To treat or not to treat is still a question

This morning I read a very interesting “food for thought” article, just published in the “Oncology Times,” about the same old same old (question)…that is, should patients with so-called “high risk” smoldering myeloma be treated…or not? Here’s the link (you can download the entire article; look on the right, under “Article Tools”): http://goo.gl/MzG6mj hamlet-duplex-mankoff

I decided to publish the link without adding any comments, since, duh, you can imagine which approach I would choose…no mystery there. And my position in this matter is merely reinforced (in MY opinion, of course) by Dr. Berenson’s comments on the Spanish “high-risk” SMM chemo trial…for example, the “significant design problems” of that trial…hah, no kidding!

I thought it was noteworthy that Dr. Berenson mentions “curcumin” on page 25. Curcumin, as we well know, has  been totally ignored/dismissed/ridiculed/etc. by our specialists and only recently has managed to catch their attention…probably since so many of us take it…

Boy, sometimes it feels as though I’m beating my head against a brick wall…mamma mia.

Incidentally, I was surprised by the audience’s choice, in the end. Very surprised. Or was I, deep down? Hmmm…not sure. Oops, I promised NOT TO COMMENT. Drat. Okay, I will shut up now.

Anyway, whichever side you are on, this is an interesting debate…

If only we were disinterested spectators…

A new myeloma-killer, beer and the brain, and the immune system…

beer_toastI don’t know where to begin…I read so many interesting articles today! Well, I’ll pick three of them, randomly, as follows…

  • A group of Neapolitan researchers have created a new synthetic molecule that they0ve called DTP3, which kills myeloma cells effectively, without killing healthy cells at the same time. It’s as strong as bortezomib (!) “but more than 100-fold higher cancer cell specificity in vitro,” according to the abstract. Here’s the link to the full study, which is available for free online (I confess, I’ve only read the abstract at this point, though): http://goo.gl/AMk5Ro So here it seems that we have something that kills MM cells without killing the good stuff as well…if that’s not cause for celebration, I don’t know what is!!! And I’m excited also because this is an entirely “made in Italy” discovery. :-) The study was published, as you can see, in October of 2014, but today I read an article about it (in Italian) providing a bit more information. Here’s the link: http://goo.gl/wpzTto  The items of interest mentioned in the Italian article are as follows: 1. the concentrations of DTP3 needed to kill myeloma cells are very low (always a good thing, no?). 2. DTP3 blocks the activity of the myeloma cell helper known as GADD45beta, a protein that is over-expressed in myeloma cells but practically absent in healthy cells. 3. Phase I clinical trials are set to begin in the United Kingdom this year. I’ll be following DTP3, for sure…
  • I also read a Scientific American article on a new study showing that our immune system is much more affected by our environment and life habits than by our inherited DNA: http://goo.gl/UmM6QK The study’s findings regarding cytomegalovirus and Epstein Barr are quite intriguing, by the way. It has always been in the back of my mind, in fact, that EBV had something to do with the development of my own MGUS, then SMM, and that is why the “evil virus” topic has always been of interest to me…Anyway, this is another highly recommended read. Oh, and it’s not too difficult to understand, either, which is always a big bonus!
  • In 2008 I wrote a post on xanthohumol, a compound found in the hop plant ( = BEER!!!). In a nutshell, a study showed that xanthohumol has anti-inflammatory, antiproliferative and antiangiogenic properties. Mainly, though, it KILLED myeloma and leukemia cells. Here’s a refresher: http://margaret.healthblogs.org/other-alternative-treatments/xanthohumolhop-plant/ Well, today I read a Science Daily article on a new study showing that this compound may also slow the development of brain disorders, including Parkinson’s and Alzheimer’s Disease: http://goo.gl/ghbss0 Very interesting. Too bad I don’t care much for beer…!!! Uff!!!

Celebrating my Italy

Thanks to a good friend, I was able to watch a wonderful video about Italy, produced by the Italian Ministry of Economic Development, which I hope will obliterate at least some of the amazingly dumb and ignorant stereotypes about Italians that have always driven me absolutely bonkers. It’s a short video that anyone with an interest in anything Italian should watch. Enjoy! :-)

An expert defines multiple myeloma

In this short (less than five minutes) video, Dr. Robert Orlowski, from the MD Anderson Cancer Research Center in Texas, provides us with a simple explanation of what multiple myeloma is. It’s always good to go over the basics…again, so here is the link: http://goo.gl/10Auhr

A note of interest: about halfway through, he mentions that 1 out of 5 people are “asymptomatic” at the time of diagnosis…That, I didn’t know.

A note of dislike: this video, sponsored by the Patient Empowerment Network, was made thanks to grants from three big drug companies: Onyx, Novartis, and Millennium (this is openly stated at the beginning of the video, if you watch carefully).

No getting around it. That’s where the big money is. And that’s WHY more money and resources aren’t poured into promising, non-toxic research…so sad, so maddening…

Well, for once let’s try to forget about the big drug companies and concentrate instead on the video…

Turmeric compound boosts regeneration of brain stem cells

I’ve been working on a rather complicated post (don’t ask…) but decided to take a break today, after what happened in Paris yesterday…No words can express my horror..all I can say is: “Je Suis Charlie.”

It’s hard to focus on anything else…but earlier today I came across an intriguing Science Daily article on a study showing that another compound of turmeric — not curcumin, but something called ar-turmerone — “promotes stem cell regeneration and differentiation in the brain.” And so I decided to post the link: http://goo.gl/rNXok5

In addition to imbibing vast quantities of curcumin every day, I also use turmeric, the spice, in my cooking. Often. And now I’m VERY glad I do!

Buon Anno!

HNY 2015Happy New Year, everyone! I hope you all had a wonderful evening, just like the one I had, with friends, family and/or…whomever…great food, games, fun, chocolate, good music, and lots of hugs and kisses. I spent New Year’s Eve at home with my Stefano and five close friends, two of whom had moved in with us before Xmas (together with their three cats who are living in a cat-friendly, cozy room downstairs…We are keeping our cats separated from theirs, since this is only a temporary situation, plus Prezzemolo might infect their cats with his chronic cold issue, which would be terrible!), just for a few weeks while they get ready to move overseas…

Stefano, who is an amazing cook, really outdid himself. He prepared a meal fit for a king…course after course after course of absolutely wonderful food. One of the courses had to include a pot full of lentils…According to (Italian) tradition, in fact, you have to eat lentils on New Year’s Eve: lentils are supposed to bring you money in the new year. Every single Italian I know has lentils in this period. And in any case, I love lentils…and besides, they contain IRON!

We laughed, discussed politics (luckily, we all pretty much agreed on everything!), New York City, art, food (of course!), etc….played games and…kept eating until we could eat no more. After HOURS of stuffing our faces, unable to stop because everything was so delicious, I began to feel a bit like an overstuffed turkey. Mamma mia! And I haven’t even mentioned dessert!!! I’d made a couple of gluten-free sweets (mainly for my two gluten-free friends), which turned out incredibly well…and another friend had made a delicious gluten-free apple cake with pecans, coconut milk and cinnamon, plus Xmas gluten-free cookies. We have enough leftovers to feed an army of people…

Anyway, we had such a glorious time that we nearly missed the midnight countdown. Now that would have been funny… :-D

The photo above was taken by Stefano of a beautiful stray cat in Rome (that was our Domus Aurea trip). He gave me permission to publish it on my blog, so…enjoy! Let’s hope that 2015 brings happiness and, most of all, GOOD HEALTH to all of us. Take care, everyone! :-)

Holiday pets

IMG_2974

Puzzola

 

IMG_2973

Peekaboo (1)

Whenever Xmas comes around, the Internet is invaded by photos of the most adorable, smiling, perfect pets posing beautifully for the camera, all dressed up in absurd Xmas costumes, Santa hats, ornaments, bells, ribbons, and bows.

IMG_2982

Pammy

IMG_2981

Piccolo

I think it’s absolutely normal to want to take adorable holiday photos of our pets. But let’s say that you’re having trouble getting your pet to sit still for the festive family portrait…No problem, just click onto one of the many websites giving out tips on how to get your pet to pose…

IMG_2976

Peekaboo (2)

IMG_2985

Pinga

One of them advises to use treats and bribery (might work for dogs…), as well as using “props to create and tie themes together.” Well, duuuh. I’m using a bloody Santa hat, you guys…how much “proppier” can you get??? Aaah…so silly.

Okay, okay, forget about those stupid websites. Just take your own photos.

IMG_2993

Prezzemolo

Every year, even though my past efforts have been mediocre at best, I stubbornly decide that my amazingly adorable cats have to do something cute and holiday-related for the camera. They just have to! This year, I reasoned, we have SEVEN cats, so one of them is bound to cooperate…I should be able to get at least ONE good photo, right?

Besides, I continued reasoning, if other humans can get their pets to be incredibly “holiday cute,” then so can I. And I can do it without treats or fancy props or Photoshop, which I don’t know how to use anyway. Hah!

Well, here are a few of the results of my efforts for Xmas 2014. Hehe, I know, I know…

IMG_2995

Priscilla

Which is your favorite?

Mine has to be this last one, of Priscilla. I’d just woken her up from a nap, and she wasn’t all that pleased… If I hadn’t taken this photo myself, I’d have said it looks like a total fake. But it isn’t…and the hat is real (the same I used in all the photos), I swear!!! :-)

At any rate, even if you don’t end up with the purrrrfect photo of your holiday pet or pets, the important thing is for all of us to have a wonderful holiday filled with joy and friendship and fun and, of course, yummy things to eat.

And so…Merry Xmas, everyone…pets included, of course! :-)

The Domus Aurea flu

At first I thought it was just a cold. Actually, with myeloma, there is really no such thing as “just a cold.” Because of our impaired immune systems, a cold can develop quickly into a chest infection, etc. So even with the mildest of sniffles, we have to intervene…quickly.

IMG_2839But let’s start at the beginning. Ten days ago Stefano and I went to Rome to visit the Domus Aurea, an enormous “pleasure palace” that used to be covered in gold leaf (hence its name, the “Golden Palace,” in fact), built by emperor Nero after a fire destroyed most of the center of Rome in 64 AD.

After Nero’s death in 68 AD, his successors began erasing all traces of the extravagant palace built by an unpopular emperor. Within a decade they had removed anything that could be used elsewhere — marble, statues, etc. IMG_2856And then they had the entire palace filled with earth and rubble and buried, so that they could build other things over it (the Baths of Trajan, e.g.). The palace remained underground, invisible, forgotten, until the end of the 15th century, when a young Roman fell through an opening in the hill above, ending up inside a strange grotto full of wall paintings (see my last photo). By the way, these grotto paintings gave rise to the term “grotesque” (grotesque painting). And here’s another interesting note: Michelangelo and Raffaello were among the many Renaissance painters who lowered themselves into these grottoes to study the paintings…possibly through this hole, one of many, in one of the ceilings (see photo above)…

The Domus Aurea has been closed to the public for ages while undergoing restoration and consolidation work. After part of the roof collapsed in 2010, the Domus remained closed for four years, e.g. It reopened in October 2014.  Stefano found out and immediately reserved our tickets for December. And so, on December 13th, we were in Rome…

IMG_2872When you visit the Domus Aurea, don’t expect to see anything but the massive original structure. Here and there you will see some color on the walls  and even a few painting details, but the palace is pretty much bare. It is still underground, and it is still being restored and renovated, which means that you have to wear hard hats during the entire visit, as you can notice in these two photos, above and below. It’s also a guided tour, but I missed most of what our guide told our group because I was always too far behind, taking photos of everything…IMG_2898

After an hour spent touring the Domus, Stefano and I had a lovely lunch in the Jewish Ghetto (when you’re in Rome, you have to try “carciofi alla Giudia,” which are basically fried artichokes, but ooooooh…so yummy!), then walked around Rome — piazza Navona, Castel Sant’Angelo, St. Peter’s. In the early evening we hopped back on one of those amazingly fast trains to return to Florence. A quick aside: the Florence-Rome trip now takes slightly over an hour (an hour and 20 minutes, to be a bit more precise). Compare that to the 45 minutes that it takes me to cross Florence sometimes!…Astounding, huh?

IMG_2876Okay, back to the main purpose of this post, I guess. The day after we had been to Rome, we went to the mountains with some friends, one of whom wasn’t feeling very well. The weather was dreary and miserable…In the evening I began feeling a bit on the icky side.

By Monday night I had a sore throat. Drat. I thought it was “just” a cold and stuffed myself with echinacea and elderberry. But by Wednesday afternoon, when the Dreaded Cough began, I knew that I would have to bring out the big guns. Today is Day Seven of Antibiotics. I feel much better, but I’m still coughing…much less than a few days ago, though, which is most encouraging. :-) I continue to take curcumin, of course, since it’s antiviral and antibacterial, and I’m taking other natural remedies, too. And of course, probiotics!

So where did I get “infected”? Who gave me this blasted flu that might prevent me from making my Xmas cookies (horror!)? I think it must have been on the train from Florence to Rome (or Rome to Florence). Funny thing, though: I’ve been on so many transatlantic flights surrounded by coughing, germy people, and I’ve never caught a bloody thing. Then I go on ONE train ride, and BOOM!, I’m in bed with the flu. Well, the only “consolation” is that this icky flu is going around right now, and some folks are a lot sicker than I was…That means my little immune system is still going strong. Good job! :-)

Anyway, I’ll be fine soon. A few more days of convalescence should do it…just in time for Xmas, yaaaay!!!

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…