First, do no harm

Oh for crying out loud, here we go again — an article on early treatment for smoldering myeloma folks who have no CRAB symptoms, not One Single One.

My favorite thing to read.

Not.

You can read the entire article (it’s not long, just a couple of pages) here: http://goo.gl/aHdpS6

Interesting excerpt: Before enrollment in an SMM treatment trial, patients should be aware that the “watchful waiting” approach remains a legitimate strategy given the body of current evidence. It is important to note that there is significant discordance (>70%) in the overall SMM patient risk classification and that prospectively obtained risk models are not yet widely in use. Thus, better predictive models and biomarkers need to be validated prospectively before one can determine an individual’s lifetime risk of disease progression with certainty. Despite recent advances, the standard of care of SMM remains a “watchful waiting” approach, as larger international randomized studies and longer follow up are awaited.

Yes indeed, I fully agree that it is important to note that MORE than 70% of the experts disagree on how to classify us smolderers. MORE THAN SEVENTY PERCENT??? Wow, that’s so amazingly encouraging…

Not.

Well, at least these researchers lists “treatment toxicity” for SMM patients as a “concern,” since there is no way of predicting who might progress to active myeloma and who might remain at this stage forever.

They also mention the fact that current treatments can give rise to “serious toxicities.”

This part of the article, if not the entire article, shows, at least to me, how doubtful and hesitant our myeloma experts are, and that was very interesting to note. At one point, e.g., they wonder “whether the benefits of treatment of SMM are justifiable in the light of the risks involved.” (You can imagine what my answer would be…)

And it is precisely the discussion about the risks involved that most intrigued me…So let’s have a closer look at the myeloma cell subpopulation section (at the beginning of page 1770).

First, what are these subpopulations? The article provides the answer: “at MM diagnosis, recent data inform us that there is no single clonal population of malignant plasma cells but rather different subpopulations that are branching off an original clone.”

While the researchers themselves admit that very little is known about HOW these subpopulations interact, it seems that they COMPETE for survival in the tumor microenvironment).

I can’t help it — my mind is now filled with battle scenes from the movie “Braveheart” — swords, axes, clubs, spears, heads bashed in, blood, guts, body parts everywhere…except in this case we have myeloma cells fiercely charging and whacking away at other myeloma cells…But okay, I’m getting a bit carried away…

Let’s step back for a moment and imagine that the subpopulations of myeloma cells in SMM folks are in a sort of delicate balance: there are groups of really nasty evil slobbering myeloma cutthroat criminals floating around and coexisting with groups of relatively innocuous myeloma dumbbells. They’re all just hanging out, without causing any serious injuries or damage, at least for the time being.

But then, at a certain point, all these subpopulations get smacked over the head with a bunch of chemo drugs.

The first to go are the weakest ones.

This means that we are left with the potentially dangerous bad cutthroats who’ve managed to escape the chemo bombs…

Let’s also not forget something that I don’t think the article mentions at all but that is CRUCIAL: chemo bombs don’t differentiate between good and bad cells. This means that the tumor microenvironment has been changed radically now: the weak myeloma cells are gone…but so are the good cells…

So what happens then? Without their weaker rivals, the cutthroats have more room in which to move around in as well as more opportunities to proliferate and wreak havoc in their newly-changed surroundings. In my Braveheart scenario (which is based on what I have read here and elsewhere), this seems to fall under the expression “clonal evolution” used by the researchers in that helpful red and green table, the one with the red question mark on top.

I don’t know about you, but I find this potential scenario really freaky…

Therefore, given all these unknowns, given all these risks, why (OH WHY????) jump the gun and intervene before it’s necessary? It simply makes ZERO sense. Let’s summarize the main points:

  1. The experts themselves can’t agree on how to classify us smolderers.
  2. There is no way of knowing what happens when chemotherapy is administered to someone who has no CRAB symptoms.
  3. Treatment toxicity is a real concern. Not a potential one.
  4. Last but not least, it seems that the potential for strengthening the super evil, stronger, more resistant-to-treatment myeloma subpopulations is E-NOR-MOUS.

Too risky. Too dangerous.

In sum, this article merely reinforces my conviction that early intervention — both in a clinical trial setting and, worse, in a non-trial setting — sucks…

big time…

A Harvard Gazette article on blood cancer mutations…

I’ve always wondered if I would have been better off knowing that someday I might develop multiple myeloma…or any other disease, for that matter.

Before I go on, I want to tell you a short personal story: about 25 years ago I found out that one of the students in my M.A. program was a psychic/fortune teller. I also found out that she’d told some interesting things to some of my colleagues. Well, I’m a born skeptic, but I was intrigued, I admit. And so one day I asked her if she’d tell me my “fortune,” too. She agreed (very nice lady, btw). So off we went, all the way up a hill overlooking the campus, far away from everyone. I don’t remember much about our encounter, but I do recall that she first looked at my hands and then held them for a while. She told me a bunch of things, some of which she couldn’t possibly have known, ending with this ominous statement: “You won’t die of old age.”

Sheeesh!

I remember feeling very uneasy…and at a loss for words. I’m certain that I didn’t ask the obvious follow-up question: “well, what will I die of, then?” I’m such an inquisitive creature, especially now, that I sometimes regret NOT having asked that question…

Okay, back to the reason I’m writing on this rather peculiar topic: yesterday afternoon I read a very interesting Harvard Gazette article on a group of Harvard and MIT researchers who have discovered “an easily detectable, premalignant state in the blood,” which identifies those folks who are more likely to end up with blood cancer: http://goo.gl/KUvF8V

Interesting read, don’t you think?

So let’s say you are in your 20s — the same age I was when I was told my “fortune.” You go in to have blood tests and find out that you have a 10% risk of developing blood cancer at some point in your life. Then, after decades of worrying and fretting and whatnot, you turn out to be as healthy as turmeric root. Unless my math is totally off, in fact, about 90% of the folks with the mutated cells will NOT develop any kind of blood cancer…

Now, wouldn’t it have been better NOT to have been told in the first place? Is it really worth it to go through life with a perhaps nonexistent sword hanging over your head?

That said, if I had known about my risk factor AND about curcumin long before I was diagnosed with MGUS, I wonder if things might have turned out differently. Would I still be at the MGUS stage? Or would I not have developed MGUS at all?

Who knows?

Anyway, I’m curious to know what the researchers will come up with next. If they could find a way to stop the subset of naughty cells from developing…Well, that would be a great bit of news indeed!

When in doubt…post a link.

I got home on Saturday — very nice to be back with Stefano and the kitties — and have been incredibly busy since then…as well as recovering from jet lag…zzzzz. And…

Oh dear, I can’t think of anything interesting to write about. Hmmm. Soooo, what do you do when you’d like to publish a quick post but can find absolutely nothing to say? Simple — you post the link to a video. :-)

Seriously, though, this is one of the most extraordinary videos I’ve seen in my entire life. It’s a brief scene taken from a BBC documentary, showing elephants delicately touching the bones of a female ancestor. I’ve never seen anything like it, and I bet you haven’t, either…unless of course you’ve already seen this video. ;-) Anyway, it lasts less than three minutes, so please have a look: http://goo.gl/QE8VMm

Thanksgiving chaos

Months ago, when I booked my flight to the U.S., I compleeeeeetely forgot about Thanksgiving, one of the most celebrated U.S. holidays AND one of THE busiest travel days of the entire year…millions of people on the move…traffic messes…How could I have forgotten? But I did, and so I booked my return flight to Italy for the day BEFORE this huge U.S. holiday. Smart, huh? ;-)

When I realized my mistake, I thought, “oh well, no problem, I’ll just have to leave for the airport a bit earlier than usual…”

But then the weather reports began warning of a powerful winter storm, what we call a Nor’easter here, making its way toward Boston…And yes, it’s going to hit Massachusetts today. Soon, in fact. The forecast is rather dire…up to 12 inches of snow (not here on Cape Cod, but to the west and north of us)…high winds…you name it…

I wasn’t overly concerned, to be honest, but, just-in-case, yesterday I called my airline to see if any storm-related delays were expected. I was told that there was indeed a winter storm warning in effect, and that if I wished to rebook my flight (mind you, I hadn’t even asked about rebooking!), the airline would waive the usual rebooking fee (= $250!). Extraordinary. So I decided to rebook, of course. Now I’m leaving for Italy on Friday. Weather looks fine. No problem.

Now I won’t have to worry about driving up to Logan Airport in Boston in the wet, snowy, pre-holiday traffic mess or worry about flight delays, which might have made me miss my connecting flight to Florence. Relief.

Live and learn. The next time I book my flight to the U.S., I’m going to check on those major holidays first. But hey, this time I really can’t complain — this delay means that I will be spending a few more days with Mom and Dad. And for that I am indeed thankful! :-)

Moments of pure happiness

I watched three movies while flying to Boston earlier this week. The one that gave me some tasty food for thought was titled “Hector and the search for happiness,” a quirky movie about a well-off London psychiatrist who becomes increasingly dissatisfied with his perfect, predictable, boring and empty (in my opinion, of course) life. When he realizes that his patients are not getting any happier, he tells his girlfriend that he wants to travel around the world to discover what happiness is, what makes people happy. So he sets off on a rather bizarre journey that takes him to China, (somewhere in) Africa and finally to California.

There were a few things I didn’t like about the movie (the obvious stereotypes, e.g.), but I was much intrigued by a question asked towards the end by Christopher Plummer (who plays the part of a professor studying the effects of happiness on the brain)…something like: “who among you has experienced a pure moment of happiness?”

I almost didn’t pay any attention to the rest of the movie. I was desperate to sift through my memories to find out if I’d ever experienced any moments of pure happiness. “What if I’ve never had any?” I was absolutely horrified at the thought.

Luckily, I came up with many such moments (mostly associated with Stefano, the love of my life), but the first that popped into my mind was the very first time I was sitting on a cliff surrounded by puffins, those funny-looking, wonderful sea birds…almost impossible to describe the way I felt…a truly magical moment…total bliss. The Welsh islands of Skomer and Skokholm have given me — and Stefano, too, I think — many moments of pure and absolute joy, and that is why we keep going back there, year after year. 2015 will be no exception, of course…we already have a reservation…

Interestingly, most of my memories seem to be concentrated in the past nine years or so, that is, in the period following my diagnosis of smoldering myeloma (2005). That is when I began focusing less on my career and more on enjoying my life…

Test results

P1000011 - Version 2Yesterday Stefano scanned my test results and sent them to me, but I was out and about having fun with my sister and testing my new camera (btw, check out the fog here on Cape Cod yesterday… amazing, huh? …You can barely make out a woman walking her dogs in this photo = Route 6A in Brewster, Massachusetts) so I really didn’t have enough time to sit down and write a proper post. Actually, sis and I have another fun day planned today, too — we’re driving to Provincetown in a couple of hours, e.g. — but I decided I didn’t want to wait until tomorrow to write my test result post, so here goes…

Some of my results were good…others, not-so-good…

Let’s look at the good stuff first:

  • ESR (Italian VES): same as it was in February 2014, no change
  • C-reactive protein: it’s actually decreased a little bit, from 0.23 to 0.17 mg/dL. Still way within the normal range
  • Serum creatinine: slightly down and, again, still way within the normal range
  • Creatinine clearance: perfectly within normal range
  • Serum iron and ferritin: stable, within normal range
  • Glucose: stable, within normal range
  • Uric acid: it was over the normal range last time but is now back within the range, which is excellent news
  • Cholesterol: down 8 points from last time, which might possibly have something to do with guggulsterone’s anti-cholesterol activity, but who knows?
  • Liver function (GGT, ALT, AST): beautifully within the normal range
  • Calcium: 8.9 mg/dL, down slightly from 9 mg/dL, so still stable and nicely normal. ;-)
  • Total protein: slightly down compared to last tests, even though it’s still a bit over the normal range.
  • No Bence Jones, as usual…yippeedoodee!
  • Total IgG is still high, and in fact I considered putting it in the “not-so-good” list, BUT it continues its downward trend (these results AND my February results), and that’s what’s important to me. IgM and IgA = no change compared to my previous two tests…still low but holding.
  • Freelites. My kappa/lambda ratio is a bit down, compared to my previous three tests. Good.

P1000025Not-so-good stuff:

  • My m-spike is slightly up compared to my last test. But it’s been higher in the past, so no worries. We’ll see how my next tests turn out. The seesaw effect…I’m used to it by now.
  • My red blood cells, hematocrit and hemoglobin have again slipped slightly under the normal range. Just slightly, but…darn it: I see molasses, flaxseed lignans, green veggies and, mostly, red meat in my near future. I can pull these numbers up, so I’m simply sighing a bit at this point.
  • Vitamin D is in the normal range but a bit on the low side. I haven’t been taking it consistently, I admit. Time to begin doing that…every day.

Sure, things could have been a lot better, but they could have also been a lot worse. So, all in all, I’m satisfied…And still happily smoldering away, fog or no fog… ;-)

Unfinished…but ready!

I’m leaving for the U.S. tomorrow morning (a 7 a.m. flightzzzzzzzzzzzzzzzzzz).

Y’know, when I’m getting ready for a trip, I always delude myself into thinking that I’m so incredibly well-organized, with my to-do list and so on, and that I’ll be ready to leave DAYS before departure. But then, for some reason that still escapes me, in the end I’m always rushing around like a headless chicken. Quite puzzling.

Today, for example, I tried to complete at least one of my unfinished posts (research posts) AND make some soup for Stefano to eat while I’m gone AND…well, do a bunch of other boring but necessary stuff. Finally, late this afternoon, I gave up on the post (the soup came out really well, though :-) …one of my own inventions with squash, onions, beets, fennel, carrots, ginger, turmeric, cumin, and oh, a few other things, too). Well, all I can say is that I hope to find some time to finish my post while I’m at my parents’ house…

But I need to go to bed now. So take care, everyone…I’ll post about my test results as soon as I get them (I hope, on Wednesday, if Stefano can make it down to the lab before it closes…)…

Ciaooooooo! :-)

Test tip

I had my blood tests done this morning. The guy who drew my blood was a real champion…not. He stuck the needle in my arm but…nothing happened. No blood. He tried again, while I was watching. Again, no blood. So he began sort of poking around in my vein, and pulling back on the plunger.

“Ouch,” I exclaimed.

“Oh, sorry, did that hurt?” he asked, concerned.

“Yes, it did,” I grimaced.

“Well, this has never happened to me before. How strange. Where’s the blood???” he wondered out loud.

“I think it’s hiding because I didn’t have my cappuccino this morning,” I managed to say with a straight face.

“Ahhhh, is that right? Could be,” he smiled, still poking around.

Well, he finally got the right spot in my vein, thank goodness, and my blood began filling about one million test tubes. I am left with a bit of a reddish bump on my arm…otherwise, no harm done. I’m a tough gal, y’know!

My results will be ready on Wednesday…but by then I’ll be at my parents’ home in Massachusetts, so Stefano will have to scan and send them to me via email. Fingers crossed…

Okay, now for my “test tip” advice for the day, which I believe will come in very handy for those of you who are nervous about having your blood tested (this is not my case anymore, but you never know when you might come down with a case of the test jitters, so…might as well be prepared). I’ve probably mentioned this before, but hey, it never hurts to repeat potentially useful information, right? laughter-medicine

Here goes: when you go in for tests, take a funny book with you and read it while you’re waiting for your name to be called. This morning my choice fell on “Anguished English” by Richard Lederer…a very funny collection of English language bloopers. In the past, I’ve laughed out loud in waiting rooms, alarming other patients, so nowadays I really make an effort to keep my amusement to myself.

Oh, and here’s another great reason to read a funny book in the waiting room: in addition to relieving stress, laughter strengthens the immune system. It’s a win-win situation. :-)