I was able to fill in the missing bits.
Let’s see. Since the full study (or rather, most of it!) is online, I won’t make but a few comments. Reishi was tested against the above-mentioned cell lines together with other five herbs with known anti-cancer activities (see above link, the Discussion part, page 7) and was found to be the most active of all. It was especially effective against the blood cancer cell lines.
The following excerpt is from page 8, my mysteriously “missing” online page: Taken together, our study is the first to examine the effects of G. lucidum extract on a large panel of hematologic cell lines. Our results show that G. lucidum extract has activity against leukemia, lymphoma and myeloma cells and may be a novel adjunctive therapy for the treatment of hematologic malignancies. Further research is planned to isolate the triterpenoid constituent of G. lucidum (ganoderic acid) and to examine its anti-cancer potential.
I bought a Reishi extract while in the U.S. this summer and plan to test it, on myself of course!, at some point this winter. Interesting times lie ahead…I hope!
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My fall 2010 protocol
See October 18 2010 post. Some blog readers have recently asked me what my current protocol is. So, even though I have no earth-shattering update concerning my daily protocol, I decided to publish a post about it today…One of my super-organized blog readers asked me a series of questions, so the easiest thing to do is to answer them one by one…
Question: What is your current curcumin “ritual” (i.e., do you divide it into doses? do you combine it with bioperine or any other supplements or foods to help bioavailability? do you take it in pill form or as a powder? do you take it before, after or during meals?).
Answer: For a long time now, I have been taking one big dose about an hour before dinner (=16 capsules just of curcumin…). I make an exception if we are having a curry or another Indian dish for dinner: in that case, since I always use heaps of organic turmeric, I take all my capsules with dinner, hoping to increase their bioavailability. What type of curcumin? Well, I take either Doctor’s Best, the 500 mg capsules (which do not contain any silicon dioxide), or NSI, the Vitacost brand (ditto). Both contain bioperine (black pepper extract). By the way, I have eliminated pepper from my diet (not red pepper, of course), just to be cautious…too much pepper could be too much of a good thing!
Question: Please specify your current schedule of other supplements (specifying the exact dosages, the forms in which you take them and the time of day — including whether before, after or during meals).
Answer: right before I take my curcumin capsules, I take 2 grams of fish oil and 1.5 grams of quercetin, all in capsule form (i.e., not caplets or pills or gummy bears). I make sure that the fish oil is molecularly distilled/purified…This is the easy protocol that I have been following this summer, but I should mention that I soon plan to add ashwagandha for three-month cycles. I am a big fan of “less is more,” so I plan to be very careful…
Question: Are there any supplements that you started and then stopped taking due to side effects or other reasons?
Answer: Yes. Details:
-Parthenolide, or PTL (feverfew extract). I will probably never take any more PTL, even though it attacks leukemic stem cells, which is obviously fantastic. You see, I recently found out (see my October 6 2010 post) that it induces cellular protective responses that likely function to reduce its overall cytotoxicity in leukemic cells. That is not good at all, but it also might explain why my PTL experiment (May 2009) was such a failure…
-BCM-95 or Biocurcumax. Sherlock and I tested BCM-95 in 2008, and our myeloma markers worsened…a lot! So, until I am 1000% sure that there is a truly fabulous (backed up by solid proof etc.) new curcumin on the market, I will stick with C3 Complex curcumin, which has been tested in various clinical trials. Case closed.
-Resveratrol. The jury is still out. Back in 2008, I took one of the two best brands available on the market, but my results ended up being only so-so: some markers slightly improved (monoclonal component, total IgG, e.g.), and some got slightly worse (total protein, red and white cell counts, blood viscosity, e.g.). All in all, no dramatic changes, though. I should make the point that I tested resveratrol in the summer. Well, I don’t test anything during the summer anymore. It simply gets too hot here, and, based on what I have been told, I am afraid that my blood tests would not be entirely reliable, since the test tubes sit around in a hot lab for a certain amount of time…blablabla… Anyway, that is a reason I might try resveratrol again…
–Ganoderma lucidum or Reishi (the New Chapter brand). I began testing it last spring but had to stop taking it when we left for the UK (=so I still don’t know if it did any good or not…). Reason for stopping: I just couldn’t travel with too many supplements. Now that I am over my bout with bronchitis, though, I plan to test it again, taking the recommended daily dosage, no more. In order to avoid taking so many capsules at once, however, I will take it in the early afternoon whenever possible. I have a huge amount of faith in the anti-myeloma effects of Ganoderma lucidum, so it had better not let me down!
Side effects: no, I have never taken anything that has given me any trouble…not even when my experiments ended up being complete failures.
SUMMARY: Just before dinner (with the above-noted exception), every day, I take 8 grams of curcumin, 2 grams of fish oil and 1.5 grams of quercetin. To that I am soon going to add almost 1 gram of ashwagandha (also known as Indian ginseng) for three months. That is my basic protocol, to which I will add anything I plan to test for a couple of months or so. Next test: G. lucidum (=Reishi). Okay, I think I have answered all of my blog readers’ questions now. If I haven’t, though, or if you have any more, please feel free to ask…
Oh wait, another question that I frequently get asked is: “have you ever had any chemotherapy?” Well, this seems like a really good time to declare publicly that I have never had any chemotherapy or any other conventional treatments (=nothing stronger than antibiotics!).
I also do not have any CRAB symptoms and do not take bisphosphonates. Hmmm, what else? Ah yes, I do not take any multivitamins or, indeed, any individual vitamins, with the exception of vitamin D, which, as I have written countless times, I believe should be on the list of the routine testing/screening of all MGUS, SMM and MM patients (see my Page on myeloma and vitamin D). Every single one of us should have our vitamin D levels monitored. Indeed, all cancer patients should probably have their vitamin D levels tested!
That’s it, folks!
Afterthought: I have also started drinking a cup of green tea almost every afternoon (if I have the time, that is)…
6 Comments
- Hello Margaret,I understand that you accept the idea of your friend, Sherlock : Atomic Bomb before the dinner. And I can also understand that you want to take Fish Oil together with Curcumin for better absorption and digestion. Once I read about it regarding to the olive oil.But why are you taking Quercetin with them? I mean, why not any other time of the day, why together?Isn’t it bad for the stomach and body? Is it really better that way for the absorption?I was always thinking of dividing natural supplements should be better instead of taking all of them once and together. It seemed more logical to me…?I will be very glad if you answer me.
- MargaretWhen I started taking Vit D 50,000 iu 1 a week for 12 weeks as recommeneded by a CAM dcotor. My Ca shot from 2.58 to 2.69 when I re-tested at the 7 week period.
My myeloma doctor (separate from CAM) told me to IMMEDIATELY stop taking Vit D, and my Ca evels returned to 2.65 withint about 6 weeks, currently.
My Vit D levels were normal before CAM put me on Vit D - Hallo Magaret,Wat kost de curcumine in Italie?
Misschien kan mijn dochter dan beter wat meenemen
vanuit daar. - Hello Margaret,I was diagnosed in June 2012 with Asymptomatic Myeloma and upon discovering your blog began taking Curcumin. I have been on a 6 grams/ daily regimen for about 5 months and have recently increased the daily dose to 7 grams daily using your once a day bomb theory along with 1.5 grams of quercetin and Cod Liver Oil. My numbers remain stable and I have none of the CRAB symtoms. I eat a healthy diet what I would describe as a Mediterranean diet. Are you still following the same Curcumin protocol? Also, I would be interested in knowing if you consume any alcool?
- Thank you, Margaret, for being here…for all of us!!! Questions; why the Quercetin and do you have any advice/thoughts on taking IP6 and Inositol.? Doing fish oil and almost up to 8 grams VitaBreeze Pure Turmeric Curcumin C3 Complex with BioPerine 750mg extra Strength. Thanks in advance for ANY advice.
- Hi Margaret,After four years of totally drug-free SMM, I’ve now been advised that I’ll need to start treatment within the next few months, due to bone lesions appearing for the first time and fairly significant increases in my M proteins although I continue to feel great.As an avid follower of your blog since I was diagnosed, I re-read your Fall 2010 protocol regarding ashwangandha and would like to know if you still recommend trying this? If so, any dosage recommendations.I’m hoping to buy enough time to get down to our cottage this summer for a couple of months before beginning treatment or,ideally,stave off drug treatment even longer. I am inclined to add ashwangandha to my neutraceutical protocol.Also, search as I might, I can’t seem to locate your current protocol. Can you kindly direct me to it?Would really appreciate hearing from you!Best Regards,Yolande
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Future myeloma treatments (February 2011)
February 9 2011 post. A MMA list member recently posted an item from the CancerCare bulletin titled “the latest in multiple myeloma research,” which lists a series of different conventional drugs and their anti-myeloma activity. I went down the list, did a wee bit of research and made a discovery…not a very startling one, come to think of it…but anyway, here goes:
- Monoclonal antibodies. Often compared to guided missiles, monoclonal antibodies zero in on cancer cells whose surfaces have a “target molecule.” For example, the combination of lenalidomide with a monoclonal antibody called elotuzumab holds promise in treating multiple myeloma that comes back after traditional treatments.
- Growth blockers. These drugs are designed to block the growth of myeloma cells by depriving them of substances they need, such as vascular endothelial growth factor (VEGF). When tumor cells spread through the body, they release VEGF to create new blood vessels. These blood vessels supply oxygen, minerals, and other nutrients to feed the tumor.
- Proteasome inhibitors. Bortezomib was the first in its class of proteasome inhibitors. Another promising drug, called carfilzomib, appears to work the same way as bortezomib.
- Immunomodulators. A new form of the drug thalidomide is showing promise in people whose multiple myeloma has returned after previous treatment. Called pomalidomide (Actimid), this medication stops the growth of blood vessels that feed tumors. It also boosts the immune system and may kill cancer cells directly.
- Histone deacetylase (HDAC) inhibitors. This class of drugs works by killing cancer cells or stopping their growth. Two HDAC inhibitors, vorinostat (Zolinza) and panobinostat, have been combined with bortezomib. This combination has been shown to be effective in many people whose tumors resist treatment with bortezomib alone.
- Akt inhibitors. These drugs aim to disrupt cancer cell membranes and block the actions of proteins involved in cancer growth. An Akt inhibitor called perifosine holds promise as a treatment for multiple myeloma, when combined with bortezomib.
- Heat shock protein-90 (Hsp90) inhibitors. Heat shock proteins are key players in a number of processes that cancer cells use to survive and grow. Multiple myeloma cells contain more of a heat shock protein, called Hsp90, than normal cells. Two drugs—alvespimycin and tanespimycin—block the actions of Hsp90. Research suggests that combining these drugs with bortezomib may be more effective than treatment with bortezomib alone.
- mTOR inhibitors. This class of drugs blocks a mechanism called the mammalian target of rapamycin (mTOR) pathway, which promotes tumor growth. Preliminary research suggests that combining lenalidomide with an mTOR inhibitor called everolimus (Afinitor) may stall the growth of multiple myeloma.
- Cyclin-dependent kinase (CDK) inhibitors. CDK inhibitors, such as the drug flavopiridol, block proteins that promote the growth of multiple myeloma cells.
- Telomerase inhibitors. One drug, known as imetelstat, blocks an important enzyme found to be active in myeloma cells. This enzyme allows cancer cells to resist chemotherapy.
- RANK ligand inhibitors. This new class of drugs works differently from other types of drugs that treat bone complications. They are designed to block a factor in bone development known as RANK ligand. RANK ligand stimulates cells that break bone down. By blocking RANK ligand, RANK ligand inhibitors may increase bone density and strength. Denosumab (Xgeva) is being tested in people with multiple myeloma for the treatment of bone complications. The FDA has recently approved denosumab to help prevent bone fractures and bone pain in non-myeloma patients whose cancer has spread (metastasized) and damaged the bone.
Now, with the exception of item #1 (=monoclonal antibodies), the myeloma targets mentioned in the remaining 10 items on this list are inhibited, all of them!!!!!, by something that many of us already take….a non-toxic something that inhibits VEGF, HDAC, mTOR, Akt, blablabla…all the way down to RANKL, the final item. Can you guess what the “something” might be?
And there is more.
Just this morning I read a newly published “Blood” abstract (yes, I am finally able to read an abstract without falling asleep… ): http://goo.gl/MMFMp It mentions a new myeloma target (I think I’ve seen this one before, but I don’t have the energy to check right now…) called “glycogen synthetase kinase-3 beta” (GSK3beta).
Well, the above-mentioned, not-so-mysterious-after-all substance happens to inhibit GSK3beta, too. Have you guessed yet?
This is bloody ridiculous. And frustrating. I mean, how much more proof will we need to provide before our official myeloma organizations begin taking notice of non-toxic, anti-myeloma substances…substances that can target myeloma via multiple pathways, which is the only way a cure for myeloma will ever be found???
Let me give you this image: if you hit a tumor with only one missile, its chances of surviving the strike are high, very high indeed. But if you hit the tumor in different areas and with many different types of missiles, you stand a good chance of annihilating it…
It all boils down to plain common sense…
So I ask my question once again: how much more proof do we need in order for some money to be poured into non-toxic research? I am sick and tired of hearing about denosumab (see my posts on this topic) and conventional treatments that are really, or potentially, toxic…really sick and tired…
Basta, I say!!!
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Myeloma and curcumin links:
Curcumin And Multiple Myeloma: Preclinical And Early Clinical Studies Are Promising; Still Awaiting More Clinical Evidence
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MOSTLY PERSONAL BLOGS OF MYELOMA PATIENTS OR THEIR CAREGIVERS
Source of information on above blogs and links:-
DON'S MYELOMA DIARY
ALSO:
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I am Marjo Go and live in Holland. nearly 6 years ago I got the diagnose Multiply myoloma but after a while they told me it is mgus (1.9. I am at the university hospital (heamatology)in Amsterdam. My mother had a test at her 70th for osteoporose and they told her that bones where very tranparant. So four years ago I ask to have a DEXA scan they told me that it was ok. 2 months ago a asked for another dexa scan and now i am diagnosed osteoporose and they gave me pills fosamax and calcium and vit. D2.with a substance aspartaam. I do not like aspertaam so I looked for an other possibility bio calcium and D3 and K1. Today it is the first time I came on your site. It is not easy to understand all in one time reading. But I have a question (probably in future more) who can help me with curcumin powder how do I know how much is good for me. and on the of the page stands a lot of myeloma’s (L or smm etc) How will I get to know what I have?? what questions could I ask my specialist to know which one? I hope to hear something from you. Thank you for reading this.
with kind regards and love,
marjo go (from holland)
I will appreciate your reply
Sachin
spending 3,5 euro a day is not so expensive…
Organic India Turmeric Formula: each capsule contains
370mg organic turmeric rhizome
80mg turmeric extract 95% curcummoids
50mg organic ginger rhizome
Does it mean that there is 450mg curcumin per cap? I am totally confused! I’d be very happy and grateful to hear from you. Thanks in advance!
Yes, nice to be stable but I wonder if a slightly higher dosage might actually roll back those plasma cells through apoptosis. I’m on 11gr daily, more than Margaret’s absolute limit of 8gr, but I reason that I’m almost certainly a good deal heavier (bigger) than her so it’s probably much the same dosage, gram for kilo weight. Maybe I’ll try 15 grams for a while – there have been no studies I know of setting any upper limit, just one concluding 10gm was ok.
1 Feb 12 at 11:26 am
I’ll update soonest…
I have read about what you have done to keep your SMM in check and getting better with Curcumin protocol. My question relates to using both your protocol and TABs protocol. Would this be too disruptive to my system? I have just been identified SMM and am 74. I have read that my statistics donot look good for survival rate. I am determined to fight and not just “wait and see”. I need all the help I can get to arrest this disease and gain some time for life. I would appreciate any help you could give me.
Thanks, Deanna
It is a very effective anti-inflammatory. My pains have been reduced significantly and my hemoglobin has been stable. I decided to take it because they state that in this liquid form the absorptio of curcumin is higher than in its original form.
Has anybody elese tried this product and would like to share their experience here?