Thanks to a post written by my blogging friend Paula (=Feresaknit’s myeloma and knitting blog), this morning I discovered that, in addition to being number TWO on a “top 10 MM blog” list on Cure Talk (see my June 18 post), I’m also on another list of “talented” bloggers: http://goo.gl/YYbur Nice!!!

I’m pleased that John’s blog (Good Blood, Bad Blood) was on this list, too, since his posts always make you feel so relaxed and fabulous…so beautifully written…such a pleasure to read…John is one of my favorite bloggers, for sure. Indeed, one of my favorite people!

I would now like to mention a few blogs that haven’t made these two lists, and in my modest opinion deserve to be there more than mine: 1. Beth’s blog (see my link to Beth’s Myeloma blog)…As I mentioned in my June 18 post, Beth is our pioneer MM blogger, yes her blog was THE FIRST, and she has been and is an inspiration to the entire MM, SMM and MGUS community; 2. Laughing Plasma Cells, who hasn’t been blogging much, recently, but I just love his blog; 3. Lori’s Riding the Wave blog. I hope to see those blogs on future “top” lists. If not, I’m going to make MY OWN list! So there. 😉

Soooo, let’s see…I’ve now been called “revolutionary” and “talented.” Oh, and a “hero,” too (well, that’s a huuuuuuge exaggeration, mind you…but it amuses me…).

What more could a girl want? 😉

UPDATE: Well, I’ll be…! I was just checking the Cure Talk website and found an article about me. Surprise! Well, ok, about my blog: http://goo.gl/v9iT8 It’s mostly long excerpts from my posts, but still… 🙂

A few days ago, I got very excited about the announcement of a newly released study: “Research at Baylor University shows curcumin awakens sleeping genes and reignites tumor suppression activity.” Holy crackers! Here is the link: http://goo.gl/9fN2X

I was particularly struck by one of the things said by Dr. Ajay Goel, the study’s main author: our genes are very much affected by dietary and environmental factors, which is good news. That means that you can influence 95% of all cancers with environment and lifestyle changes. Uhm, come again? Ninety-five percent??????? Stunning! Now, why don’t our doctors tell us stuff like that?

I tried to get my hands on the full study but could only find the abstract (= not available for free online, sorry…), from which I take this excerpt: “Our data reveal novel evidence for curcumin-mediated changes in DNA methylation in the colon.” Now, this abstract is incredibly technical, and I confess understood very little, but the changes brought on by curcumin were clearly positive ones…There was a mention of the potent chemopreventive effect of curcumin, in fact.   

Methylation…methylation…DNA methylation…what the daisybonkers does that mean? Forget the “explanations” that I found online…too confusing and complicated. Let’s just say that methylation is an essential process for normal development AND is also linked to important cancerous events. It silences genes. Hmmm. Silence of the genes…

I’m focusing on epigenetics for a few moments, even though it’s really slippery territory for a greenhorn like me!, because of a very interesting new study discussed in this Science Daily article: http://goo.gl/WHUVY). As I understand it, in normal cells methylation is a well-regulated process, whereas in cancer cells it is totally chaotic. And it is thanks to this chaos that a tumor is able to turn genes off and on, depending on its needs. Methylation, in other words, helps tumors adapt to their environment, which is really baaaaad, of course.

This new study, however, suggests that cancer cells can be “re-educated,” which conjures up hilarious mental images, I must say…images of scowling, sullen cancer cells sitting at their desks in front of a computer screen that displays the following message: “you WILL behave, you WILL behave”…Okay, Margaret, stop it. 🙂 Point is, epigenetic research might make cancer treatments more tolerable and successful…AND turn cancer cells back into normal cells (wow). Sounds like science fiction to me right now…but who knows?

Let’s now get back to those sleeping genes and the Baylor University study (first part of this post). The amazing thing is that curcumin apparently has the ability to reawaken the sleeping beauties, and, after making them swallow a few cups of strong coffee (oh okay, so I’m a bit giddy today 😉 ), enable them to whip the…I mean, annihilate those nasty evil cancer cells…By the way, the cells tested in the study were colon cancer cells, but Dr. Goel thinks that other types of cancer cells would have the same results…

Now, before ending, I should mention a couple of things. The announcement of this study was given in a press release from a company called Europharma that distributes BCM-95, a type of curcumin that my friend Sherlock and I tested a few years ago with very poor results (but that doesn’t mean it won’t work for others…just that it didn’t work for us). And Dr. Goel is on Europharma’s Scientific Advisory Board.

That said, I have no reason to doubt the data is true. None. We already know, e.g., that curcumin works on a molecular level (remember my posts on the Polycomb genes? Exactly…)…Just have a look at this abstract: http://goo.gl/JlNbm And there are more.

In conclusion, I wonder if the epigenetic capacity of curcumin is the reason for my ongoing stability, in spite of the fact that I’m in the high-risk-for-progression category of smolderers. Hmmm…

Only time will tell…

P.S. By the way, those interested in the sea cucumber/SMM trial should read the comment that Arlene K left on yesterday’s post. It’s a small world, eh! Thanks, Arlene, keep up the GOOD work and please keep us informed! 🙂

A HELP PAGE created in June 2011

[Work in progress…suggestions appreciated…]

Last month, a blog reader, = a research scientist with myeloma, suggested that I create some sort of “master listing” that would make it easier for readers to locate stuff. Good idea. I’ve realized for some time now that my blog has gotten a bit out of hand, as the saying goes. There is an amazing amount of information here (a lot of which comes from you, my readers!). Unfortunately, compared to a proper website, the blog format is a bit constraining, so I wasn’t able to get toooooo creative. Still, I hope that what I’ve done will be of help…especially to new readers… 🙂

In 2007, when I created my blog, who’d have thought I would find so much material? Back then, what I knew about anything “alternative” could have fit into the smallest pocket of my jeans. I had no idea that there were so many studies on non-toxic, anti-myeloma substances out there. And now there are even more…It’s encouraging…but frustrating at the same time, when you realize that most of it, most of this amazing research, gets totally ignored, even the most promising items, mainly because it’s not profitable…That is why our role, as patients, is so incredibly important. And we can make things change. Many MM doctors know about curcumin (no matter what they think about it, they KNOW about it) now. That was NOT the case when I began taking it (Jan 2006). But I digress, as usual!

Point is, my blog eventually became this huge, er, THING…daunting even for me, the creator/researcher/writer. I mean, I sometimes have trouble remembering if I’ve already written about a certain substance and have to double-check my own blog, using the Search box…Speaking of which, when I revamped my Page section, I put the blog Search box at the top, where I have also now put the section devoted to readers’ comments, which are always fun and interesting to read…informative, too!

At any rate, I hope what follows will make things easier for you, and perhaps even for me…Okay, ’nuff said. Let’s dive right in…By the way, if I do NOT put a direct link next to the item (below), it means that I’ve written too many posts about it…so you should just do a search of my blog or, if you can’t find what you’re looking for, just contact me directly…

POSSIBLY BAD STUFF:

• Gadolinium: http://margaret.healthblogs.org/life-with-myeloma/what-is-multiple-myeloma/mris-and-gadolinium/
• Asparagus: http://margaret.healthblogs.org/2011/06/09/no-more-asparagus-for-me/
• Hyaluronic acid: http://margaret.healthblogs.org/life-with-myeloma/what-is-multiple-myeloma/myeloma-and-hyaluronic-acid/
• Gluten intolerance (?): http://margaret.healthblogs.org/life-with-myeloma/what-is-multiple-myeloma/multiple-myeloma-and-celiac-disease/

POSSIBLY GOOD STUFF (Check under “Other anti-myeloma/cancer substances”). Here is a list of stuff I’ve tried:

• Curcumin, C3 Complex (in various clinical trials)
• Fish oil, molecularly distilled (clinical trial, MGUS/SMM/CLL patients)
• Quercetin (no more than 1.5 grams)
• Vitamin D
• Ashwagandha/Indian ginseng/withanolides (an interesting ashwagandha/curcumin trial in osteosarcoma is recruiting patients right now)
• Resveratrol (see my notes on the terminated SRT501 trial)
• EGCG/green tea (clinical trial, MGUS/SMM patients)
• Saw palmetto/Serenoa repens
• Reishi/Ganoderma lucidum (need to retest; ran out of capsules…)
• Black cumin/Nigella sativa
• Scutellaria baicalensis/Chinese skullcap
• Capsaicin

Now for stuff I still haven’t tried (and may never try…either because it’s too risky/toxic or because I haven’t found a reliable, affordable AND safe source):

• Betulinic acid
• Boswellia
• Butein
• Cardamonin
• Ciclopirox olamine (clinical trial, patients with relapsed or refractory hematologic malignancies) and Piroctone olamine (these are both anti-fungal treatments)
• Cyclopamine (possible eradication of the MM stem cell; BUT too toxic to try, in my opinion)
• Emodin/turkey rhubarb
• Genistein
• Guggulsterone
• Hesperetin
• Honokiol
• Kinetin riboside
• Moringa oleifera
• Oleanolic acid/olive oil & leaves (an interesting clinical trial is currently testing olive polyphenols on postmenopausal women with decreased bone mineral density)
• Papain/papaya
• Pristimerin
• Sea cucumbers/TBL 12 (currently being tested on untreated asymptomatic myeloma folks in two clinical trials in NYC)
• Sesamin
• Ursolic acid
• Xanthohumol (hop plant…beer!)
• Zalypsis

Note: If you’re on doxorubicin, eat spinach: http://margaret.healthblogs.org/2011/06/05/if-youre-on-doxorubicin-eat-spinach/

DIET: I don’t have any particular advice in this department…except to say that there are a number of cancer-fighting foods that should be part of our diet (whenever they are in season), such as anything in the broccoli family, as well as onions, garlic, turmeric, ginger…Also, try to cut down on your sugar intake (cancer cells LOVE sugar). Since 2005, I have cut down on my sugar intake. And I also cut down on pasta during summer, when it’s too hot to eat it anyway…Ah, and here is a note: Dr. Nicholas Gonzalez found that his myeloma patients did best on a high-protein, high-fat diet. Now, I’m not an avid meat-eater (on the contrary!), so the high protein part is a bit of a problem for me (see my Page for more updated details, though)…

IMPORTANT POINT: take a daily dose of hearty laughter…the kind of laughter that makes your belly shake and ache…Myeloma cells, you see, have no sense of humor and really hate it when we laugh… 🙂 So have a look at the Laughter section of my blog…lots of funny stuff, there…jokes and links to funny videos…

OTHER IMPORTANT POINT: try to avoid stress…See my page on Myeloma and stress: http://margaret.healthblogs.org/life-with-myeloma/what-is-multiple-myeloma/multiple-myeloma-and-stress/

As I mentioned, this is a work in progress. The Page (on the right) won’t have all the introductory stuff, of course. Otherwise, it’d be too long. Okay, I have to go now. Have a great Sunday, everyone! 🙂

Wait a minute. What were Stefano and I doing in the center of Florence this morning, snapping photos of flag throwers (sbandieratori, in Italian) and of the historical procession that marched from Piazza della Signoria to Piazza Duomo, celebrating the birthday of Florence’s patron saint, San Giovanni Battista, or St. John the Baptist? Hmmm. There’s something very wrong with this…picture!!!

You see, we were supposed to have been on Skokholm Island in Wales, UK, snapping photos of puffins all weekend. This weekend! We had a booking! So what were/are we still doing in Florence???

Well, let me explain. You may have noticed that I’ve been a bit distracted, lately. This is because a lot has been happening in my personal life. In OUR personal life. Mine and Stefano’s. Mainly, that Stefano has accepted a new job and has quit his old job (where he’s been unhappy for quite some time now). So this is going to be a big change for him…and a big change for me, too. A good change, of course! (We hope…!)

Point is, this “deciding and accepting and quitting” period has been a bit hard on both of us. Happy in many ways but also quite stressful. His former employer didn’t want him to leave and is still in a state of total shock. So this wasn’t a simple matter of handing in a resignation…

At any rate, I’m happy to note that things finally seem to be settling down. After a bit of push-and-tug, back-and-forth negotiating with his former (or rather, soon-to-be-former!) employer, Stefano will be able to leave his old job at the end of July…

And our new life will begin…

We’re happy, of course, as I mentioned…but changes can be scary. Yup. And they can also force you to give up things that you have been looking forward to all year. We’ve had to give up our annual, much-awaited visit with our beloved Welsh puffins. Stefano is in the middle of his job transition period right now and can’t take any holiday time. Too bad, since this is the first time in yeeeeeears that Skokholm Island has reopened to overnight visitors. We were really excited about that and looking forward to being “pioneers” on this “new” island. No matter…the puffins will still be there next summer…

And Stefano’s happiness is the most important thing, of course! 🙂

Let’s go back to this morning…It was a lot of fun to watch and film all the lovely flag throwing, listen to all the triumphant Renaissance music and take photos of Florentines dressed up in Renaissance costumes. My mind did frequently stray, I admit…and I wondered about the puffins…But yes, in the end, it was fun to be in town today…And I got some decent photos. By the way, some of the flag throwers are children (see photos 2 and 4). I didn’t realize that until I got home, since I had to hold my camera above my head to take almost all my photos and movies (there were so many people there, mostly tourists who didn’t even know what was going on but who clearly loved the show!)…

Soooo, if you happen to be in Florence on June 24^th, don’t miss the historical procession and the evening fireworks (best seen along the river)…

As I announced last week, I’ve finally decided to tackle the possible virus connection topic that we began discussing seriously last fall (boy, time does fly, doesn’t it?!!!) here on the blog. Back then I received many “viral” messages and comments…so many, in fact, that I simply felt too overwhelmed to do anything with them. I tried, but my brain kept going into shutdown mode. I had to give up finally and look at other topics…

Oh, it wasn’t just the messages, mind you…I was also overwhelmed by all the virus connection studies that are still sitting inside a file on my desktop. To be honest, I still feel a bit overwhelmed, but okay the time has come to stop procrastinating, to sift through this rather daunting mountain of information and try to figure out if there could be a pattern or something that might be useful to us…

I need to do this slowly, though, in order to retain my sanity. So it’ll take some time to get through all the material and organize my thoughts and your comments (Note: new virus connection comments are welcome…). Uhm…please put on your patience hat… 🙂

I’ll begin with a Hungarian study published in 2006. As luck would have it, the full shebang is available online: http://goo.gl/Ot37F This is great, since you can read it, too, and see if I’ve missed any important bits or misinterpreted the data etc.

These researchers tested 69 MM patients (48 in stage III, 21 in stage II) and a smaller number of MGUS folks (16 with MGUS and 10 with Waldenström’s macroglobulinemia) for the presence of four herpes-related viruses, as follows:

• Epstein-Barr, which I myself contracted toward the end of my grad school period (and, if my memory serves me right, I also had mononucleosis in my last year, undergrad, at Harvard; I don’t have those  medical records anymore, unfortunately, but I remember being quite ill at one point and going to the student health service center…).
• Cytomegalovirus or CMV (I have a good story there, but that’s fodder for another post…).
• Two herpesviruses: HHV-6 and HHV-8, which (the latter only!) has been associated with the development of multiple myeloma.

More on HHV-8: this virus has also been implicated in the progression from MGUS to MM. Hmmm, I don’t think I knew that…

The control group consisted of 44 patients with non-Hodgkin’s lymphoma…Now, I confess that this part puzzled me…Why use NHL patients? There is no explanation for that. I can only surmise…I must admit that my lack of a scientific background irks me at times like these…

At any rate…these researchers discovered that the most common virus present in the bone marrow and blood both of the MGUS and MM group was, TA DAAA!!!!, Epstein-Barr or EBV. Yes, it turned out that more than half the patients had had EBV at some point (indeed, some were actually in the acute phase of the EBV infection at the time of the study). So they conclude (see abstract) that:

1. since 13 of the HHV-8 positive MM patients also had an acute EBV infection and
2. since there was nothing similar in the control group, then
3. in addition to HHV-8, the transitional reactivation of EBV may also play a role in the pathogenesis of MM.

Pathogenesis (I had to look this up) means “the mechanism by which the disease is caused.” Aha. This was the most interesting part of the study for me, especially given what I mentioned above, i.e. that I almost certainly contracted mono in college and then, less than ten years later (while working toward my Ph.D. at the University of Toronto), I tested positive for EBV…I had a recurrence, it seems. So…could EBV have been my trigger or one of my triggers? Notice, in Table 2, that more than half the folks in the NHL control group also tested positive for EBV…Is this just a coincidence? Oh how I wish this study had had a healthy control group, too…

Well, it didn’t, so let’s fast forward to “Results.” As mentioned above, more than half the MM folks tested positive for EBV, also known as HHV-4; however, the difference between the MM and the control groups was only significant for HHV-8. Oh. Okay.

As for the MGUS folks, I thought it was interesting that nine (out of sixteen) had EBV antibodies. Again, more than 50%…

Interesting excerpt: In the history of HHV-8 research, it has been exceedingly difficult to obtain lymphoid cell lines (e.g. effusion lymphoma) devoid of the EBV genome (Renne et al., 1996; Said et al., 1997). This raises the issue of a possible interaction between these two lymphotropic herpesviruses, at least in diseases of the lymphoid system. Could that have been the reason for choosing the NHL control group?

So what’s the bottom line, here? Well, there certainly seems to be a potential association of MM and HHV-8. But there is more. The final sentence in the study reiterates the final sentence in the abstract: The data also indicate that in addition to HHV-8, the transitional reactivation of EBV may also play a role in the pathogenesis of MM.

Personally, I think there must be something to the EBV connection…perhaps not for all MGUS, SMM and MM folks, but for a subgroup, anyway…

UPDATE #1: Even though it’s early in the game, I thought this “viral” business deserved to have its very own Page (I stuck it right under “Myeloma triggers”). This will make it easier for those interested in this topic to read about it: http://margaret.healthblogs.org/life-with-myeloma/what-is-multiple-myeloma/mgus-to-mm-progression-sox2/myeloma-triggers/virus-connection-to-myeloma/ 

UPDATE #2: Thanks to Hanna for this National Center for Infectious Diseases summary of EBV: http://goo.gl/LXMZA

Ah yes, another quick post today…published between one errand (done!) and another (not done!). 🙂

I just stumbled onto a website showing ten yoga positions that might help fight depression and anxiety (mild forms…read the warning in the first paragraph before trying anything, eh). My favorite position is the last one 😉 : http://goo.gl/CGP9N 

By the way, we MM folks should be careful about some of these positions, especially the ones that put a strain on the back, like #7 and #8. We don’t want to do any damage to our bones, of course! But there are some easy positions, which I think I’m going to try, even though I don’t suffer from depression OR anxiety…far from it, in fact! But hey, doing things like meditating and deep breathing makes me feel soooo good afterwards…Oh, speaking of which, remember to breathe deeply with your belly (diaphragmatic breathing, to be technical). If you don’t know what I’m talking about, see, e.g.: http://goo.gl/MxHxp. Belly breathing makes a huuuge difference! Try it! 🙂

I’m not sure if I’ll be able to finish editing my new “virus connection” post today, since I have a lot of other things to do, errands to run etc., so I thought I’d at least post the link to a list of photos that made me laugh so much this morning that tears began rolling down my face. This is really one of the funniest things I’ve ever seen (thanks, Jessica!): http://goo.gl/cDhn5 Enjoy! 😀

Wow. I’m sooo pleased about what I stumbled upon this morning…

First…I’ve written about sea cucumbers before, see http://margaret.healthblogs.org/2010/12/06/more-on-sea-cucumbers/ and http://margaret.healthblogs.org/2009/10/15/sea-cucumbers-and-smoldering-myeloma/ So I knew there was a clinical trial testing TBL 12 on “high risk” asymptomatic myeloma patients. Here’s the link to the first trial: http://goo.gl/UGw7Q Some results were presented at the ASH 2010 meeting (see my “More on sea cucumbers” Dec 2010 post, above link). Mainly, a decrease in M-spike, which is hardly a shabby result, eh? 😉

At any rate, while perusing the clinical trials website for something totally unrelated to sea cucumbers this morning, I was a bit surprised to come across another Phase II clinical trial (New York University School of Medicine). Fantastico!!!

Anyway, since I’m still working on and editing a post (on something that has nothing to do with sea cucumbers…), I figured I’d go ahead and post the link to this second trial, , for those interested: http://goo.gl/iSXeQ Sigh, why don’t any of these interesting trials take place in Italy? …

I don’t normally publish two posts in a day, but today I’m making an exception. Remember the movie “Children of a lesser god?” Ohhhh, I loved that movie, and in fact, many years ago, I took a course in American Sign Language and decided to become an ASL interpreter (then my life took a different turn, and I went to grad school where I studied Romance langs and lits instead…). At any rate, just a few minutes ago I read a very moving story written by Marlee Matlin, whose Dad was diagnosed with multiple myeloma about a year ago: http://goo.gl/dzLMd (thank you for the link, Dr. Berenson!). Have a look…

WOW! Blog reader Kim informed me this morning that my blog has made SECOND PLACE on the list of the top ten myeloma blogs she compiled for Cure Talk, see http://goo.gl/96Yfq. I’m reallllllllly blown away. Thank you so much!!!  🙂

Hey, where’s my medal? Uhm, don’t I at least get a free lunch or something? How about breakfast? 😉

Seriously now, if I had a medal, I’d mail it off to Beth, who was THE VERY FIRST blogger in the myeloma universe (well, as far as I know), see http://www.myelomablog.com/…She’s a true pioneer and such an inspiration to all of us MM, SMM and MGUS folks. She has done and still does a lot of work for the myeloma community–fundraising, emotional and practical support and so on…mostly behind the scenes, without publicizing it. She’s also a very busy woman (like me, she has a day job and many other commitments…)…

On a personal level. As some of you know, back in 2007 Beth relentlessly dogged me to begin blogging about my experience with curcumin. I kept saying no, and she kept insisting, in her own sweet gentle way. I finally gave in…And today I can safely say that, without Beth, I probably wouldn’t have done any research on other non-toxic possible treatments for myeloma. Sure, I would have kept taking curcumin, but that’s about IT…Hmmm, now that’s a super scary thought, especially since I might never have learned about the importance of vitamin D etc etc etc. 

I owe a lot to my friend Beth. My life without this blog would have been incredibly different. Not in a good sense, either. Okay, I would undoubtedly have had MUCH more free time but…

Testing different non-toxic substances on myself AND writing/doing research for my blog has given me a huge purpose in life. HUGE! I’ve learned so much in the past four years–how to read virtually-impossible-to-comprehend scientific and medical studies, just to mention one thing. And I have also “met” so many fantastic people. Indeed, the readers I’ve actually met have become friends in real life, too…Sherlock, Paul, Diane…etc.

I cannot imagine life without my blog now…or even life without our growing MM, SMM and MGUS support group on Facebook (again, this group was Beth’s idea…I’m merely the, er, creator)…as much as I dislike Facebook, especially after watching “The Social Network”…ugggggggh!

Speaking of Facebook, I recently became a co-administrator of “Gammopatia Monoclonale MGUS,” an Italian group there, which is a huge honour for me…Besides, it’s fun to talk about myeloma-related matters in two languages. 🙂

And my blog has its very own Facebook page, which I try to keep updated (and FUN whenever possible, of course!).

Last but not least, I’m also a co-administrator of the MM Support patient listserv (have been for years, now, but this is the first time I’ve said so publicly). I don’t do much, truth be told, since I don’t have many (read: any!!!) technical abilities, but I’m there if I’m needed…

It’s a busy life…

Now, Kim, about that free lunch… 😉