It’s not a myeloma anniversary, although I have now fully entered my 10th year of living with smoldering myeloma. No, today’s a HAPPY day. It’s our 16th wedding anniversary.

It’s hard to put feelings into words. I’m not a poet, just someone who deeply loves her life partner and best friend. And I don’t want to get all mushy, either.

But I can and will say that the years with Stefano have been the happiest of my life, in spite of my SMM diagnosis (I was diagnosed with MGUS the year we were married…1999). And I know it’s been the same for him. Together we’ve been on many adventures and have discovered a mutual love for photography and birdwatching, just to name a couple of things.

And to think that we might never have met, if I’d accepted a teaching job at a well known Canadian university (offered to me even before I had my Ph.D., imagine that?, a job that I turned down, imagine that, too!!!, for no good reason at the time…a gut feeling, perhaps? Who knows?)…

But meet we did…at a dinner organized for that very purpose (as we later discovered!) by a dear, mutual friend here in Florence. A very lucky evening for both of us…

Here’s to 16 more (and more and more!!!), Stefano! 🙂 Ti amo tantissimo, moro!

(Was that too mushy?)

This is the title of a Scientific American article, titled “Changing our DNA through mind control?”, that I read months ago and put away for when I had a bit of time/desire to do some research. Here’s the link to the article: http://goo.gl/TAkzK6

The gist is that mindfulness meditation (about which I’ve written a few posts in the past) is, and I quote, “associated with preserved telomere length. Telomeres are stretches of DNA that cap our chromosomes and help prevent chromosomal deterioration — biology professors often liken them to the plastic tips on shoelaces. Shortened telomeres aren’t known to cause a specific disease per se, but they do whither with age and are shorter in people with cancer, diabetes, heart disease and high stress levels. We want our telomeres intact.” (P.S. “whither with age?” Harrumph…!!!) 

Well, in spite of its unfortunate typo, this SA article inspired me to put on my research cap, after I discovered that telomeres are strongly involved in myeloma progression–short telomeres, to be more specific. So let’s have a look at some of the studies I’ve read or glanced at in PubMed in the past few days and try to figure out what’s going on…

A 2012 Spanish study published in the Journal of Cellular and Molecular Medicine suggests that MM cells maintain short telomeres for proliferation purposes: http://goo.gl/yhpsaj.

Excerpt: maintaining short telomeres is “a mechanism contributing to MM tumour cells expansion in the bone marrow.” These crappy malignant cells of ours manage to keep their telomeres right above the critical level, that is, the level under which they would eventually have to die. In other words, MM cells use short telomeres to stay alive as long as possible, thus avoiding the normal process of apoptosis, or cell death. As we know by now (I’ve written a bunch of posts about apoptosis…use the handy “Search” box to find ’em), apoptosis occurs on a regular basis in normal cells–as I understand it, their telomeres start getting shorter and shorter, and eventually the cells stop reproducing and die off…But myeloma cells want to live forever, so they have “devised” a way of keeping their telomeres above the critical “too short” level…Quite an extraordinary accomplishment, actually, when you think about it…

And it is in this study, ladies and gentlemen!, where I first read that one of the differences between MGUS and MM is that telomeres are shorter in MM patients. 

There is more. And I quote, “in MM high telomerase activity and short telomere length defined a subgroup of patients with poor prognosis and shorter mean survival.”

A Translational Oncology study from 2013 depicts an even scarier scenario, depicting vile interactions between telomeres and myeloma cells: http://goo.gl/vGB2dD These researchers carried out a three-dimensional (3D) analysis of the telomeres obtained from blood and bone marrow samples of MGUS and MM patients, including relapsed MM patients…mostly in the IgG group. It’s an important study for us because it links shorter telomeres to progression from MGUS to MM.

Excerpt (my highlight): “This study showed changes in 3D nuclear architecture during disease progression from MGUS to MM, based on our findings of increased telomere attrition, resulting in shorter telomeres in MM, as well as in MMrel, compared to MGUS.” So this study reaches the same conclusion as the above-mentioned Spanish study.

Now, I don’t know if you are thinking of the same questions that popped into my mind as I was reading and trying to figure out all this stuff, but anyway, here’s one of ’em: wait a sec, if short telomeres are bad, would’t it be worse to have long ones, which theoretically have a longer life span?

I got my answer today (quelle coincidence!) in this Cancer Compass alert: http://goo.gl/VhljLV It’s easy to read, btw, so do have a look. Basically, it reports on a newly published study showing that “a pattern of change in DNA that may signal the development of cancer long before a standard diagnosis can be made.” And, drum roll, this pattern concerns our very own telomeres. Apparently, the “telomeres belonging to future cancer patients may shorten in length to such a degree that they resemble telomeres belonging to people 15 years older.” Bingo.

Connections. In order to stop progression, we need to have longer telomeres.

Okay, I think we’re done with telomeres for now. So let’s have a quick look at telomerase, which is also important in myeloma. In a nutshell, telomerase is an enzyme that helps prevent the shortening of telomeres, thus preventing a cell from aging. Easy peasy so far…

But what does this really mean for us? Well, the above-mentioned 2012 Spanish study (and there are others, not cited here), suggests that an increase in telomerase activity (or TA) helps MM cells survive. I had a look at a whole bunch of PubMed studies showing that MM cells have a hard time proliferating when telomerase activity is inhibited.

So, simply put: inhibition of TA is good.

In conclusion, we want longer telomeres and less TA activity in our MM cells.

And here’s the answer to another question that popped into my mind: yes, yes, yes, among the million other things it does, curcumin also inhibits telomerase activity. And it also apparently helps preserve telomere length (!), possibly even improve it. Wowsie.

According to this 2006 study, “curcumin inhibits telomerase activity in a dose and time-dependent manner“: http://goo.gl/Tcz5HJ. It inhibits TA, thus shortening telomeres, which means, as we have seen before, that the cancer cell stops reproducing itself and dies. I think it’s obvious, but I suppose I should point out that in this case it’s good for the telomeres to be shortened, because it means they are at death’s door. The study, carried out on a leukemia cell line, also points out that the existing synthetic telomerase inhibitors “are always highly toxic,” something that, as we well know, curcumin is not.

Another study, published in 2015, confirms that curcumin diminishes TA, leading to death of the cancer cell: http://goo.gl/eX5nHH In PuBMed there are currently 34 studies on the impact of curcumin on telomerase. Considering the fact that curcumin won’t make piles of money for anyone, that’s quite a good number, methinks.

As for other naturally-derived substances and their possible effect on telomere length and telomerase, well, I need more time to look into that…

A final note: I also read that stress is linked to shorter telomeres. And so is lifestyle. And those are my final serious thoughts for today! This afternoon I’m going off to play cards with my friends… 🙂

My most recent blood test results showed a slight drop in my hemoglobin, hematocrit and red blood cell count. I’m not worried yet, since the IMF Patient’s handbook talks about <10 g/dL, and I’m nowhere near that. At any rate, in order to avoid a more worrisome drop (prevention prevention prevention!), I’ve been gathering information on how to give these three numbers a boost. And, since I’ve received a few queries on this topic, I thought I’d write a post about my findings thus far. 

In addition to increasing our intake of iron-rich foods (red meat, beetroots, etc.), there are a few tips out there that I’d like to highlight. You can find them here, by the way (and on many other websites, too): http://goo.gl/NlW0ht

–Withania somnifera, also known as ashwagandha, has been used in Ayurvedic Medicine for ages and ages to treat anemia caused by iron deficiency. And ashwagandha just happens to be an anti-myeloma herb that I’ve tested a couple of times in the past with a certain success, though I hadn’t considered its effect on my HGB…And looking at my test results, which I did earlier today, didn’t help. I mean, back then my HGB was normal, and on ashwagandha it stayed within the normal range. At any rate, I’ve begun taking ashwagandha again…If it can push my HGB back into the normal range, I’ll be the happiest girl in town!!!

–Decrease our intake of gluten. I didn’t know this until today, but apparently gluten-rich foods can actually cause anemia. Reducing or eliminating gluten can therefore increase hemoglobin levels. The studies I’ve seen so far seem to support this…

–Blackstrap molasses. If only it tasted like melted chocolate…

–Increase our intake of vitamin B12 and folic acid. I had both tested, and the results are in the normal range, BUT on the low side, especially the former.

In sum, can we boost our hemoglobin levels? Hard to say, with myeloma. Mine is an attempt. But I’ve done it before, so I’m hopeful this time, too. As always, the eternal optimist! 🙂

I’d like to end the post with this old Italian saying: “il vino fa buon sangue.” Roughly translated, it means “wine makes good blood.” Well, as far as hemoglobin goes, wine turns out to be on the “no no no!” list. Bummer. In the past few months, you see, I’ve been enjoying about a quarter of a glass of red wine with supper…I guess I’ll have to stop doing that now. 🙁 Oh well…

P.S. This is a recent photo of our youngest cat, Prezzemolo (which means “parsley” in Italian), whom we got a couple of years ago at a local cat shelter. Isn’t he handsome??? Awwww…my boy!

This morning I came across an intriguing article published recently in “The Scientist”: http://goo.gl/Hl4sCa

I’ve written a couple of posts about circadian rhythms before (for a reminder, see http://margaret.healthblogs.org/antioxidants-and-chemotherapy/biological-clock-and-bioavailabilty/) but haven’t thought about them in a while, I must confess. Well, I’m thinking about them today, that’s for sure. I mean, cancer cells appear to be more susceptible to chemotherapy when administered at certain times of day…And this new study tells us that the same occurs when cancer cells* are exposed to curcumin. How cool is that?

Excerpt: “…curcumin can activate a gene important to regulating the circadian clock…” Did you know that? I don’t think I did…Food for thought!

Here’s the link to the abstract on which the article is based. Incidentally, it was presented a couple of weeks ago at the annual meeting of the American Association for Cancer Research, so it’s hot off the press: http://goo.gl/gTB6t8 Warning: it’s quite technical!!!

Excerpt: “These results indicate, for the first time, that efficacy of curcumin is under circadian control and that the rhythm is lost at higher curcumin concentrations.” Now, if I have interpreted this sentence correctly, it means that we might be able to take less curcumin if we can figure out our circadian rhythm. Wouldn’t that be absolutely fantastique? 🙂

The main reason I take my curcumin in the evening, before supper, is because of all the water I have to drink in order to swallow all the capsules, which means that if I’m going out and about during the day, I might be spending a lot of my time looking for a bathroom…But if I know I’m going to be at home, I do try to split my dose (lunch and supper).

But what if my best curcumin-taking time of day were in the morning, not the afternoon or evening?

I’m seriously thinking about changing to the morning now…just to see what happens…

(* The tests in this new study were carried out on rat glioma cells–the C6 glioma cells mentioned in the abstract–not human cancer cells…So we need to look at the circadian rhythm of human cancer cells treated with curcumin…though I’d bet almost anything that we’d have similar results…)

I got my test results yesterday, several days earlier than expected. I’m impressed. That was FAST! It took only five days…

Let’s see. The thing that concerns me the most is that my hemoglobin, hematocrit, and red blood cell count are still slightly below the normal range. Just slightly, so no huge worries. But I can’t just sit back and ignore it. After all, anemia is the “A” in CRAB, so bringing those numbers UP will be my main concern in the next few months, years, decades, centuries…

My white blood cells have also slipped under the normal range, again just slightly (my result is 4.38 instead of the 4.4 it should be). But they’ve been lower in the past, so again, no worries.

Okay, now for the rest. First, the bad stuff:

• ESR has gone up a bit since my November 2014 tests: it’s 59 mm, was 46. Normal range is 2-25 mm. BUT: it’s been in the 90s in the past, so no big deal.
• Calcium has gone up slightly, from 8.9 to 9.1. It’s been as high as 9.4, though, and in any case it’s within the normal range.
• Uric acid: this has gone slightly over the normal range, so it must be monitored.
• I have “insufficient” levels of vitamin D! Ouch. Well, I stopped taking it about a week before my tests, so what this result tells me is that I need to be taking it ALWAYS. I started again this morning.
• Free light chains (serum): They are up again. The seesaw effect. But not to a worrisome level. They’ve been MUCH higher in the past but since 2013 seemed to have settled down, except for a bit of seesawing. So, again, no worries.

Good stuff:

• Creatinine: stable as a rock, slightly lower than it was in November; way within the normal range.
• Creatinine clearance: better than last tests: 103 instead of 145 (the high end of the range is 151 mm/min). Excellent.
• 24-hour creatinine is also better than it was in November.
• LDH has gone from 210 to 175, which is lovely. Normal range: <280.
• Total protein: stable.
• B2M, down a notch compared to my November tests, therefore stable.
• CRP: same as it was in November. Perfect.
• No Bence Jones protein, as always.
• Total IgG: it’s still high, but luckily the trend is a downward one. It has been creeping slowly back down with every test…
• My other Igs are stable, even though practically nonexistent. I’m used to that.
• M-spike has also gone down quite a bit, as has the monoclonal component. Very good.
• Parathyroid: lower than previous tests, so that’s good. Anyway, it’s way within the normal range, where it has been since 2013, in fact.
• Liver function (ALT, AST, GGT) is perfect, as always.
• Ferritin and iron levels are in the normal range. In fact, my ferritin is up a bit compared to November.

I’m seeing my doctor next week, so if I have anything to add to what I’ve written here, I will do so.

Well, it could have been worse, and it could have been better. But, as the lab doctor wrote on my test results, there are NO significant variations compared to previous tests. And that is always good at this stage…!!! 🙂

I have already published a post about the dangers that my beloved bird reserve, the Parco della Piana, located in the province of Florence, is going to face at some point in the future…not sure when…but it’s going to happen, almost certainly. So I won’t repeat what I wrote back in September on this extremely sad topic (see: http://margaret.healthblogs.org/2014/09/08/a-planned-destruction-my-beloved-parco-della-piana/).

I want to concentrate instead on the time Stefano and I spent photographing birds in this reserve together with our British photographer friend (I’ve written about him in previous posts) a few weeks ago.

Mainly, I want to publish some of the photos I took. These are not the best in the world, far from it!, but they will give you an idea of what an extraordinary place this bird reserve is…and how terribly AWFUL it would be to lose it…

I hope you enjoy the photos!

I certainly enjoyed taking them… 🙂

P.S. As usual, you can hover over the photos to get a description, and you can make some of the photos bigger, too.

This morning I had my blood tests. Results in early May. I’ll post them here, of course. Good or bad, whatever.

I used to be very apprehensive about tests and results…but years of all this have helped lessen the pre-testing anxiety (and the “what if!!!” syndrome that we all have at one point or another). Reading a funny book, such as “Anguished English,” while waiting for my name to be called at the lab is also a big help… 🙂

Today I came across Dr. Durie’s recent blog post on the subject of eating and drinking. Among other things, I’m happy that he speaks out against Monsanto and its awful pesticide Roundup (just to mention one Monsanto abomination!). And so on.

A good, interesting read: http://goo.gl/mZfFtl And it reminds me–I still have to read “Grain brain”!

Knowledge IS power. I couldn’t agree more with Dr. Durie (whom I met in person at a patient-doctor meeting that was held several years ago right here in Florence, incidentally…).

I’m having my blood drawn day after tomorrow, which means that tomorrow I’ll be doing the 24-hour urine collection (joy!) to determine if I have any Bence-Jones protein in my urine…it’s always been negative, so…fingers crossed!

In the past few weeks–since the beginning of April, in fact–I haven’t given much thought to my smoldering myeloma. I’ve been too busy…mostly too busy having fun, which is always a good thing!

But then, last week, as I mentioned in a recent post, I wasn’t able to access my blog because of some mysterious computer glitch. Stefano worked on the problem and fixed it, but that took a few days. And during the brief time that I was locked out of my blog, I got to thinking about how much it–my blog–has meant/means to me.

A lot. A whole big lot. For many reasons…

And now for a series of “ifs.” But these aren’t the regretful sort of “ifs,” as you will see…

• If I hadn’t been diagnosed with MGUS (1999), then with smoldering myeloma (2005)…
• if I hadn’t come across the MD Anderson curcumin-myeloma trial…
• if I hadn’t decided to take curcumin (and believe me, back in 2006 things were very different: most people/MM patients/doctors believed I was rather nutty or perhaps VERY nutty…but now look…many of our doctors are actually recommending that their patients take curcumin! Ah yes, we’ve certainly come a long way…)…
• if I hadn’t followed a friend’s advice and created this blog…

…I’d be a different person today. I mean, sure, I’d be the same old Margaret that I was in my “previous” life, my life before myeloma, that is…But…yes…different…

For one thing, I wouldn’t have found out that I can actually WRITE (thanks, Dad!).

For another, I wouldn’t have met so many different, generous, kind, brave people (you, my blog readers). By now I have met a whole bunch of blog readers…and I have many new friends who live in different countries, from Italy to the U.S.A…

I have experienced only generosity and kindness from my blog readers, and so I take this opportunity to thank you all…from the heart! Grazie! 🙂

I will never forget, e.g., the day I met a British blog reader who said that Stefano and I could stay in her London apartment anytime we wanted (we haven’t taken her up on her offer yet, but we might!). Or the day we got three different offers from three different blog readers to spend a week with them in New York City. How splendid is all that?

But the first to invite us into his home and into his life was our much beloved British photographer friend (the guy who just came to Tuscany to visit us)…We both love him to bits and always enjoy getting together with him and his family…sweet, wonderful, interesting people.

Okay, let’s get back to the point of this post: in the past couple of days I’ve been thinking that no matter how my test results turn out, I’ve had a really great run with curcumin and a few other naturally-derived, nontoxic extracts. No, I’m not worried about them…these are just considerations that sometimes pop into my brain before I go have blood tests…

More considerations…In early 2006, my hematologist here in Florence told my husband that I could live for five years if I had chemo and an autologous stem cell transplant. Five years??? That’s IT??? Sheesh.

Furthermore, based on my test results, in the autumn of 2005 a world-famous U.S. hematologist told me that I’d be progressing to active MM in five year’s time ( = 2010, that is). 

Didn’t happen.

Well, I’ve clearly beaten the statistics. Without chemo or transplants, to boot. And anyway, you know my thoughts on statistics…pfui!

In all these year–since my SMM diagnosis in 2005, that is–apart from a few episodes with the flu AND in spite of my low immune defenses, I’ve been incredibly healthy and have led a happy, active life. In fact, I just got back from driving around with a friend, photographing all the wisteria in bloom that we could find in this area of Florence. All the photos were taken on the way to the hilltop town of Fiesole, incidentally.

Living with smoldering myeloma was not my choice, of course. But I can’t ignore the fact that my SMM diagnosis has made me look at life very differently. It has made me slow down and appreciate and enjoy even the smallest things, things that I might not have done in the pre-MM period…like going off to photograph wisteria in full bloom with a friend. My priorities have definitely changed…

And, as a result, life is good…

Oh dear, look at the time! I really must get off the computer and find the 24-hour urine container for tomorrow. Then I need to give Piccolo and Puzzola (my two eldest cats) their pills. Off I go! Take care, everyone, and enjoy the lovely spring blooms! Ciaooooo! 🙂

As I mentioned, a couple of weekends ago Stefano and I accompanied a close friend, a photographer from the UK, on a weekend tour of Val d’Orcia, a lovely part of southern Tuscany AND World Heritage Site. 

We had a wonderful, relaxing time.

We spent Saturday night in a 4-star hotel in San Quirico d’Orcia, a lovely little town we’d never visited before, where we were “upgraded” to two deluxe double rooms for the same (bargain!) price we’d found online. What a super deal!

The hotel staff were fantastic, very helpful, and the meals we had were absolutely first-rate…and cheap, too, compared to most restaurants you find in Florence.

So, if you decide to visit lovely Val d’Orcia, get in touch with me. Now I have a few more pointers inside my “can’t-miss-in-southern-Tuscany” bag! 😉

The only thing is, I’d wait until May or June…or perhaps even late fall or winter. This is an in-between season (which is why we got the hotel deal, in fact)…but, as you can see, Val d’Orcia is still drop dead gorgeous…

And yes, no doubt about it, the theme in Val d’Orcia is…CYPRESSES! 🙂

Again, hover over the photos to get a description of them…and/or click on them to get an enlargement.

This is one of the FUNNIEST videos I have watched in recent times. Hilarious. I laughed myself sick. And by the way, when I get going, my laughter sounds a lot like this guy’s… Anyway, enjoy! 😀