What ever possessed me to ask the question “what is myeloma”? One thing led to another this morning, and I found myself doing a heap of research when I wasn’t raking leaves in the back yard (sigh). Unanticipated research. And plenty of thinking and pondering and re-thinking and re-pondering…Finally, I said basta! Thing is, after reading word definitions and poring over treatises (I went as far back in time as Plato’s Timaeus), I decided to delete most of my draft. It got too long and too boring, even for me! 😉

 

Some official definitions tell us that myeloma is a “disease.” Interestingly, and this is something that I had never realized until now, “disease” and “illness” are the same word in Italian: malattia. But for me, malattia means that you are ill. I don’t associate malattia with “disease,” since you can have a disease but not necessarily be ill. Right?

 

Interesting cultural difference, here, perhaps…and take a look at this excerpt from the myeloma patients’ guidebook published by the Istituto Nazionale dei Tumori in Milan. It begins with the definition of myeloma: Il Mieloma Multiplo è una malattia del midollo osseo che colpisce in prevalenza persone adulte ed anziane. (=Multiple myeloma is a disease/illness of the bone marrow that affects mainly adults and the elderly.) Do I translate that as “disease” or “illness”? Heh.

 

Anyway, I really liked the view of myeloma as a “challenge” and a “pain in the …” (the latter, in a private communication). And, of course, as an “accident.” A molecular accident.

 

Well, after all, it really boils down to semantics. If you look for synonyms of “disease,” you will find everything from “cancer” and “ache” to “misery” and “canker”…oh yes, AND “illness.” The antonym of “disease” is “health.” So is myeloma a “disease,” after all?

 

But so is the bubonic plague. So is distemper. So is the flu. So is tuberculosis. So are lots of things. Can’t we do better than that?

 

And so we get to the rest of my story, as promised.

 

As soon as Stefano pronounced the word malattia the other night, I pounced on the poor chap. Do I have a fever?, I demanded. Do I have a cold? No. Precisely. So I am not ill.  I don’t feel ill. I am not contagious. I don’t look ill. (Note: this was before I realized that illness and disease are the same word in Italian.)

 

As I mentioned, I looked up all the various definitions of “cancer,” “illness” and “disease.” I looked up the definition of “myeloma” on various sites. But I wanted something more personal. My own definition. After all, myeloma is affecting MY body, my bone marrow, my blood. I am still pondering, but as of now I see myeloma as a part of me. Oh, there is no question that it is an unwanted part, and if I could make it disappear into thin air right now, I would (even though I agree with LPC’s comment).

 

Some time ago, I don’t recall where, I read what I thought was an appropriate description of myeloma: a bothersome roommate. I liked that image and borrowed it.

 

The roommate image reminded me, in fact, of a couple of really dreadful housemates that I had during my first year in college. They were definitely the CHFH, or College Housemates from Hell. They were messy and dirty and noisy and immature and silly. They took forever in the bathroom. They never cleaned up the bathroom or the kitchen (or the rest of the house, for that matter). Their idea of fun was to drive around at night throwing eggs randomly at people walking on the street (when I told them that I thought that was dangerous etc. etc. etc., they laughed at me for being such a fuddy-duddy). Oh, the list goes on and on and on. Luckily, in my junior and senior years I had a couple of good housemates, Harvard Law School students, incidentally, at the same time President-elect Barack Obama was there…hey, I wonder if they attended some of the same classes?

 

At any rate, that is how I see my myeloma…as a messy and at times annoying roommate. But for now I have managed to lock my unruly roommate inside his (her? it? Hmmm, I see another post in the making…the myeloma gender post!) room. And I have no intention of letting him out any time soon. No matter how loudly he hollers.

  

P.S. An interesting (long) overview of how we define disease and disability. It’s not as easy and straightforward as we might think: http://tinyurl.com/5ekkr5

 

P.P.S.S. A “Proposed Glossary of Cancer”: http://tinyurl.com/668hyl (excerpt: The term ‘cancer’ is perfectly respectable. The public accepts and uses it. It is in no sense a “dirty word.” Some otherwise forthright medical writers and even speakers before medical audiences nevertheless appear to find the term too crude and inelegant for polite usage and, therefore, resort to ostensibly more refined and erudite euphemisms, such as a ‘malignancy’ or ‘malignant disease.’  

 

P.P.P.S.S.S. Please watch John’s video (see his comment on my previous post). It’s wonderful: http://www.youtube.com/watch?v=l090KJ-sEII 

 

Just to end all these “P.S.”s. I’m with William: if someone asks me what myeloma is, I answer “it’s cancer.”

 

But in my mind and heart, it’s really my unruly roommate.

 

A couple of evenings ago, Stefano referred to myeloma as an “illness.”

 

Well, today I would like to ask my blog readers: do you agree with him? (for my Italian readers: secondo voi, il mieloma è una malattia?) Just curious. Then I will tell you the rest of the story. 🙂

Yesterday morning I handed back the grammar test that my pre-intermediate students took on Friday. My strategy is to have them correct their own mistakes…so what I do is hand them bare copies of the test and quiz them on the parts where they made mistakes. My reasoning is that if I simply gave them the corrected test, they wouldn’t remember anything after two seconds. This way, they have to reflect about the mistakes they made. So far I have found this to be a good method.

 

One of my funniest students, Colleague C (for a reminder, do a blog search for “moldy bread” 🙂 ) didn’t agree with some of the corrections. She wailed that she feels like a little bird, full of life and ideas and new grammar rules, but stifled inside the cage of English grammar. But, I tell her, rules are rules. Her standard refrain: No, Margaret, it depends.

 

Let me illustrate this point with an example from one of the exercises, one of those insert-the-missing-preposition exercises: “I’m looking _____ my neighbour’s cat while she’s on holiday.” My students had all answered “for”: “I’m looking for my neighbour’s cat blablabla…”

 

Yesterday morning, they couldn’t figure out the mistake. They listed all the prepositions that they could remember. They insisted that the correct answer just had to be “look for.” They protested, But Margaret, you told us that “cercare” is translated “to look for.”  True, I answered, but this is not “cercare,  which makes no sense in this context. This is “badare a.”

 

When I told them that the correct preposition was “after,” Colleague C blurted out: No, no, Margaret, it depends. For example, while the neighbour was on holiday, what if the cat got lost, and I had to look for him? You see, it depends, it always depends on the situation. Well, we did have a bit of a laugh over this one.

 

Upon reflection, though, so many things in life depend on how you look at specific situations. When you receive bad news, e.g., you can try to examine it from different perspectives…and in the end, it may actually turn out to be not-so-bad news.

 

Question: was I better off before my myeloma diagnosis or am I better off now? Hmmm. In many ways, as incredible as this is going to sound, I am better off now. I have a purpose and drive that I didn’t have before my diagnosis.

 

In addition, if I hadn’t begun writing bits and pieces for my blog, I would never have discovered that I can actually write. And writing has now become an important part of my life. Who would have thought? A few years ago, I would have said, no way, I can’t write, period. But here I am, every day, typing away at something, full of ideas. I have written a ton of unpublished blog pieces. Sometimes I write just for fun.

 

Therefore, for me, having myeloma is not all bad. But if I were in a later stage, and I may get there someday, well, there is no question that I would think differently.

 

Colleague C is right.

 

It depends.

 

[HAPPY BIRTHDAY, DAD! I LOVE YOUUUUUU!!!!! AUGURONI!!!!! 😀 ]

One of Stefano’s many areas of expertise is beer. He knows a lot about it and enjoys drinking a beer in summer AND winter…cold, cool and lukewarm, dark and light, different brands from several European countries, including Italy. Always with moderation, of course.

 

As for me, the only times I manage to swallow a couple of sips of beer is when I am inside an English pub (=once every ten years or so!). Stefano thinks that I prefer English beer because it isn’t as fizzy as beers made in other countries. But his love for, and my general dislike of, beer is not the point of today’s brief post. The point is that, while doing research on a sort of related topic, I came across some very good news for all the myeloma beer drinkers (and, why not?, beer drinkers in general) out there…so here goes.

 

A group of researchers, including Prof. Aggarwal, tested xanthohumol (XN), a compound extracted from the hop plant, discovering that it has anti-inflammatory, antiproliferative and antiangiogenic properties. Their report was published in the October 24 2008 issue of “Blood.” I would love to read the full study, but Sherlock is off on a brief and much-deserved holiday, so I will have to wait until she returns to Firenze. In the meantime, the abstract (http://tinyurl.com/5q55w2) gives us enough food for thought: XN potentiated TNF-induced apoptosis in leukemia and myeloma cells. The words “apoptosis” in the same sentence as “myeloma cells” always make my day.

 

You can go read about all of xanthohumol‘s other properties, including the downregulation of the infamous hyperactive NF-kappaB (hurrah!). But the important thing is that xanthohumol causes the death of leukemic cells. Yes!

 

Okay, but what is xanthohumol’s connection to beer? Stefano and other beer connoisseurs probably already knew this, but it was news to me: the hop plant gives aroma and bitterness to beer. And its compound xanthohumol was first isolated thirteen years or so ago by Oregon State University beer drin…I mean, researchers. They discovered that it inhibited tumour growth and enzymes that activate cancer cells.

 

We shouldn’t forget that lab studies undoubtedly use a pure compound, whereas the one that is found in most beers is probably not so pure. Still, it’s better than nothing. From what I read, if you want your beer to have a higher hop content, choose ale, stout or porter. The darker, the better, apparently (?). I have a feeling that the bitterer beers contain more hops and would thus be preferable to sweeter-tasting beers. But hey, I could be really wrong about that.

 

In conclusion, I may try drinking some bitter dark beer now and again. And I will never again suggest to Stefano that he might be better off drinking water instead of beer. 🙂

 

P.S. For more info on hops, see: http://en.wikipedia.org/wiki/Hops

This is a compilation of love song lyrics supposedly translated into English by ESL (English as a Second Language) students. Most amusing, I thought 🙂 :

From morning’s glaring sun to the smelly afternoon,

 

You are always inside my lonely brain.

 

I hope we meet in an accident very soon.

 

My heart will not stop hemorrhaging for you.

 

The night you squeezed me I visited heaven.

 

Your love flies me swiftly into a mountain.

 

You make my heart sour.

 

One day, you will startle yourself and say “oh no!

Why did I walk the opposite direction of him?

 

Like the fishes need the ocean beach, I need you.

 

When you kiss me, you make my blood evaporate.

 

Your lovely, unwrinkly skin requests my attention

 

You will always be my lemon moon ray lover.

A blog reader (thanks!) told me about a study published earlier this month in “Nature.” I’ll start with a quote from the Eureka Alert I read yesterday (http://tinyurl.com/5nesch): For the first time, scientists have decoded the complete DNA of a cancer patient and traced her disease – acute myelogenous leukemia – to its genetic roots. A large research team at the Genome Sequencing Center and the Siteman Cancer Center at Washington University School of Medicine in St. Louis sequenced the genome of the patient – a woman in her 50s who ultimately died of her disease – and the genome of her leukemia cells, to identify genetic changes unique to her cancer.

 

The scientists believe that these genetic changes originated from a single clone (!) and occurred one after the other—a sort of domino effect. They discovered three types of mutated genes: genes that are tumor-suppressors under normal circumstances, genes that promote cancer growth, and genes that may unlock the mystery of chemoresistance. Ahhh, chemoresistance…this phenomenon is unfortunately common to many cancers, including myeloma (incidentally, while doing research for this post I made an unexpected discovery…must do some major research this weekend…hope it pans out!).

 

The Eureka Alert provides a good, easy-to-understand summary. But I like to check my sources whenever possible, so I looked up the full study: http://tinyurl.com/57yd6j. Using a simple skin sample taken from the AML patient, these Washington University scientists found ten genes with acquired mutations. Two had already been studied, as they possess typical AML mutations and are involved in disease progression, but eight presented “new” mutations. The researchers determined that all of these mutations […] were present in nearly all tumour cells at presentation and again at relapse 11 months later, suggesting that the patient had a single dominant clone containing all of the mutations. No kidding: a single clone!!! Do I smell an AML stem cell, here?

 

The study is very detailed, very technical. At one point I found myself wading through a sea of alleles and genome gapped alignments and putative small indels and coding exons and split reads algorithms. Mamma mia. Eh, sometimes it is best to give up and glide gracefully over to a study’s Discussion part, which is usually more intelligible. So, let’s have a look at the Discussion. The fact that most of the genes discovered by this team have not been targeted in the treatment of AML justifies the use of next-generation whole-genome sequencing approaches to reveal somatic mutations in cancer genomes. I couldn’t agree more.

 

Of the unidentified (above-mentioned) eight mutations, four had not been previously implicated in cancer pathogenesis, which I found verrrry interesting. Further on we read that The importance of the eight newly defined somatic mutations for AML pathogenesis is not yet known, and will require functional validation studies in tissue culture cells and mouse models to assess their relevance. So mutations do exist, but they may be harmless, in other words. Probably not, though.

 

And also: the same mutations were detected in tumour cells in the relapse sample at approximately the same frequencies as in the primary sample. All of these mutations were therefore present in the resistant tumour cells that contributed to the patient’s relapse, further suggesting that a single clone contains all ten mutations. Ah, the single clone theory again.

 

The study ends on a note of prudence: For AML and other types of cancer, whole-genome sequencing may therefore be the only effective means for discovering all of the mutations that are relevant for pathogenesis. Okay, that, to me at least!, means that a cure for all of these presently incurable cancers, including my own, is not in the near future. This is not easy for me to say, but now I know why my skin crawls whenever I hear myeloma specialists declaring that a “cure” is around the corner or visible on the horizon (it just so happens that I recently heard one say words to that effect)…oh, I wish it were true…

 

But I don’t want to end on a negative note. I really do hope that genome sequencing for all cancer patients will shift quickly into high gear. And there are reasons to be optimistic. The sequencing technology has improved a great deal. It used to be very expensive and complicated to perform these genetic tests, plus the necessary genomic DNA samples had to be very large, but that is no longer the case. Reduced costs and smaller samples should make this new-generation technology more widely available to us. 

 

It’s a first step.