Monthly Archives: November 2013

November test results

Well, let’s see. There’s good news, and there’s bad news. Compared to my last set of tests, done months ago, my red cells, hemoglobin and hematocrit have slipped slightly below the normal range. Just a shade, so I’m not overly concerned. I can bring those numbers up with diet…

Let’s continue with the bad news.

  1. My m-spike: it’s gone over 3 for the first time since 2011. Bummer, that. But I’ve seen it go up, then down, so again, I’m not overly worried. In my last set of tests, e.g., my m-spike was lower compared to previous tests. I therefore expect it to go down with my next set.
  2. Total protein is also up: 10.7. It’s been as high as 9.9, but this is the highest it’s ever been. This number HAS TO COME DOWN. Period.
  3. Gamma globulins are up a bit, too. Okay, Mr. Gamma, I’m on to you…you’d better watch out!!!
  4. So is my parathyroid…up, just a wee bit. This means that I need to get back on my daily vitamin D (I stopped a week before the tests, following my family doctor’s advice, which was to stop taking it a week before getting tested).

Ah, but there’s a bunch of GOOD stuff, too! And here’s a bit of advice that has helped me tremendously in the past 8 years plus: when you go over your test results, try NOT to focus on one or even two bad numbers. Look at the WHOLE picture. Things might not be as bad as you think…Okay, here goes:

  1. Beta-2 microglobulin: no change. :)
  2. C-reactive protein: it’s LOWER than it was last time (it’s gone down a whopping .20, which doesn’t sound like much, but consider that the normal range is as follows: “less than .50“!!! Is that a 40% drop? Something like that…I’m not a wiz with numbers…
  3. IgA: slightly up, from 6 to 7 (yes, I know, it’s just a smidgen, but even the slightest change in the right direction is more than welcome!!!). No change in IgM, but, as long as it’s staying put, I’m happy.
  4. Ferritin (= iron stores) is up from 31 to 39. My serum iron is slightly lower than it was months ago, but still way within the normal range.
  5. Creatinine (serum) and creatinine clearance (both serum AND urine) are both fine. In fact, all of my creatinines (they ran a bunch of creatinine-connected tests this time) are fine. :)
  6. Freelite chains. They’re still high (but then, they’ve always been high, so I wasn’t expecting a miracle), but they have improved A LOT compared to last time. Big move in the right direction.
  7. No Bence Jones. As usual.
  8. UPDATED on November 30: serum calcium is also way within the normal range.

Now, I wanted to discuss the next test separately from the others. You see, I had a new test done, a test I found out about in the Australian MGUS curcumin trial, in fact. This test checks one of the breakdown products of bone called “deoxypyridinoline” (hey, try pronouncing THAT fast, three times in a row, I dare you! ;-)). This deoxythingy is a specific marker of osteoclast activity and bone resorption. In simpler terms, it helps determine if you have bone disease or not. Well, my deoxythingy result is fully within the normal range,. Oh, and so is my deoxypyridinoline/creatinine ratio. Purrfect.

I think that’s about it. In conclusion, I’m not ecstatic (I would certainly have been much happier if all of my MM markers had simply…disappeared!!!!!), but I’m not devastated, either. In this last period, you see, I’d gone down to 6-6.5 grams/day, and, I admit this publicly!!!, there were days when I didn’t take it at all, for one reason or another. I now realize that THAT was a HUGE mistake. These test results confirm that I need to be on a regular AND higher dose of curcumin. I’m not taking my albumin, total protein, Hgb levels and m-spike numbers lightly, believe me…

So, no more 6 grams for me. I’ve already gone back up to my usual 8 grams. And I’ve added 1.5 grams of quercetin (which I’d stopped taking, because I ran out of it), too. And, well, we’ll just to have to wait and see how I do next time! No worries.

To have it or not to have it?

The question pops up every single year: “are you having the flu shot?” “No.” “Noooo? Are you nuts? Why not?”

My answer is simple: I was always sicker with the vaccine than without it, and the same happened to Stefano (I don’t mean to imply that that happens to everyone, of course…but that’s been OUR experience). And so we haven’t had the flu vaccine in years, now (I think this might be our fourth year). But I’ve written about this in previous posts, so I won’t go on and on about it here…again!

Point is, if you’re in the midst of deciding whether or not to have the flu shot, please check out this article published just a few days ago in the British Medical Journal (I’ll see if I can get my hands on the full study)…

It provides us with some food for thought, or rather, some flu for thought (hehe): http://goo.gl/UtyKOP (note: at the end of this BMJ article, there is a direct link to the Dr. Doshi’s abstract).

Many thanks to Lori for posting the link on Facebook (Yes, I get some of my news from FB…indeed a SCARY thought! But I check out everything, as you can imagine, so I guess it’s okay 😉 ).

Smoldering myeloma requiring treatment: time for a new definition? Introductory notes.

I know I haven’t been posting anything related to myeloma lately…and that has been bothering me a lot. And so I’ve been trying really hard to concentrate.

I began writing this post about ten days ago, but I just haven’t been able to finish it.

So today I decided to write a different sort of post: a post about why I can’t write a post.

It reminds me of the time when I signed up for an American Sign Language course. I was fresh out of college, so that’s QUITE a few years ago…Anyway, I loved my ASL course and was an eager student. Our first assignment was to go shopping in a supermarket and “pretend” to be deaf. The idea was that it would be helpful if we understood how it feels be to be deaf in a “hearing” world…

Even though the assignment was interesting, and it made sense, I didn’t know what to do, to be honest. I only knew a few signs at that stage and couldn’t help thinking: what if I run into a deaf person? How can I explain that this is an ASL assignment?

In the end, I just couldn’t do it. And so I wrote a paper about how I felt at not having been able to carry out the teacher’s assignment. (For the record, I got an A+.)

So here goes. Another “non-paper.” A non-post on a post that I haven’t been able to complete (yet).

A recent Mayo Clinic study published in “Blood” deals with one of the hottest new issues in the smoldering myeloma field, namely: are some of us smolderers really at the early myeloma stage? Should some of us be considered for (conventional) treatment?

The abstract is available for free here: http://goo.gl/QY244V

As you can see, the abstract mentions the Spanish PETHEMA smoldering myeloma-chemotherapy study. Well, I’d like to direct your attention to the language used to describe the PETHEMA study: “A report from the PETHEMA-GEM group described both fewer myeloma related events and better overall survival among patients with high-risk SMM patients who were treated with lenalidomide and dexamethasone.”

OVERALL SURVIVAL. What is it? In clinical trials, it’s used to see how well a treatment works…Crudely put: how many patients survive, how many don’t…

But what about the patients’ QUALITY OF LIFE? There are only three mentions of “quality of life” in the Mayo study: the first is where the authors discuss the side effects registered during the PETHEMA trial. Not surprisingly, there were many more side effects in the treatment group than in the control one. The upshot is that 30% of the patients in the treatment group withdrew from the study due to toxicity or choice, compared to only 4.8% in the control group. 17 patients compared to just 3. The Mayo authors immediately add: “A potential impact in quality of life needs to be excluded.” And that is their first mention of quality of life. Uhm.

Now, I read the full PETHEMA study. And I can assure you that the PETHEMA authors state clearly that they didn’t look at the quality of life of their study participants, as though quality of life were irrelevant…

Irrelevant?

Have we reached the point where “overall survival” is more important than “quality of life”?

Well, today I’m going to leave it at that. It’s just too frustrating to read this stuff… Too upsetting. Words words words…blablabla.

I have another reason for setting aside this study for the time being: I’m going to have blood tests done on Tuesday, I don’t want to be upset by anything in the meantime. I want to be happy and calm… :)

But here’s my final consideration: a study that doesn’t address the quality of life of patients has no credibility whatsoever, in my opinion. And it shouldn’t be allowed. It shouldn’t be bloody allowed.

What do YOU think? 

The Vasari Corridor and the Uffizi Gallery…

IMG_6352First, what is the Vasari Corridor?

In a nutshell, it’s an elevated, enclosed passageway connecting two important Florentine palaces: the Palazzo Vecchio and the Palazzo Pitti. It runs over the Ponte Vecchio, which is the most spectacular part. It’s about a half a mile, or one kilometer, long.

If you look at my first photo, on the left (on the top left, you can see a reflection in the window, which is kinda cool), you can see the Corridor…Look about halfway down on the right…the Corridor, with two small windows, sits on top of the arch jutting out from the building (the Uffizi Gallery). IMG_6378See how it continues over the Ponte Vecchio in the distance (same sort of windows)? In the second photo, you have a closer view of the Corridor, located just above the shops jutting out from the bridge and the arches (see the white-ish part). (You can make most of the photos bigger by clicking on them.)

A bit of history: the Corridoio Vasariano, as it’s called in Italian, was commissioned in the year 1565 by the Grand Duke Cosimo I de’Medici, on a design by Giorgio Vasari, hence its name. Its main purpose, back then, was to enable the Medici family and their guests to move freely between the two (above-mentioned) palaces, probably via a small carriage…It was also a fast and safe escape route in case of any trouble…IMG_6409

Interesting tidbit: I read that before the Corridor was built over the Ponte Vecchio (= the Old Bridge), the bridge housed a series of butcher shops, which used to dump their smelly waste (ugh) right into the river. Since that wouldn’t have provided a very palatable view for the Medici family, however, all these shops were kicked off the bridge after the Corridor was built and were replaced by jewelry shops, which are still there today…The third photo offers a view of the bridge and its shops…

The Vasari Corridor holds the Uffizi Gallery’s famous collection of self-portraits (from Andrea del Sarto to Chagall), which we were not allowed to photograph. IMG_6471We were, however, allowed to take photos of the views from the many panoramic windows, which offer great views of the river, as you can see. Indeed, these views are really the best feature of the Corridor, in my opinion…in addition to the neat fact that you are walking “over” the heads of the people in the streets below, just like the Medici family did several centuries ago… :)

Unfortunately, as you can tell, the day selected for our tour of the Vasari Corridor turned out to be a rather stormy one, which means that my photos didn’t come out as they would have on a lovely sunny afternoon. Oh well. Can’t have everything! :) IMG_6458

By the way, Stefano had never been to the Vasari Corridor before (imagine that!), and I’d been there only twice, many many years ago…so I’d been trying for a while to get access in some way…Not as easy as you’d think, since it’s closed to the general public most of the year, and to get inside you have reserve a private, guided tour, paying an arm and a leg…But we finally got lucky and were able to view the Vasari Corridor yesterday without losing any…limbs or being rushed by anyone… :) 

After our amble through the Corridor, which started and ended in the Uffizi Gallery, we had enough time left to check out some of our favorite paintings in the Uffizi, such as Botticelli’s “Birth of Venus,” Botticelli’s “Allegory of Spring,” and Leonardo da Vinci’s “Annunciation.” Overwhelming…so beautiful…If you come to Florence, you shouldn’t miss going to the fabulous Uffizi Gallery…

IMG_6499

Even though you can find photos of the Uffizi paintings online, photography is strictly forbidden inside the museum…so, again, we didn’t take any photos of the artwork, Just of the stunning outside views (see my early evening shot of the Palazzo Vecchio, all lit up, taken from the terrace of the Uffizi’s café, for example…)…

Anyway, ’twas a lovely afternoon…apart from the terrible weather, of course! :)

Lucca Comics and Games 2013

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We heard about it on the news on Thursday. I turned to Stefano, who still loves playing video-games whenever he has time, and said: “Would you like to go?”

12 hours later, I really regretted asking him that question.

This, by the way, is a three-day weekend in Italy. November 1 is All Saints’ Day (Ognissanti, in Italian), and today, November 2, is All Souls’ Day, or Tutti i Morti (literal translation: All the Dead). It’s a big Catholic weekend, with people going to the cemetery to “visit” their dead family members and so on…

For Stefano and yours truly, though, this three-day holiday means that we get to sleep more for three mornings in a row (if the cats don’t get too antsy, that is!), and spend an extra, fun-filled day together, which is grrrrreat… _MG_0855

And so yesterday morning we set off for the small city of Lucca, about a 1.5 hour drive from our house. What we didn’t realize at the time was that we were NOT alone. Nope, another (at least!) 5 billion trillion gazillion nerds/families/people were also heading for Lucca…filling up all the parking lots with their cars…and filling up the small streets and squares of this lovely little city, too.

We ended up parking our car quite far from the city center, a good 20-minute walk (each way). But the worst were the immense crowds (see the photo, below, which I took from the city walls of the late afternoon crowd waiting to get in…You can click on some of the photos to make ’em bigger, btw) inside this huge, city-wide exhibit/fair. I’ve never seen so many people, not even at the supermarket the day before Xmas… _MG_0896

Until we paid for our tickets and got “inside,” we hadn’t realized that the entire city center was devoted to Lucca Comics and Games 2013 (http://goo.gl/s5XPBO). No kidding. This meant that you couldn’t get inside the city walls if you didn’t have a Comics and Games ticket. So yes, this event was HUGE! 

Part of it was a lot of fun, I admit, because almost half the people there were all dressed up in costume, from fancy expensive costumes to clearly homemade and creative ones. People of all ages, not just children. Too bad my photos didn’t turn out too well…I guess I was too busy trying not to get pushed (!), especially down the narrow streets, where we were packed like sardines…not fun at all, that part! _MG_0845

Another “not fun” part. Later that evening, after we’d finally gotten home, totally exhausted, Stefano discovered that Simon, of my favorite Simon’s Cat, is going to be in Lucca today and tomorrow. Noooooo! If we’d known, we would have gone there today!!! I’m so upset! (Oh well…) Click here for the article, which includes Simon Cat’s new video, “Scary Legs”: http://goo.gl/nwzN0H

_MG_0887By the way, you may have noticed that my blog looks a bit different. Well, it IS different. It has magically turned into a pumpk…I mean, into a proper WEBSITE! :) Oh okay, I confess, no magic was involved. This website (and the blog that preceded it) was created by my friend and tech wiz administrator, Beth. What it means to have, er, “graduated” from a blog to a website, exactly, is still beyond my comprehension, since I can’t even figure out how to change the header photo (it’s a photo I took of a whale whacking its tail on the surface of the sea, near Provincetown, MA, this past summer). And the smiley face option doesn’t work, which is good news for those who hate them er, smilies! (= I’d have put a smiley face right here, but I can’t! Hehe.)

But eventually I’ll figure out what to do with this website…

(Maybe…!)

Update, Nov 4 2013: with the help of my wonderful tech wiz friend, I was able to figure out the smiley issue, so that’s fine now. As for the header photo, well, as you can see, I did manage to change it, so the whale’s tail turned into my Prezzemolo (a funny blog reader pointed that out to me, hehe). I will change the header photo from time to time…