It didn’t work!

Right after I had published my anniversary post yesterday, I went to check our snail-mail mailbox, and my test results had arrived. Gulp! These were the results of my two months on eight grams of Biocurcumax, allegedly a more bioavailable form of curcumin, ordered directly from the Arjuna company in India and put into capsule form by fabulous Dr. Balducci in Calenzano.
Terrible. A big flop. As I looked through my February 26 results, I began feeling like Piccolo in this photo (actually, he’s yawning, it just LOOKS scary, doesn’t it? Hehe). Let’s see…where shall I begin? Going down the list, comparing the February results to my so-so early January ones:
First, the good news (January results are listed first).
  • Hemoglobin went up a bit: from 12.7 to 13.6 g/dL.
  • So did my hematocrit, from 37.4 to 40.0.
  • My blood viscosity and general inflammation marker (VES, in Italian) went from 50 mm/h to 42, the lowest it has been in years (I checked as far back as 2004). 
  • Ferritin: up slightly, from 7 to 13 ng/mL. Still under the normal range, though (sigh).
  • CRP is still under 9 mg/L.
  • Bence-Jones is negative, as it has always been. In this case, for non-myeloma folks, negative is good.
  • IgA and IgM are the same as they were (barely there, but holding on!).
  • B2M: stable. It went from 1.9 to 2.0, still within the normal range.
  • Albumin went up a bit, from 48.2 to 49.0 %. So did my beta globulin, from 6.9 to 7.4 %.
  • Liver markers are all fine. To be expected, because of my intake of curcumin. 
  • DHEA-S (new test) is right smack in the middle of the normal range.
Now for the bad bits, again going down the list.
  • Total IgG went from 31.90 to 35.30 g/L. It’s never been that high. Please remember, though, that I started on antibiotics the day after the tests, so that could have something to do with this bothersome increase.
  • My serum iron took a bit of a plunge, from 81 to 57 micrograms/dL, which means that I am now a bit below the normal range.  I guess I will be seeing heaps of iron-rich molasses in my near future. 
  • Total protein: the highest it has ever been. It went from 8.7 to 9.3 g/dL. 
  • The news gets "better": my m-spike went from 2.17 to 2.45. The highest it’s been since I discovered this test (less than a year, so not long).
  • My monoclonal component also took a wrong turn (I’m going to give it a map before I take my next set of tests!), going from 25.0 to 26.4 %.
  • For the first time EVER, my white cell count has dropped below the normal range. That doesn’t make much sense, since, as I mentioned, I must have been fighting an infection at the time. Puzzling.

Two of my "new" tests were a bit “off,” as follows.

  • Alkaline phosphatase, which is below the normal range. This could be a symptom of a bunch of things (still have to look into the matter), such as magnesium deficiency and hypothyroidism. But, from what I have read so far, better to have a low than high result. Phew.
  • Creatinine clearance, which I have never had done before, is right smack on the high end of the normal range: 140 mL/min. That could mean a million things, including hypothyroidism (hmmm, there it pops up again!), so I will have it checked out. But my serum creatinine is fine, no change from last tests (0.7). I will have to sort this out.
The story hasn’t ended. Sherlock also took a bit of a thwack from our two months on Biocurcumax. She authorized me to post a few numbers, as follows:
Good news.
  • Her blood viscosity dropped a few more points, from 44 to 40 (but in the past it’s been as high as 98!). She told me this is the lowest it’s been in years.
  • B2M went from 1.9 to 1.7. Good.
  • CRP is less than 1 mg/L. WOWIE. Excellent, Sherlock!
  • Her serum iron level went up, and is now well within the normal range. Go figure.
Bad stuff.
  • Her total protein went up, from 8.4 to 9.0. She has had higher results, though, in her pre-curcumin past.
  • Total IgG went from 28.5 to 30.0, not a huge jump.
  • Her IgM, which is higher than mine, dropped a bit, from 0.23 to 0.19.
  • M-spike went from 2.24 to 2.5. I see that in her pre-curcumin era it was higher, at times.
  • Monoclonal component jumped in her case, too: from 26.7 to 27.8. 
Nothing else really sticks out to me. Sherlock, if you would like to add something I missed, please go right ahead.

My conclusions. Biocurcumax may well work for other ailments, but it would appear not to have worked for yours truly and Sherlock, respectively a U.S. citizen and an Italian (our DNA is VERY different, I mean).

So…hasta la vista, Biocurcumax! Too bad. Life can be like a rather wobbly path through the woods at times (I took this photo in Acadia, Maine, in 2006 ).

Well, at least I won’t have any more rosacea flare-ups. There is always (?) a bright side…  

Happy blog anniversary!

Well, today marks the one-year anniversary of my entry into the blogging world. Has one entire year really gone by since my first post? Amazing!
In my wildest dreams I never thought I would come to have such a consistent, wonderful and loyal readership (ever-growing, too!)…on the contrary, in the beginning, I feared that my blog would encounter a lot of opposition. Well, I am happy to say that my fears were ill-founded. 
So let me take this opportunity to thank each and every one of my blog readers for your kind comments, helpful advice and for pointing me in the direction of some of the best research I have done. Without you, without this blog, I would never have discovered the vast majority of these anti-myeloma substances.
My first big "thank you!" goes to Beth for urging me to create a blog. Then: to Sherlock for joining me in my experiments (and for coming up with brilliant new experiment ideas; non per nulla ti chiamo Sherlock!) and for being such a good friend to me in real life; to Roberto, Don Sunshine Sweet Pea, Wally, Cathy, Paul, Sue, Linda, old Bill, LPC, Marcelo, all my Italian blog readers (Carla etc.), my two Lisas and Marys…oh, dear, the list goes on and on. Well, you know who you are!  Last but not least, thank you, Stefano, for being my best friend, for keeping my computer in working order, and, most importantly, for getting me through all the bad times (TAT! You know what that means). But this is going to be a long post, so let’s get going!
I thought it fitting that I celebrate my anniversary by reading a study that has been in my “read” file for quite a while, now. Published in December of 2006, it was co-authored by Prof. Bharat Aggarwal, who gave me a little push in the right direction by encouraging me to try curcumin (January 2006) and has been helpful and supportive ever since. I will be forever grateful to him. Even though there is no way I could ever pay him back, today’s discussion is my itsy bitsy tribute to this wonderful researcher, whom I hope to meet in person someday.

The study (abstract:, published in the “Journal of the Society for Integrative Oncology,” is titled: “From ancient medicine to modern medicine: Ayurvedic concepts of health and their role in inflammation and cancer.” 

Something I have read over and over again is mentioned in the abstract and discussed more in depth in the first part of the full study, which, by the way, Sherlock sent to me (eh, come sempre, grazie!): “In spite of the billions of dollars spent on cancer research and the availability of the best health care in the world, the reason for such a high incidence of cancer in the United States is unclear. Lifestyle has been named as one of the major contributors to the incidence of cancer. The higher incidence of cancer among immigrants from the Eastern world to the Western world further emphasizes the role of lifestyle.” I have read stories about populations where the incidence of cancer and other ailments is very low; but when members of these communities immigrate to the Western world, they begin developing cancer (etc.). This doesn’t sound like mere coincidence to me.

The study reminds us that the understanding of cancer at the molecular base is still very limited. That means that matters such as cancer prevention and treatment are “still lagging behind.” Good point!
Ayurveda, meaning “science of long life,” “is at least a 5,000-year-old system of Indian medicine (1500–1000 BC) designed to promote good health and longevity rather than to fight disease.” It treats the body AND the mind and spirit: “most diseases connected with the psychophysiologic and pathologic changes in the body are caused by imbalance in three different dosha (ie, vata, pitta, and kapha). The fundamental aim of ayurvedic therapy is to restore the balance between these three major body systems. Any imbalance can lead to inflammation.”
Interesting to note that the ancient concept of inflammation corresponds to the modern one: “redness, heat, loss of function, and swelling.”

Health is “the balanced coordination of body, mind and consciousness.” I have always been convinced that our mental state has a lot to do with how well we respond to treatments of any kind. My mother was told by a friend of hers, a nurse who worked in a U.S. oncology unit, that she could tell which cancer patients would do well just by looking at them. She was always right, apparently.

Ayurveda and cancer. “According to ayurveda, cancer results from lifestyle errors, such as unhealthy foods, poor hygiene, or poor behavior, or from physical trauma, all leading to imbalances of vata, pitta, and kapha, resulting in injury to the inner layer of the dermis (rohini, the sixth layer of the skin) and the formation of abnormal branches of blood vessels.” This part is very detailed and interesting, but too long to post about here. I would be glad, though, to forward the full study to anyone who requests it.
Treatment of cancer. There are three approaches in Ayurveda: health maintenance, restoration to normal, spiritual approach and disease cure. The techniques were (are!) very modern: “The principles of patient safety were foremost, including meticulous aseptic techniques used for surgery (eg, careful boiling of instruments, cleaning of hands). Treatment involves the surgical removal of tumor, herbal remedies, dietary modification, and spiritual treatment (eg, detoxification, rejuvenation, prayers, music therapy, aromatherapy, gem therapy, sound therapy, stress relief, meditation, yoga, and astrology).” Diet and exercise (yoga, e.g.) were also considered to be important, and meditation, which I practise in my own fashion (having never been taught how to do it properly), “leads to emotional and stress release and detoxification of the cellular and tissue memories.”
In the 7th century, “surgery was considered one of the best methods of treatment for arbuda.” Arbuda is “definite malignancy.” Herbal treatments against cancer “were beneficial only in the beginning stage," but that also depended on the type of tumour involved. The surgical removal of tumours is described in detail…I must say, it’s really incredible to read about such careful sterile practises being used so many centuries ago. I was surprised and very impressed.
The review draws similarities between ancient Ayurvedic and modern Western cancer treatments. Although the different molecular targets “were not known 5,000 years ago, the components of herbs used at that time now appear to target these molecules.” Aha!

The review provides a Table that couples the modern targets of cancer treatment (such as NF-kappa B and COX-2) with ancient herbal remedies. Truly extraordinary. I must have a closer look at this list of herbs as soon as possible. Curcuma longa, of course, is everywhere.  The researchers state that the “Development of new synergistic anticancer agents based on these herbs would be beneficial for modern treatment modalities.” Indeed. “The use of Vinca rosea in the treatment of cancer is very well described in ayurveda,” and the modern chemotherapy drug vincristine derives from the plant Vinca rosea, or periwinkle. Just one example. 

Differences between modern science and Ayurveda: “Although modern science believes in using a single chemical entity for a particular cancer (eg, paclitaxel, vincristine, etoposide), ayurvedic treatment involves the use of whole plant extracts. It is possible that enhanced toxic effects associated with modern medicine are due to a lack of other components of the plant. Ayurveda usually recommends the use of several plant extracts in combination, which is somewhat similar to the combination of various chemical entities that are currently used for the treatment of cancer.” How about that?
Cancer treatment side effects. The review contains advice on how to “alleviate some of the common side effects associated with modern medical treatment of cancer;” even stress and depression, and how to diminish cancer cachexia: “the ayurvedic regimen rejuvenates the body tissues, tones up the body systems, and acts as a tonic to the body against cancer cachexia.” It also lists herbs that can protect us from the harmful effects of radiation. I already knew about curcumin, but not about ginger, e.g.

Relevance of anecdotes. “Treatment according to ayurveda is very individualized, thereby making it difficult to conduct a large population based clinical study. Thus, not many randomized, controlled, and double-blind clinical trials are available. Many anecdotal and case reports are available that show the efficacy of the herbs and the treatments used. The individualized therapies are sometimes poorly documented, unable to be accepted in the standardized Western field.”

Indeed, this is so true, and it illustrates the sort of opposition I have run into with my own cancer treatment, for instance at the recent conference in Calenzano, where I had a bit of a discussion with the cancer specialist sitting next to me. Will these close-minded attitudes ever change? I hope so. Blog reader Old Bill left me a good quote recently: “What’s wrong with an anecdote if it’s true?” (Beata Bishop). Exactly. And, even more to the point: what’s wrong with hundreds of anecdotes?

I would like to end with a long but significant quote taken from the Conclusion: “Ayurvedic treatments are still followed by 75 to 80% of the rural population of India. As much as 70% of the Indian population is vegetarian, and this may also contribute to the lower incidence of cancer. It also, however, raises several questions about current treatment. Although current treatment tends to be highly focused at the molecular level, it is highly unfocused at the whole organism level, making it reductionist. Ayurvedic treatment of cancer is a holistic approach and is currently preferred. The new wave of ‘‘system biology’’ and ‘‘genome revolution’’ is expected to provide a holistic approach to the treatment of cancer. In spite of it, this approach tends to ignore the relationship between mind, body, and spirit. It is our hope that ayurveda can help fill this gap.”
That is my hope, too.

Unlikely friends…

A myeloma list friend (thank you! ) recently sent me a heartwarming, REAL story about an orphaned baby hippo that was adopted by a 130-year-old tortoise (see photo). This amazing adoption occurred more than three years ago, in December of 2004, but I hadn’t heard about it.

Anyway, you can read the full story here (and check out the photos, soooo adorable!):

We could learn so much from animals…

Happy genes

Well, after signing an online petition against the annual slaughter of Canadian baby harp seals (hundreds of thousands will be clubbed to death this year so that thoughtless silly people can wear their fur…) and writing, yesterday, about fear and cancer diagnoses, I thought it was time to open a…happier chapter. First though, I would like to urge you to go on the PETA website and sign that baby seal petition. It will take only a few seconds and might help STOP this appallingly cruel massacre:

Thank you.

Okay, now for the "happy" chapter. Why are some people happier than others? Well, it seems that at least 50% of our happiness has genetic roots. A recently published University of Edinburgh study looked at survey data pertaining to 973 pairs of adult twins. Identical twins had more similarities than the non-identical twins (gee, that’s a surprise! ), even in terms of how happy they were.
According to the March 6 Science Daily article (see:, “Psychologists at the University of Edinburgh working with researchers at Queensland Institute for Medical Research in Australia found that happiness is partly determined by personality traits and that both personality and happiness are largely hereditary.” Personality and happiness share some of the same genes. Interesting.
The study goes on: “Using a framework which psychologists use to rate personalities, called the Five-Factor Model, the researchers found that people who do not excessively worry, and who are sociable and conscientious tend to be happier. They suggested that this personality mix can act as a buffer when bad things happen […]"
Intriguing! But what if you are sociable BUT worry a lot? Hmmm. Well, anyway, another fascinating titbit is that people who are predisposed to happiness are apparently able to count on an extra "supply" of happiness when the going gets tough. So they deal with problems and whatnot better than those who lack the "happy" gene. Let’s keep in mind, of course, that there is still a 50% component that is subject to external factors such as health, relationships, jobs.
Since reading this article, I have been pondering about the things, even little things, that make me smile in life. There are many. If I were to participate in a happiness survey right now, I am quite sure my result would show that I am quite if not very happy. I have a happy marriage and a good sense of humour, I live in a wonderful place, I really like my teaching job (mainly thanks to my funny students), I have a great supportive family, good friends, and let’s not forget my uproarious and loving cats. Last but not least, Stefano and I are going to go to the UK in late April to see puffins in their natural habitat and visit Northumberland for 10 days. My dream vacation! How could I not be happy? 
Oh, ok, almost forgot: I have an incurable cancer. Aaah, just a minor glitch! 


As I have mentioned on previous occasions, I subscribe to the Cancer Compass newsletter where I frequently come across items of interest. I read one such item yesterday, titled “A patient’s perception of peril can cloud treatment decisions.” It discusses the feelings surrounding a cancer diagnosis, feelings such as fear that can sometimes lead us to make mistakes.

An excerpt (you can read the full text here: often, a patient’s perception of peril – whether before a screening test or upon a definitive diagnosis – exceeds the genuine risk and can cloud treatment decisions. The fear is a reflection, in many respects, of what science has wrought in recent decades: More cancers than ever are being diagnosed, and they’re being found earlier and earlier. Tumors that would have gone unnoticed and untreated in an earlier era are now identified and addressed, even when the benefits aren’t fully clear.

"We’ve exaggerated the efficacy of our treatment and prevention at the same time we’ve spread fear of cancer," said Dr. Robert A. Aronowitz of the University of Pennsylvania, who has studied the history of cancer extensively. "And it’s led to a lot of individual and policy level mistakes.”

The benefits aren’t fully clear?…We’ve exaggerated the efficacy of our treatment and prevention? Whoa!!!

This reminded me of when my former haematologist was pushing me to begin Velcade in the fall of 2005, and had introduced the possibility of chemotherapy even earlier that year. He told me that we shouldn’t wait until I began having symptoms (bone lesions and whatnot). Well, today I ask myself: where would I be now if I had been overcome by fear and followed his advice? I don’t mean to sound judgmental of those who choose conventional treatments, oh no, quite the opposite!…what I mean is that sometimes, or even frequently, as Dr. Aronowitz admits, our doctors tend to scare us…perhaps (!) unnecessarily…into making hasty decisions. Remember the case of Michael Gearin-Tosh? (see the link here on the right, under "MM blogs/sites.")

Cancer is still seen by many as a death sentence, so it’s natural to be scared. I have been scared, too. And, heck, I still have some fear on an occasional basis, in spite of my incurable () optimism. I have already written a bit about my reaction to finding out that I had benign MGUS (I burst into tears in my car) and, many years later, myeloma (a few more tears, soon replaced by determination). But, luckily for me, I was, still am, in an early stage, and had time to think and do research. I sought other medical opinions (Dr. Robert Kyle was one of the myeloma specialists who confirmed I was right to wait, by the way). If you are diagnosed with MGUS, SMM or MM (at any stage, but an early stage in particular), I urge you to read Michael Gearin-Tosh’s book, "Living Proof." He writes, if you are diagnosed with cancer, you need time to think. So true. Thinking is not enough, though. There are other things you can do. As follows.
We (patients) can ease the fear of cancer, according to the Cancer Compass article, by being informed. Find out everything that you possibly can about your type of cancer. A recent study found that men’s concerns about prostate cancer eased – once they received information via a sophisticated Internet program. Bingo! 
Information, say cancer specialists, “is not only power. It can also forge hope. That’s exactly what happened when parents whose children were gravely ill with cancer received a more detailed description of how the disease might progress. The families getting the most information reported the greatest degree of hope, even in the face of a grim prognosis. And, even though such matters are not mentioned in this article (quelle surprise!), don’t forget to research, and speak to your healthcare provider about, diet and supplements.
When I was first diagnosed with myeloma, some of Stefano’s relatives became concerned that I was doing so much research online. "It is better for her not to know," they whispered to him. Well, today I feel vindicated: it is better to KNOW.
The Cancer Compass article mentions something that I have experienced, too. That I still experience, in fact! Whenever I get an unfamiliar or odd ache or pain, the first thing that pops into my mind is “oh bother, is this the myeloma, is this a bone lesion?” (Okay, so I use much stronger words than "bother"! ). Apparently, that’s a normal reaction (phew). So what do I do about it? Well, I simply tell myself not to be silly, shrug my shoulders and forget about it. The pain goes away.

I’d like to end today’s post with the following excerpt from "Living Proof": Even if you find it difficult to go so far in your own thinking, active involvement in your therapy may lead to your consciousness and subconscious to trigger complex biological creativities, a presence in you of ‘decisions of endless creation’ that may help to fight a terrible disease.

Thank you, Michael.

Gossypol analogue

Remember my post on gossypin? Okay, well, today’s post has nothing at all to do with gossypin. (Hehe, sorry, couldn’t resist. ) But really, the word "gossypin" sounds like the substance I am about to discuss: "gossypol," which I thought was a derivative of gossypin, at first. But no, gossypin is a flavone extracted from the tropical rose mallow plant, whereas today’s protagonist, gossypol, is a polyphenol derived from the cotton plant. So, different compounds.
Gossypol, I read online, has been used for centuries against malaria and as a male contraceptive in China. The cotton plant produces gossypol to protect itself from the damage caused by pesky insects. It’s a toxin that inhibits the reproduction of insects and also of humans (mammals in general). Anyway, what I found interesting is that gossypol is now being studied for its anticancer properties. An all-too-familiar story!
The new edition of “Blood” (March 15 2008) has a study on a gossypol semi-synthetic analogue called "apogossypol" that apparently is more effective than gossypol against Bcl-2, an anti-apoptotic gene that almost certainly has a lot to do with the chemoresistance of myeloma cells. Brief aside: you can do a search here for Bcl-2, just scroll to the bottom of my Blogroll until you reach a "search" box; see in particular my August 27 2007 post titled “Survivin MM with curcumin.”
Sherlock (grazie!) sent me the full study; you can view the abstract here: The study begins with a look at the above-mentioned Bcl-2, which is overexpressed in many cancers and leukaemias and protects tumours and leukemic cells from kicking the bucket when exposed to chemotherapy, hormonal treatment or radiation. Bcl-2 has thus become a target for cancer treatment, especially where B-cell malignancies are concerned (non-Hodgkin lymphoma and CLL, in particular).
The study tells us that another gossypol analogue, AT-101, is being tested right now in Phase 1 and 2 clinical trials on patients with solid tumours, lymphomas and leukaemia. I checked to see what kind of clinical trials were testing gossypol, and there are twelve trials for different kinds of cancer ranging from brain to prostate cancer. And, of course, B-malignancies. The main problem of AT-101, though, appears to be the GI toxicity caused by its bothersome aldehydes; we don’t need to know what these are exactly, just that their removal eliminates any GI problems. The "Blood" study researchers did just that: they removed the aldehydes, thus creating apogossypol, which shows “superior blood concentrations over time […] compared with gossypol, due to slower clearance of the compound.”
Toxicity: the researchers tested the toxicity of gossypol and its analogue on normal female Balb/c mice (okay, I confess that I still shudder with horror when I think of all the suffering lab animals around the world…and to tell the truth, if someone told me, “it’s either you or that mouse,” it would be a tough choice for me to make, as silly as that probably sounds. If the choice were between me or a cat, well, you can imagine what my answer would be…now why can’t experiments be done on those maddening tiger mosquitoes??? ).
Back to the study. Well, apogossypol turned out to be less toxic than its parent compound. If you want to read more details, I will be happy to forward the study to you. Other results: unlike apogossypol, gossypol was toxic to the liver, caused GI problems and made the mice lose weight. Neither substance caused any kidney toxicity or heart trouble. Ok, I’ve read enough about the poor dear lab mice. Basta!
In vitro findings (phew, much better: I don’t have as much sympathy for cancer cells…). The researchers used “cultured B-cell lymphoma and CLL leukemia cells.” In both cell cultures, apogossypol was more lethal than gossypol.
The gist of the study: “The preclinical data presented here show superior efficacy and markedly reduced toxicity of apogossypol compared with gossypol, and thus indicate that further development of apogossypol for B-cell malignancies is warranted.” Well, interesting study. Another piece of the puzzle, perhaps. Only time will tell…

The history of multiple myeloma

As I was looking through the new edition of “Blood” yesterday, I came across an interesting historical overview of multiple myeloma by Dr. Robert Kyle (with whom I have spoken by phone and been in touch with occasionally since 2005: an extremely nice, kind, reassuring doctor) and Dr. Vincent Rajkumar, Mayo Clinic in Rochester.
The full text is available online:, so I won’t go into any detail. I would like to mention, though, that I am very glad that myeloma is no longer being treated with leeches…
Just a few words. The “first well-documented case” of myeloma dates to 1844: a woman, 39 years old. The best known case is that of a 45-year-old man (again in 1844) who was given quinine and steel (?). And a sample of his urine was sent to….Dr. Henry Bence Jones. Ring any bells?

Interesting read. However, I hope it won’t take another 50 years for this history of multiple myeloma to have a chapter on curcumin and other natural, non toxic treatments. Oh, and while we are at it, how about a chapter on the non toxic cures: cyclopamine or DMAPT, the myeloma stem cell terminators?

An impossible dream? Perhaps…

Perhaps not.

Attitude is everything

I received this from a myeloma list friend (thanks!). Wise words, in my view. 

This is something that everyone can relate to in one way or another.

There once was a woman who woke up one morning, looked in the mirror and noticed she had only three hairs on her head.

‘Well,’she said, ‘I think I’ll braid my hair today.’ So she did, and she had a wonderful day.

The next day she woke up, looked in the mirror and saw that she had only two hairs on her head.

‘Hmmm,’ she said, ‘I think I’ll part my hair down the middle today.’ So she did, and she had a grand day.

The next day she woke up, looked in the mirror and noticed that she had only one hair on her head.

‘Well,’ she said, ‘today I’m going to wear my hair in a pony tail.’ So she did, and she had a fun, fun day.

The next day she woke up, looked in the mirror and noticed that there wasn’t a single hair on her head.

‘YEAH!’ she exclaimed, ‘I don’t have to fix my hair today!’

Attitude is everything.

Be kinder than necessary, for everyone you meet is fighting some kind of battle.

Live simply,

Love generously,

Care deeply,

Speak kindly…

Life isn’t about waiting for the storm to pass…
It’s about learning to dance in the rain.

By the way, thanks for all the great comments you all have left in the past couple of days. I appreciate each and every one! Grazie! 

Mayo EGCG study

Thanks to Don (see the link to his blog, Myeloma Hope, on the right), Sherlock and I found out about a 2005 Mayo Clinic study on EGCG (green tea extract, see my permanent page for more information). Sherlock looked it up and sent me the full study (abstract, 2006:, which I read this morning. I almost cried with joy.

In a nutshell, after reading a Mayo in vitro report on EGCG’s annihilation of human CLL (chronic lymphocytic leukemia) cells, several Mayo (and probably non Mayo!) patients with CLL began taking this extract on their own. The researchers report that they became “aware of four patients with low-grade B malignancies,” who “appeared to have an objective clinical response.” Three of them achieved partial response (PR). I would like to note that their markers had been worsening before they began taking EGCG: “Several patients presented here had documented steady clinical, laboratory, and/or radiographic evidence of progression immediately prior to initiation of over-the-counter green tea products and then developed objective responses shortly after self-initiating this therapy.”

A "quick" parenthesis. During the discussion period at the NF-kB-curcumin-cancer conference on Saturday (see previous post), I was sitting up front with the other panel members, facing the audience. Next to me was a very nice doctor, I think a urologist (but wouldn’t bet my life on that). Well, in response to a question about why the Tuscan Regional Government doesn’t promote the use of curcumin, since it works for so many patients, scientific studies support its use in cancer treatment, AND it’s cheaper than many drugs, the good doctor answered, more or less, that science needs time, that anecdotal evidence is not scientific proof, that we have to wait until clinical trials are set up, the results published, blablabla. (I wish this cautious man had been on the Avastin committee, by the way!)
I waited until he had finished, took the microphone, and replied “you are right. Science needs time. But we are patients, cancer patients, and we don’t have that kind of time. If, for instance, I had waited for the results of the MD Anderson curcumin-myeloma clinical trial to be published, I don’t know how I would be doing right now. The first results from the trial were presented in December 2007, that is, almost two years after I began taking curcumin.” I forget what I added, but the tape should remind me (and perhaps slightly amend what I just wrote). At any rate, as I remember (!), he agreed that I was right.

Obviously, I am NOT suggesting that we (cancer patients) go out and try just ANYTHING. That would be absurd and dangerous. Beware of websites that tell you that they can cure your cancer! Avoid those like the plague.

But some substances, such as curcumin extracted from turmeric and EGCG from green tea, have been used for centuries to treat all sorts of ailments, as we know. So I am talking about "ancient" non toxic substances that have in recent years been studied in vitro and in vivo and have scientifically-proven anticancer and chemopreventive effects. These results are not anecdotal anymore. I am not the only myeloma patient to have had success with curcumin (sure, a few haven’t achieved similar results, but that is why we, patients, have to TRY it to see if it works in our particular situation).

My stance is, therefore: what’s the harm in trying a scientifically-proven, non toxic substance for eight weeks to see if your markers improve? If they do, then why not continue taking it? Unless, of course!, you have some health issue such as obstructed bile ducts in the case of curcumin (see my Warnings page).

Okay, so the parenthesis wasn’t "quick" at all!  Let’s have a close look at the Mayo EGCG study. The full study.
According to the Mayo researchers, “EGCG also reduced levels of the protein Mcl-1, an anti-apoptotic protein of known importance in CLL B-cell resistance to apoptosis,” at very very low doses. As usual, I looked up this protein in reference to multiple myeloma, and DUH!, wouldn’t you know it!, the blasted thing turns out to be “essential” for the survival of human myeloma cells in vitro, see abstract: Essential! 
The study provides a detailed description of four CLL cases. Patient number 1 is a 58-year-old woman diagnosed with the “small lymphocytic lymphoma (SLL) variant of CLL/SLL,” whose BMB in 2003, 20 months after diagnosis, showed a “20–25% marrow involvement by CLL/SLL B-cells.” She began taking an OTC (over the counter) green tea supplement containing 315 mg of tea polyphenols. Twice a day. Within a year, “she demonstrated a steady clinical and radiographic decline in her lymphadenopathy with >50% reduction in bilateral axillary nodes and near normalization in the size of all other areas of adenopathy. The patient’s reduction in lymph node size met the NCI criteria for a partial response (PR).” She is doing well (this report was written at 44 months after her diagnosis) and “has not required conventional therapy.”
Patient number 2, a woman, 55 years old, was diagnosed with stage IV disease, asymptomatic. She began drinking a cup of green tea every day ( = two tea bags). Result, 20 months after her initial diagnosis: “>50% decrease in the sum of the products of the six largest lymph node areas consistent with a PR according to the International Working Group criteria for non-Hodgkins lymphoma.”
Patient 3, woman, 50 years old. Five years after being diagnosed with Rai stage 0 CLL (see here for info on CLL staging:, her absolute lymphocyte count (or ALC) increased, and she developed night sweats and fatigue (that sounds so familiar to me: back in the pre-curcumin era, in 2005, I had both of those symptoms). After reading the Mayo report, she began using a green tea patch, “labeled as containing 300 mg polyphenols,” and drinking three green tea packets a day (300 mg polyphenols per packet). Just one month later her markers had improved. At the time of the report, 77 months after her diagnosis, even though she discontinued the patch and was drinking only one packet of green tea per day, she was classified as stable. No conventional therapy.
The last patient mentioned in the Mayo report is a 60-year-old woman diagnosed with Rai stage 0 CLL in 1995. In 2004 her WBC (white blood count) and ALC increased. This concerned her, so (again, after reading the Mayo in vitro report) she began drinking eight cups of green tea per day. After just one week (ONE WEEK!) her markers had improved. She continued drinking green tea, and her ALC decreased by 50%. 120 months from diagnosis, she “is still asymptomatic from her CLL.”
The discussion part of the study tells us that “In total, our report on these patients with low grade B-cell malignancies adds to the growing evidence that food products that contain polyphenols have anti-tumor activity. In fact, the polyphenol containing agents have not only been shown to have anti-tumor activity but have been linked to chemoprevention of human tumors. A number of epidemiologic studies have linked consumption of green tea to a decreased risk of cancer. A wide range of animal models has also supported green tea’s ability to prevent tumorigenesis. Multiple mechanisms have been proposed as the explanation of the effect of green tea, including anti-angiogenic properties, DNA damage, and inhibition of telomerase. More recent studies of EGCG suggest this agent may affect folate metabolism, suppress transcription factors leading to cell-cycle arrest, and induce oxidative stress through generation of ROS. In vitro studies have also shown EGCG decreases levels of anti-apoptotic proteins at drug levels which are achieved in the serum of tea drinkers in vivo.” Sorry for this tremendously long quote, but there was really no way to summarize or shorten it.

The Mayo report is about CLL patients, of course, but let’s not forget that EGCG has been shown to work against myeloma cells, too. And in fact I am in touch with quite a number of MGUS and SMM folks who take this supplement or drink green tea. Successfully. So now I am more curious than ever to find out how Sherlock and I will do on one gram of EGCG combined with our eight grams of curcumin.

Oh, another important note: the study points out that EGCG should be taken on an empty stomach: “The plasma concentration of free EGCG could be increased five-fold when taken in fasting conditions rather than with food.” If you choose to drink green tea (té verde, in Italian) rather than take an EGCG supplement, by the way, well, in this photo Priscilla, my two-year-old cat, demonstrates how to drink it properly (raise your cup to your mouth…just like this). Sorry, couldn’t resist, she is TOO cute.

The Mayo researchers’ final words, which echo the above-mentioned Italian conference doctor’s thoughts: “These anecdotes cannot determine the effectiveness of tea polyphenols, and highlight the need for clinical trials to define the optimal dosing, schedule, toxicities, and clinical benefits before widespread use can be recommended.” The Mayo EGCG clinical trial is currently recruiting CLL patients, by the way:
Well, in my opinion, the Mayo report shows that sometimes we patients just have to jump the gun…proceeding, of course, with well-informed, scientifically-based caution, as always.

Curcumin-cancer conference in Calenzano

Yesterday I presented my experience with curcumin and my blog in front of a crowd of (mainly) doctors and oncologists. You know how you are a nervous wreck and have scary nightmares the day/night before you have a university exam or a job interview? Then you will understand what happened to me on Friday night. I tossed and turned and barely slept a wink. One of my nightmares was all about how I was delayed (through no fault of my own) and totally missed the conference, arriving there the day AFTER. Typical, huh?

Ironically, my nightmare almost came true. We arrived late, a half hour late. I am never ever (never!) late for anything, so this was very trying for me. What happened was that Sherlock, Stefano and I got totally lost in the maze of roads outside of Florence. It should have taken us about 20 minutes to get there. It took an hour plus. Stefano’s GPS system couldn’t locate the castle of Calenzano, so it kept sending us back and forth, hither and thither. And when we paused to ask the locals where the castle of Calenzano was, we got all sorts of conflicting directions. One woman told us to turn left and go back toward Florence, a couple of guys told us to take a right, then the second left, then…you get the picture. A mess!  However, we finally made it to the castle (lovely Medieval castle, by the way, see photos) where we ran into a group of equally frazzled doctors. They were late, too! As a result, the conference began late, so this all ended up being amusing.

The conference was enthralling. The speakers presented their research in a very clear and concise manner. First-rate. Their slides were brilliant visual aids. Even my cousin, who reads my blog but otherwise has little knowledge of transcription factors and whatnot, reported that the speeches were easy to follow. Thanks to Sherlock, I taped the entire event and hope that at least some of it of it ends up being comprehensible. The audio in the auditorium (which was full, I would like to add) wasn’t the best, even though that sounds a bit…odd (audio-auditorium…). 

Mine was the last speech. Since up till then all the talk had been about prostate cancer, transcription factors, genomes, chemoprevention and whatnot, I decided on the spur of the moment to start with something silly. So my speech began, more or less, “Today I am going to present my case. First, I would like to clarify that I do not have prostate cancer (laughter around the room) but multiple myeloma…” After describing multiple myeloma and my medical background in a few words, I then went on to talk about how I discovered curcumin and why I created my blog. According to Stefano, my aunt and cousin (who were there, too), I got the loudest and longest applause. I was so relieved that I had gotten through my speech without fumbling or falling over the microphone cord, though, that I didn’t even hear the clapping!

After the discussion session, I was approached by a few members of the audience and then by reporters from two Florentine newspapers. The articles were published today. Unfortunately, I am identified as having an "incurable pathology," and the words "multiple myeloma" are not even mentioned.

I met a couple of German researchers, one works in Genoa at the National Institute for Cancer Research, the other in the Department of Chemistry and Biochemistry of the University of Munich. They are studying curcumin and its effect on prostate and breast cancers, and are preparing a double-blind, placebo-controlled clinical trial to test curcumin on 100 or more cancer patients. Of course, I told them that if they needed a myeloma patient, I’d be on the next train to Genoa! This isn’t going to happen tomorrow, of course. Anyway, very interesting.

Well, I will probably have more to say on this matter once I have read Dr. Benelli’s book on NF-kappaB and listened to the taped conference. For now, this is it.