Well, it’s my birthday today. 52. No, you’re right. It’s not an incredibly important birthday, as birthdays go, but I’ve always loved celebrating birthdays, and getting older hasn’t changed that feeling. Not even having myeloma has changed my opinion on birthdays, or “birdies,” as a good UK friend calls them…

On the contrary, I feel much more strongly about birthdays now…And so I passionately celebrate every birthday, every year that goes by with no conventional treatments, every year during which I’ve led a healthy, active, interesting, full life, every year I spend with Stefano and all my loved ones (furry ones included, of course), every year with a high quality of life…And, by the way, I feel like a 25-year-old…could it be from all those antioxidants I’m taking? 😉

Anyway, whatever happens, I’ve had a good run. And I plan to keep it that way for many years to come! Yes indeedie!

I wrote about having “had a good run” because earlier today, while I was going through and choosing the items on my computer desktop that I want to take with me to the U.S. (= unread studies, some work-related stuff…), I found an unfinished post written quite some time ago. It’s titled “Four years.” I didn’t need to open it to know what it contained.

Back in 2005, my first hematologist told my Stefano that, based on my test results, I would survive for only FOUR years after going through a conventional set of treatments, including an autologous stem cell transplant.

Stefano had been so upset that he’d erased this conversation until just recently, when he told me about it.

So.

Only four years, huh?

Well, almost EIGHT years have passed since that conversation took place, and I’m still going super strong…(no conventional treatments). 🙂

Ah, statistics!!! Useful for some things, of course…but ONLY to a point, as we all know by now…

Now for a brighter note…First thing this morning I got THE BEST PRESENT in the world from my wonderful, thoughtful sweetie. As I finished getting the cats’ breakfast together, Stefano came into the kitchen and handed me a sheet of paper with a drawing of, drum roll!!!, a pair of spectacular birdwatching binoculars! YAAAY!!! (I’ll explain why I got a drawing, not the real deal, in just a second…)

While we were on Skokholm Island, you see, I had tried someone’s binoculars and had been literally blown away. There were three peregrine falcon chicks on a distant ledge overlooking the sea…so far away that we could barely spot them (and our photos came out all fuzzy, in fact…bummer, that!). Well, with those binoculars, I could see the three chicks plainly, every single feather, as though they were only a few meters away from where I stood. Unbelievable…

Evidently, Stefano made a note of all that “binocular” enthusiasm and decided to splurge on a super duper pair of binoculars for my birthday. He couldn’t have come up with a better present. And what made it even more purrrrrfect is that I wasn’t expecting anything like it, since I’m well aware that a good pair of binoculars is incredibly expensive (and we really can’t afford anything like that right now!!!). Yeah, he’s really a fantastic guy, I know I know I know!!! 🙂 Anyway, the fantastic waterproof (etc. etc. etc.!) binoculars are going to be delivered to my parents’ house tomorrow, so I’ll be able to test them out while I’m in the States…

As it happens, there are heaps of birds on Cape Cod right now: http://goo.gl/QJOFq So hey, juvenile bald eagles, flamingos, and all the other Cape birds, watch your feathers, here I come!!! 🙂

Okay, I’m done now. I just finished putting a ton of unread studies on a memory stick that I will take with me tomorrow (I’m leaving tomorrow for Massachusetts), so at least I have really good intentions…

And, speaking of leaving tomorrow, I need to get off the computer right NOW.

I’ll be in touch here on the blog this Saturday or Sunday from Cape Cod, Massachusetts, U.S.A.!!! Ciao, everyone, and take good care of yourselves!!! 🙂

P.S. Cute cat patty-cake video: http://goo.gl/qepGT

I have quite a lot on my plate right now. For example: I still have to read the FULL fucoidan study (plus the other fucoidan study that Hans linked to…see his comment on the fucoidan post…One of those studies is available for free online…And yes, I have the other, above-mentioned one…), I’m working like a dog on two different projects (= paid work, gotta do it, need to pay for cat food 😉 ), AND, last but not least!!!, I am also getting ready to leave for the States (I’m leaving this Friday). No kidding! 

Yes, I’m about to get on yet another plane…so soon after our Skokholm adventure (oooh that reminds me: I need to post some of my Skokholm photos and amusing stories…). Anyway, to be honest, I have NEVER, in my life!, traveled this much in just ONE year…amazing. 

Well, it’s all my parents’ fault. 😉 I mean, last year they decided they were too creaky and feeble and old (= they’re 85…speaking of which, HAPPY BIRTHDAY, MOM, I LOVE YOUUUUUUU!!!!!! Yes, today is my Mom’s birthday!!!) to get on a plane and fly across the ocean to spend the summer with us here in Italy. So now I’m the one doing all the…flying! 🙂 

This summer I have an extra reason for visiting them. They’re having cataract surgery done almost as soon as I arrive, and I need to be there to cook and clean and do laundry, put all the necessary eye drops in their eyes, make sure that they don’t bend over or make any “forbidden” movements and whatever else is needed during the short period of recovery from this procedure…

Stefano is going to stay here in Florence with our six cats, then he’s going to join me and my parents in the U.S. in mid August, which is when a trusted friend is moving into our house, mainly to take care of the cats. This all took a bit of planning, since we would never ever leave our kitties with someone we didn’t trust…but…we made it in the end! Stefano and I will be returning to Florence together at the end of August. 

By the way, I will be online and keeping track of research items while I’m in the States. Just give me a few days to get over jet lagzzzzzz! 😉 I’ll also be taking some scientific studies with me…the ones that I won’t be able to comment on before I leave, that is.

To end on a beautiful “awwwww” note, here are a few of the photos I took of some of our cats yesterday, while we were in various stages of cleaning one of the rooms in our house…The kitties really love to help us on these occasions…yep…but, as you can see, then they get all tired out, poor sweets!  🙂

P.S. The only cat who is “missing” here is our eldest, Puzzola, 12 years old. When she realized that we had enough furry helpers, she went back to sleep upstairs…Hehe. By the way, if you want to know their names, just hover over the photo with your mouse…

This morning a blog reader, thanks!, sent me the following quotes. Some are quite amusant! Enjoy! 🙂

• “He had delusions of adequacy.” -Walter Kerr.
• “He has all the virtues I dislike and none of the vices I admire.” -Winston Churchill
• “I have never killed a man, but I have read many obituaries with great pleasure.” Clarence Darrow
• “He has never been known to use a word that might send a reader to the dictionary.” -William Faulkner (about Ernest Hemingway).
• “Thank you for sending me a copy of your book; I’ll waste no time reading it.” -Moses Hadas
• “I didn’t attend the funeral, but I sent a nice letter saying I approved of it.” -Mark Twain
• “He has no enemies, but is intensely disliked by his friends.” -Oscar Wilde
• “I am enclosing two tickets to the first night of my new play; bring a friend, if you have one.” -George Bernard Shaw to Winston Churchill
• “Cannot possibly attend first night, will attend second … if there is one.” – Winston Churchill, in response.
• “I feel so miserable without you; it’s almost like having you here.” -Stephen Bishop
• “He is a self-made man and worships his creator.” -John Bright
• “I’ve just learned about his illness. Let’s hope it’s nothing trivial.” -Irvin S. Cobb
• “He is not only dull himself; he is the cause of dullness in others.” -Samuel Johnson

One of the biggest problems in conventional myeloma treatment is called MRD ( = Minimum Residual Disease). What happens is that no matter what we do, no matter how much chemo we throw at our myeloma cells, no matter how many stem cells transplants we have, we won’t be able to eradicate myeloma completely. Some of these pesky cells are in fact able to develop a resistance to, and thus escape, the killing effects of any current myeloma treatment. These are the chemoresistant baddies, the really tough guys in the myeloma neighborhood, the Voldemorts of myeloma. The ones that can’t be killed off…

So today’s question is: is there a way we might be able to get rid of MRD once and for all? The answer is: possibly.  

This morning, while I was checking my daily alerts, I found an interesting tidbit: http://goo.gl/oShVH Scroll down the page, and you will find a brief mention of something called fucoidan, a polysaccharide found in brown seaweed. What I read intrigued me. 

I immediately dashed to PubMed to see if fucoidan had been studied in connection to myeloma. Yes, it has. Here is the abstract of a fascinating study published in January 2013: http://goo.gl/lZ9U3

In a nutshell, a group of Chinese researchers discovered that fucoidan can PREVENT myeloma cells from avoiding the toxic effects of chemotherapy. When fucoidan was added to a drug used in myeloma treatment, cytarabine, the latter was able to reach and destroy ALL of the myeloma cells. All of them. 

No more MRD. 

Hmmm, I wonder if fucoidan would work with other, commonly-used myeloma drugs, too. With that in mind, I suggest that we add fucoidan to our list of things to bring up with our doctors and with our myeloma organizations (wouldn’t it be great if the IMF or the MMRF funded some of this new, promising research???). 

There is more good news. Even though the full fucoidan study isn’t available for free online, you can scroll down and look at the Figures. Figure 2 has an interesting bit of news: the researchers found that fucoidan inhibits the growth of RPMI8226 and U266 cells (those are two important myeloma cells lines often used in research studies).

And the abstract tells us that fucoidan decreases the levels of CXCR4, MMP9 and RHoC expression in our myeloma cells. Very good news indeed. 

This means that we all (that is, even those of us who aren’t doing any chemo) might be well advised to including brown seaweed into our diet…or even a fucoidan supplement. I’m seriously considering it. But I need to do some more research, when I can find the time…

In the meantime, I’d like to ask you all a question: is anyone already taking fucoidan? If so, with what results? It would be super duper to have some independent (ONLY!) feedback on this issue. 

Thanks! 🙂

UPDATE. I just got a note from a blog reader who took a 500 mg kelp supplement many years ago. Well, it had a very negative effect on her thyroid function, which was apparently caused by the iodine AND by an allergy to seafood (the two seem to be connected…that is, if you are allergic to seafood, you are sensitive to iodine, too). Therefore, if you decide to begin taking fucoidan, do make sure it’s safe for YOU! And, in any case, start with a small dose…

A team of Chinese researchers recently designed and tested a series of hybrid molecules based on the structures of thalidomide and curcumin, discovering that two of them killed myeloma cells. The two hybrids turned out to be significantly stronger than either compound on its own…

Here is the link to the abstract: http://goo.gl/uagWw If you register to the website, you will be able to download and read the entire study for free. I registered, of course, but in so doing I agreed not to use any of the copyrighted material in public, so I cannot and will not comment on the full text here.

For those who don’t want to bother registering, here’s a very brief, easy-to-understand description of the study, including a few interesting comments: http://goo.gl/QAQwN

As I’ve been writing for years now (here on the blog), I’m absolutely 100% convinced that THE ONLY WAY we’re going to find a CURE for myeloma (and other cancers, too) is to COMBINE toxic, conventional drugs with non-toxic, “non-conventional” substances. Conventional stuff alone is simply not going to work…yes, sure, it may work for a while, perhaps even a long while in a few happy cases, but in the long run it will fail, when the myeloma cells become resistant…

But by now, hundreds of scientific studies have shown that curcumin can boost the anti-myeloma properties of the toxic drugs, while protecting our healthy cells.  Yet some doctors still roll their eyes at the mere mention of the word “curcumin.” And then they bring up the lack of clinical trials.

Ah yes. Clinical trials. I don’t have much faith in them…not anymore. Why? Well, let’s see, my disenchantment with clinical trial results officially began after I watched Dr. Ben Goldacre’s TED talk on so-called “evidence-based medicine” (see my March 11 2013 post, or just click here: http://goo.gl/mshuh. After about 10 minutes, he mentions Tamiflu, by the way…oooh I am so glad I never took that stuff!).

Shocking. Absolutely shocking. Missing data, careful selection of patients so as to obtain a favorable trial outcome, big pharma-sponsored trials that are more likely to report flattering results compared to independently-funded trials, data that is systematically withheld from doctors and patients, etc. Believe me…it’s a long list!

If you have a bit of time, I urge you to read the excerpts of Dr. Goldacre’s book (titled “Bad Pharma: How Drug Companies Mislead Doctors and Harm Patients”) published in the Scientific American in February of this year: http://goo.gl/2pOEj

Depressing, huh? Well, no, not necessarily. There are a few things we can do to change this situation…

First and foremost, we can put pressure on our doctors, showing them our research (or mine!), telling them that we are taking some scientifically-backed, non-toxic supplements, etc. 

And we can also put pressure on our myeloma organizations, demanding that they STOP being so heavily and openly (= simply unacceptable!!!) involved and endorsed by the greedy pharmaceutical industry and that they begin funding promising, anti-myeloma, “alternative”, non-toxic substance-testing projects…Terry Golombick’s work in Australia, for example! 

Actually, what I just wrote, the part about big pharma, made the following scenario/question pop into my mind (hey, it’s all the fault of our recent trip to Skokholm Island 😉 ): how many chances does a puffin chick have of surviving when it tries to leave its burrow that is being patrolled by a hungry herring gull (= big pharma)? Not many, that’s for sure. But that doesn’t prevent the chick from trying, right? 

Well, we don’t want to be stuck in our myeloma burrows forever, do we? 

No, we don’t. And that is why we MUST raise our voices. Actually, this (= the voice-raising, that is) has been going on for quite some time. For years, in fact, I have been receiving reports (just this morning I got another one, a positive report, yaaay!) of blog readers talking to their doctors about curcumin, giving them links to the curcumin-myeloma studies…and receiving favorable feedback…

It’s a start…

Yes, a good start. 🙂

Okay, enough. And now, for a bit of comic relief, here are a few excerpts from a sad cat’s video-diary that I watched this morning (a few of these made me laugh out loud…): http://goo.gl/egTK5

Stefano and I returned to Italy from the United Kingdom yesterday afternoon.

Words escape me right at the moment, for no words can adequately describe or express how we felt/feel about the magical island where we lived for four days and four nights. All I can say is that Skokholm Island was an unforgettable experience…and that returning to civilization has been really hard…

When, months ago, I told my parents and friends about where we planned to go in June, they thought we’d gone completely bonkers. Who (in their right mind, that is!) would want to spend any time at all on a tiny, cold and windy island off the coast of Wales…with compost toilets (I’ll tell you about those another day, hehe 😉 ), no showers, no Internet, no phones…a place that is frequently isolated from the rest of the world due to the rough seas and strong winds that prevent the passenger boat from reaching the island? 

Well, we did. 🙂

And now we can’t wait to go back…next year!!! In the meantime, here are a couple of photos, chosen rather quickly among the three hundred zillion photos I took last week. Speaking of photos…I was horrified to discover that, for some reason, most of the photos I took on Skokholm seem to be simply…terrible. These two puffin photos aren’t too bad…and in the next few days I’ll see if I can “salvage” a few more from my huge crop…perhaps a few of those I took of the gannets on Grassholm Island…

Anyway, I have a zillion things to do right now, so I must dash off, but…more soon!!! Ciao!!! 🙂

Well, our departure date for Wales (UK) has finally sneaked up on us. Stefano and I planned this trip months ago…We’re taking a advantage of a long holiday weekend to which we’ve attached some holiday time… 

I must confess that, with all the last-minute, urgent stuff (read: workworkwork!!!) that I’ve had to do in the past week or so, I ALMOST forgot to write a quick post for the blog. Gee, I must be TIRED!!! 😉 So here I am, at 11 PM at nightzzzz, writing this post…after setting my alarm clock for 5 AM tomorrowzzzzzz…

We’re going to Skokholm Island, which is Skomer Island’s sister island. Skomer hosts the biggest puffin colony in southern Britain AND a third of the world’s population of Manx Shearwaters during their breeding season. And, as you may recall, Stefano and I are hopping mad about puffins!!! 

We’ve been to Skomer a couple of times, but never to Skokholm, which has opened to the public only in the past couple of years and has more “primitive” living accommodations…no showers, etc. No Internet and no phone service, either. No technology…at all! And…no work!!!

I can’t wait! 🙂

Anyway, I wanted to write a quick thingy for the blog, just to explain that I’ll be gone until the end of the month.

In July, things should cool down, though, and I should be able to finish a couple of posts. Mamma mia! Sorry about that, but of course I have to choose paid work over writing for the blog, as much as I love being here with you…

Soooo, please take care, everyone! Ciao! 🙂

It’s finally HOT in Florence…hot enough to use my ceiling fan in the study.

A couple of days ago I managed to take photos of the first time Prezzemolo (who is about a year old now, I guess) set eyes on a moving ceiling fan.

(Too bad about the flash reflection in his left eye, but the flash-less photos I took came out a bit fuzzy.) 

Yes, I know…

He’s adorable!

🙂

A blog reader alerted me to a Japanese Alzheimer’s case study published in October 2012. Here is the link to the abstract in PubMed: http://goo.gl/66V82. I hadn’t come across it, since I don’t really monitor curcumin for anything other than myeloma, MGUS or SMM. But I thought it was extreeeeeeeeemely interesting and decided to post about it today.

The full study, available for free online (just click here: http://goo.gl/mX5OQ), tells us that turmeric, not curcumin, was used in this study. The three Alzheimer’s patients involved in the study were given a daily dose of 764 mg of turmeric (= containing to 100 mg of curcumin, according to the authors). And even on such a tiny dose (of TURMERIC, to boot), the spice had a huge impact on their quality of life (QOL)…nothing short of amazing, in fact…For example, after a year of the turmeric treatment, they began to recognize family members…One woman started singing and laughing and knitting again…And so on.

You can read the patients’ stories in the full study. Impressive!

I do have a question, though: I wonder how much these (and other) patients would improve if they were given a higher dose of straight curcumin (not turmeric, i.e.)? Now that would be super interesting to know!!!

***Note: you will come across a few typos and mistakes in the full study. There is a huge one, for example, at the end of the Discussion part, where the authors write “impair” instead of “improve.” Obviously, they meant to write that curcumin improves cognitive function, not that it impairs it! However, in spite of its occasional creative use of the English language, the study is clear enough… 🙂

I was going to post something about our weekend trip to the region to Umbria…with photos, glorious photos of beautiful places, but I just couldn’t pretend that everything is okay. No. It just isn’t right. 

When Stefano and I got home yesterday, I got some very bad news. Bad news for the myeloma community/family. Bad BAD news, period. But I wasn’t sure what to do with it, to be honest…should I post it here on the blog or not? What would she, a very private person, have wanted me to do? Well, this morning I decided to go ahead and post a tiny tribute…a tribute to my friend…a tribute to Hanna. 

I met Hanna via my blog a number of years ago. She wrote me a glowing fan message, and from that moment we began corresponding and building a friendship. We never managed to meet in real life (she lives in Canada, I live in Italy), but we found that we had many things in common…reading, traveling, listening to classical music and also…a rather wacky sense of humor (okay, so mine is wackier!!!), and so I’d frequently forward to her the funny messages and links that you send to me and that keep my immune system happy…It kept hers happy, too…

But Hanna and I would also discuss things of a more serious nature…mainly natural, non-toxic myeloma treatments. And I often turned to her for advice, even before she became a co-administrator of our Facebook MM, MGUS and SMM support group. Wise, thoughtful Hanna always found the perfect solution to any issue…

Well, three weeks ago, after much worry on my part (she’d essentially “disappeared” and wasn’t answering my messages…I just knew something was wrong…), I and a few select others in the above-mentioned Facebook support group received a brief message from her, informing us that she’d decided to stop all treatments (conventional, yes) and go home to be with her family and to enjoy her garden. We all knew what that meant…

She didn’t answer any further communications. 

And yesterday, when Stefano and I got home from Umbria, I read a message from her husband informing me (and the same few, as above) that she had died on June 7th. 

On Saturday Stefano and I heard this song, “Over the valley,” while having a quick bite to eat in a wine bar in the town of Assisi. Such a pretty little song…I think Hanna would have liked it…and so I dedicate it to her today. [youtuber youtube=’http://www.youtube.com/watch?v=WO2AIpZAunA’]

Oh Hanna dear, I’m going to miss you so much…

Ciao, mia cara…