I have been horrendously busy these days, which means that I have not had any time to keep going through all the messages and comments I received in response to my “possible viral connection” post. Frustrating, but there you go. Today, however, after reading a few Science Daily articles, I decided to jot down a few notes that I hope will give us some food for thought. I may be wrong, but it seems to me as though we have been handed a couple of central pieces that could help us put together our huge viral puzzle…

The first article, http://www.sciencedaily.com/releases/2010/10/101026121749.htm, informs us that researchers have identified three key molecules in multiple myeloma. They are microRNAs, which, as we can read in the article, are a large class of molecules that are master regulators of many important cell processes. In myeloma, these molecules are “silenced” (Remember the Polycomb repressor genes? Hah.). At any rate, when reactivated, these three molecules wake up p53, which is best known as the tumor-suppessor gene. What happens next is that myeloma cells stop growing and begin dying…This is exactly what we want…More details can be found in the article, of course…

An important excerpt: Overall, Croce says, “our results provide the basis for developing a microRNA-based therapy for multiple myeloma.“

The second article, http://www.sciencedaily.com/releases/2010/10/101025161217.htm, is about (ta tata taratata, drum roll!!!) the relationship between microRNAs and the Epstein-Barr Virus (EBV). A new study shows that EBV uses its own viral microRNAs to evade the immune system. Incidentally, EBV is more common than I thought: up to 95% of U.S. citizens have it. Anyway, in most cases the virus falls into a deep slumber and never wakes up again…but some unfortunate EBV-infected folks, e.g. those with weak immune systems, can develop cancer (Hodgkin’s lymphoma, e.g.). One of the study authors concludes that microRNA activity has a real and potent effect on health. No kidding. I found this article absolutely fascinating and plan to re-read it more carefully ASAP.

And now we get to the third article: http://www.sciencedaily.com/releases/2010/09/100928092843.htm New research shows that it might be possible to reverse (REVERSE!!!) those cancers that are caused by microRNAs. The study focuses on a specific microRNA, miR 380, that disables the tumor-suppressing p53 gene in childhood neuroblastoma. Well, when this group of scientists inhibited pesky miR380, cancer cells died and tumours became much smaller. Yay! The article concludes that While this finding is at an early research stage, it holds much promise for the future treatment of early childhood neuroblastomas and other microRNA- induced cancers. Ah, also for other microRNA-induced cancers…

Now, given Dr. Croce’s above-mentioned words, wouldn’t this bit of research benefit myeloma patients, too?

Exciting times…Too bad that I am in such a hurry today…!!!

A friend (thanks!) posted a link, http://tinyurl.com/3x33nlg, on the “Wall” of the Facebook MM, MGUS and SMM support group. The link will take you to a six-minute video about a child’s ability to delay gratification and how it can predict future success. So the premise is very serious…

But I laughed until tears were rolling down my face…All the kids are fantastic, but the little girl who ends up snorting her marshmallow is simply hilarious! 🙂 Have a look…

Afterwards, I idly wondered how, 45 years ago (!), I might have behaved during the marshmallow test. Well, I am 100% positive that I would have resisted temptation, for the simple reason that I have never liked marshmallows! However, had that marshmallow been magically turned into a piece of Slitti chocolate with toasted almonds…uhm…in that case…not so sure…

I used to keep a diary. I started recording my life and most certainly a bunch of silly stuff after reading the “Harriet the spy” series when I was a kid. I kept a diary off and on until I was in my late 20s, I guess. Hmmm, perhaps even my early 30s. The older I got, though, the less I wrote. I just didn’t have the time anymore…

My daily scribblings had essentially come to an end by the time I came down with infectious mononucleosis when I was in grad school at the University of Toronto (1995). That is a huge regret of mine, since a written record of that period would have come in handy right now. Oh well…who could have predicted what later came to pass?

Okay…ready…get set…go! As mentioned, in April of 1995 I came down with infectious mononucleosis. I don’t remember much from that period, except that I must have had enough symptoms to go to the doctor. Luckily, I still have my Canadian test results, which means that I can provide a few numbers. In mid April, my AST was 196, which is about ten times the high end of normal; my ALT was 458, and my alkaline phosphatase was 250, which is also way above the normal range (high end: 115 U/L).

But the main point is that I tested positive for “Heterophile AB” (=infectious mononucleosis, which is caused by the Epstein Barr virus, or EBV).

I don’t remember how long it took me to recover…I probably spent at least a couple of weeks, possibly a full month, locked inside my cosy (=tiny, but adorable) one-room Victorian attic apartment on Huron Street in Toronto…together with my beloved cat, Keshé. A very kind university friend did all my shopping, including cat food, of course!

As for the EBV aftermath, all I recall is that I was exhausted all the time and for a long time…so much so that my above-mentioned friend bought me a couple of books (which I still have) on the Chronic Fatigue Syndrome. Eh. Oh, and one more thing: at the end of May 2005, while Keshé and I were visiting my parents in the States, I came down with a nasty urinary tract infection. I was in such pain that my parents drove me to the Cape Cod Hospital emergency room, where, after a battery of unnecessary tests (I mean, hello?, even I knew that it was a UTI), I was finally diagnosed and treated. Well, I guess it is not surprising that my immune system was quite low at that point…

Anyway, I made a full recovery from EBV (and from the UTI, too, of course): I spent the summer of 1995 working full-time on a U.S. college campus. Then, as soon as Keshé and I returned to Canada, we moved from Toronto to another Canadian city, where I taught Italian language and literature full-time at a prestigious but smaller university. Oh, I loved my students, and I loved that job dearly, even though it was very challenging and also meant that I had to postpone graduation, since I didn’t have any spare time to do any research for my thesis. But what a golden opportunity for a Ph.D. student: a full-time teaching job!!!

Well, at the end of the academic year (=summer of 1996) Keshé and I moved back to the U.S. That fall I received and turned down an offer to teach again at the above-mentioned prestigious university (I still can’t believe I said no!). I left Keshé in the loving care of my parents and came to Italy to finish doing research for my Ph.D. thesis. And that was when some of my closest Italian buddies decided to introduce me to one of their friends…a guy called Stefano. 🙂 Well, needless to say, my original two-month “thesis research only” trip to Italy turned into a much longer stay. Aaah, true love!

Sometimes I think that, if I had accepted that Canadian teaching job, I would never have met Stefano. Eeek! Has anyone seen “Sliding Doors,” a (great) movie with Gwyneth Paltrow? Well, my life has been a succession of sliding doors…And I am positive that I have chosen the right ones…thus far!

Okay, let’s see. I stayed with friends in Florence until the spring of 1997. Yes, Stefano and I spent a lot of time together, but I also finished working on my thesis (doing research in various libraries, writing and so on). I returned to Toronto only to take my Latin Reading Exam, defend my thesis and attend my Ph.D. hooding ceremony…Then I dashed back to Italy to move in with Stefano (fall of 1997).

The fall/winter of 1998 was a very stressful time for me. I had two challenging jobs: 1) I was hired by a U.S. college to teach an Italian language course, and 2) I was also teaching English for one of the many English language schools here. So I taught Italian in the morning and English in the afternoon and evening (the latter job entailed driving around Tuscany, too). I still don’t know how I managed…but manage, I did!

Incidentally, this may seem like a long and boring list of unrelated and irrelevant details (and perhaps that is all it is…), but I have come to believe that stress and overwork might have contributed to the onset of my MGUS… This is pure speculation, of course…

Anyway, Stefano and I got married in May 1999. I continued to work like a maniac…

In November 1999 a monoclonal component showed up in routine blood tests…

In the year 2000 I started being plagued by yeast infections, which continued, off and on, until I began taking curcumin (I haven’t had one such infection since early 2006…not one).

Well, this is just a brief and extremely chatty introduction to my upcoming (!!!) series on the possible viral/MGUS connection, which I am working on in my snippets of free time…

Please be patient–this is not an easy topic, and I have a lot of material to examine…

…fantastic Halloween… 🙂

A blog reader sent me this spooky but fun e-card, and I just had to share it, even though it’s not Halloween just yet… http://tinyurl.com/yhgp2lz Enjoy!

I have been sifting through some of the messages and comments that I received as a result of my “possible viral connection” post (= September 28). A bit overwhelming…so I decided to stop for a few minutes and write an amusing (?) little story…

This is actually quite a long saga that I will do my best to stuff inside a nutshell: for more than a year now, we have wanted to change internet providers. The company we had used since we moved into this house had become too expensive and slower than other providers. But changing providers isn’t as easy as it sounds…

For some inexplicable reason, our “old” provider refused to free up our line. We tried all sorts of approaches—nice, reasonable…and finally, exasperated and angry. Stefano even threatened the company with legal action. In January, in a last-ditch attempt to force their hand, we stopped paying our monthly bills. Incredibly, nothing worked. Our line was still active, which meant that we spent several months (until a few weeks ago) with free Internet service. You would think that getting free DSL would be fabulous, right?

But no, it wasn’t. We knew that this couldn’t go on forever. Indeed, Stefano was worried that one day our former company would wake up, smell the coffee and sue us for back payments. So we went ahead and took drastic measures: we changed our phone number. A bit of a drag…

But at the time I didn’t know how much of a drag it would turn out to be. Almost immediately, I began getting calls of this type…and no, I am NOT KIDDING (except the questions were/are all in Italian, of course, as were/are my answers):

“Pronto? Giuseppina, are my shirts ready?”

“Giuseppina, listen, I need my suit asap…”

“Pronto? May I speak with the manager?”

“Ciao Giuseppina, when can I stop by to pick up my blanket?”

Giuseppina??? Shirts? Suits? Manager? Blankets? Whaaat?

I checked online and discovered that our new number—which we cannot change now without going to a lot of trouble, not to mention expense!—had recently belonged to a very popular dry cleaning service that had moved to another part of town…

Since our “new” number is still listed under “dry cleaners” on various Florentine business websites, I will probably keep getting daily calls from company reps wanting to sell me all sorts of stuff, from sausages and cheeses made in the Italian region of Calabria (I didn’t make that up–it really happened!) to amazing, futuristic dry cleaning equipment/products. Aaaaagh!!!

Perhaps I should just give up and start my own dry cleaning service…My cats could help me untangle the wire clothes hangers, for example (see photo)… 

Well, actually, things could be worse. Years ago, a close Italian friend of mine was assigned a new phone number after she and her family moved to their current home. They began receiving very, er, peculiar calls…mostly at night…Their number, you see, used to belong to an…uhm, how can I put this politely?…an escort service…(Ah yes, they had to change it)…

Every day, when Stefano gets home from work, I give him a list of my daily dry cleaning calls. Instead of sympathizing, however, he laughs, which makes me hope with all my might that one day, while he is at home and answering the phone, we will have a flurry of dry cleaning business calls…

After he gets called “Giuseppina” for the umptieth time, we’ll see who’s laughing! 🙂

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…especially since it will probably take me a while to read through all the “virus” messages/comments–thanks everyone!–in order to put together a series of meaningful, I hope!, posts (=for more information, please see my September 28 2010 post…).

Speaking of viruses, I would like to mention, quickly!, that I have made a full recovery from the bronchitis that struck me down a couple of weeks ago. Last week my family doctor changed the antibiotic that Stefano and I were taking (awww, isn’t it adorable that we do everything together, including getting sick and taking antibiotics together? 🙄 ), and that reaaaaally worked. So, he is fine, and I am fine. Just a bit tired, but that is not surprising: the new antibiotic was so strong that it probably would have resuscitated a Tyrannosaurus rex!

Okay, let’s get to the matter at hand: 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)…

This morning, thanks to a link provided by a Facebook friend, I read an “Atlantic” article (see http://tinyurl.com/35fe5kb) that didn’t entirely surprise me but, well, provided some fodder for reflection…

Upon finishing the article, my first thought was: could this provide an answer to the questions that Art asks in the comments that he left on my recent “dietary fish oil” post? Namely, why did the fish oil researchers use such an unusual ratio of DHA/EPA in their mouse study? What is the point, since that particular ratio is not commercially available? Why didn’t they use an EPA/DHA ratio that comes close to what we, fish oil consumers, can buy? Very odd. For the moment, though, until we know more, those questions remain unanswered.  

Let’s have a look at a few interesting quotes from the “Atlantic” article: “Randomized controlled trials,” which compare how one group responds to a treatment against how an identical group fares without the treatment, had long been considered nearly unshakable evidence, but they, too, ended up being wrong some of the time. “I realized even our gold-standard research had a lot of problems,” he says. Baffled, he started looking for the specific ways in which studies were going wrong. And before long he discovered that the range of errors being committed was astonishing: from what questions researchers posed, to how they set up the studies, to which patients they recruited for the studies, to which measurements they took, to how they analyzed the data, to how they presented their results, to how particular studies came to be published in medical journals.

The “he” mentioned in the above paragraph is Prof. John Ioannidis, one of the world’s foremost experts on the credibility of medical research. He found that 80% of non-randomized controlled trials, and as much as 20% of randomized trials, are wrong!

Oh, but this sentence struck a chord with me: We think of the scientific process as being objective, rigorous, and even ruthless in separating out what is true from what we merely wish to be true, but in fact it’s easy to manipulate results, even unintentionally or unconsciously.

It reminded me of a very peculiar and quite awkward attempt (http://tinyurl.com/ygl775x) by a group of Belgian researchers to scare people diagnosed with MGUS from using curcumin. They write that curcumin inhibits IL-12, which plays a central role in protecting us against pathogens and tumors. The central part of their argument is based on one, and only ONE!, case…the case of a man with all sorts of ailments…their conclusion was so full of holes that it looked more like a lump of Swiss cheese than anything else… Anyway, I reported about that “study” in March 2010, so I don’t need to repeat what I have already written: http://margaret.healthblogs.org/2010/03/30/brussels-sprouts-instead-of-broccoli-part-2/ 

A few days after publishing that post, a light bulb went off in my head. I checked the effect that some of the drugs used in conventional myeloma treatment have on IL-12. Well, lo and behold!, I found that all of them, from Velcade to thalidomide, inhibit IL-12. So why aren’t scientists and researchers all over the world getting all upset about that, eh? The obvious answer still makes me seethe with anger…By the way, here is the link to my third (and final) scathing post: http://margaret.healthblogs.org/2010/04/01/about-to-leave-for-rome%e2%80%a6and-a-few-random-thoughts%e2%80%a6/.

This proves the point made in the “Atlantic” article–that researchers can manipulate and use data for their own purposes. In this particular case, this group of Belgian researchers conveniently “forgot” that–every single day, all over the world–thousands, perhaps hundreds of thousands, of myeloma patients receive drugs that inhibit IL-12 undoubtedly in a much more stronger manner than curcumin (which is not a drug)…

Again, I quote Prof. Ioannidis: “Science is a noble endeavor, but it’s also a low-yield endeavor,” he says. “I’m not sure that more than a very small percentage of medical research is ever likely to lead to major improvements in clinical outcomes and quality of life. We should be very comfortable with that fact.” Comfortable??? I find it shocking…absolutely shocking…

Quite some time ago, a blog reader (thanks!) sent me the link to a website created by a Boston University biologist, Dr. Thomas Gilmore, which, among other things, provides a list of natural inhibitors of the NF-kappaB signalling pathway. See: http://tinyurl.com/ybquq2g I intended to post about it earlier, but I didn’t…then time passed and, oh well, you get the picture! Well, better late than never…

I urge you to check out the website, especially if you have any interest in the NF-kB signaling pathway. Sigh, it will probably take me at least a century to go through all the substances on this list 😉

Another thing: if you click on “Inducers,” you will also find a list of things that induce NF-kB activity…Not surprisingly, viruses, bacteria and inflammation are right there at the top… 

And finally, in 2007 Dr. Gilmore published a study on multiple myeloma titled “Multiple myeloma: lusting for NF-kB.” It is fully available online: http://tinyurl.com/33ulkj9 I still have to read the whole thing carefully, since it appears merely to reinforce the point that NF-kB should be a target in myeloma treatment, which we already know…and which is one of the main reasons I take curcumin and other NF-kB natural inhibitors…

The title of a new study says it all: “Dietary Fish Oil Alters T Lymphocyte Cell Populations and Exacerbates Disease in a Mouse Model of Inflammatory Colitis” (see abstract: http://tinyurl.com/3yllblr). I was concerned when I first read of this study because I take two grams of fish oil per day, and I certainly do not want to take anything that might hurt me…

So I asked a friend (thanks!) to get the full study for me. I wanted to read more details about doses, the type of fish oil administered to this unfortunate group of mice and any other pertinent information. Let’s see…In a nutshell, four weeks after being infected with Helicobacter hepaticus (which gave them mild colitis and increased their risk of developing colon cancer…), mice consuming relatively high doses of dietary fish oil, as we will see in a second, were worse off than those in the control group.

Well, I have to admit that my first draft of this post was jam-packed with technical details about colon cancer, colitis, IBD (=irritable bowel disease), the mice, their diets and whatnot. But, after getting to the Discussion part of the study, I had second thoughts about going overboard with too many details. After all, what we really need to know can be found in the final paragraph, as follows:

Investigations regarding FO supplementation in human IBD have used FO doses ranging between 500 mg/d and 7 g/d. Our diets mimicked 1 g/d (0.75%), 3 g/d (2.25%), 5 g/d (3.75%), and 8 g/d (6.00%) DFO when calculated as a component of a 2,000 kcal human diet. We observed inflammatory and dysplastic changes at the 3, 5, and 8 g equivalent. The most dramatic increase was observed at the 8 g/d dose. Currently, efforts are under way to establish dietary reference intakes for EPA and DHA due to substantial evidence supporting beneficial effects of FO consumption in the prevention of common diseases such as coronary artery disease and cognitive decline. Consumer intakes of DHA and EPA continue to increase with growing FO supplement consumption and addition of n-3 PUFAs to foods (i.e., functional food). Studies from our group and others’ advocate establishing a tolerable upper limit for FO consumption to protect certain immunocompromised sectors of the population who may be at risk for pathogen-associated enteric inflammation and gastrointestinal cancers.

Now, the mice that developed inflammatory problems belonged to the groups that had a high daily intake of fish oil–the human equivalent of 3 to 8 grams/day. The more they took, the worse off they were. Another point: as we read the abstract/study, let’s not forget that these mice were not healthy little things. No, they had been infected with a nasty virus that can lead to the development of colon cancer…

Two more considerations (apart from the obvious one that, as far as I know!, I am not a…mouse! 😉 ): 1. I have never taken more than 2 grams of fish oil per day; 2. I live in Italy, where foods are not (yet!) fortified with dietary PUFAs or even vitamins. Therefore, it appears that my daily intake of fish oil is perfectly safe, especially since I do not suffer from colitis or IBD…

As always, though, it is best to be cautious. And so I will continue to take two grams of fish oil per day…but no more than that.

Well, knock me down with a cat’s whisker!!! Do you remember the Toyota race car design competition? Well, guess what???? The International Myeloma Foundation’s design, “Myeloma Survivor,” is a FINALIST!!!

And all this happened thanks to our votes!!! Yaaay!!!

But this means that we have more work to do. A lot more work. We need to keep voting every day for the next eight days. So please go ahead and vote on as many computers as you have access to; ask your friends, neighbors and family members to vote; book an appeal on your Facebook page; twit the news on Twitter and tell all your social network friends to get clicking,…whatever it takes! I mean, we now have a once-in-a-lifetime chance to help raise myeloma awareness! Here is the link: http://www.sponsafier.com/#/gallery/view/367247

Besides, there are ten other designs in the competition. Are we going to allow “Myeloma Survivor” to be beaten by “Home Depot Hippie” or “Nick&Friends” or…”Jazzy”??? Noooooo!!!

Click away, everyone! WE CAN DO IT!!! 🙂