Sherlock is away on a business trip in Madrid right now (ciaooooo!) but sent me a quick note yesterday afternoon reporting on what our endocrinologist (henceforth, she shall be known as Dr. DF) had to say about her bone mineral density test results. Well, Dr. DF exclaimed that these results were so good that they seemed fake. I kid you not.

 

Sherlock explained that even healthy women nearing menopause lose bone density, so if you add myeloma to that equation, you can imagine what happens…nearing menopause + myeloma = dilapidated bone density. I just read online that we begin losing bone mass after age 35 and even more quickly after menopause. (Note: neither of us has hit menopause yet.)

 

But, contrary to all statistics and expectations, Sherlock’s bone density has increased in the past year and a half, a relatively short time, said Dr. DF.

 

Dr. DF excluded that this rapid increase could have been caused by Sherlock’s intake of vitamin D. Nope, she was really baffled. And that is when Sherlock brought up the curcumin and bone density studies. Dr. DF was intrigued and promised to have a look at said studies. So I guess I will be reporting more on this topic at some point next year. I have an appointment to see Dr. DF in February; the topic is bound to be mentioned.

 

They talked about me as well. Dr. DF commented that it was a terrible pity that I hadn’t had a bone density test before I began taking curcumin (indeed!). She said it would have been fascinating to see if my bone density had increased since then (hey, by the way, “then” = almost three years ago!).

 

Well, Sherlock has already begun badgering me, long-distance from Madrid!, about having a bone mineral density test…and, after giving the matter some thought yesterday, I concluded, “well, why not? After all, what’s another test?” Our results, Sherlock’s and mine, could be of use to other patients with bone issues. So I will make an appointment in the next few days.

 

For now, though, I just want to congratulate Sherlock on her excellent results. Bravissima!

 

Oh, and by the way, I forgot to mention that her haematologist (a different one from mine) pronounced her stable, too.

 

So…good news all around.

This morning I went to see my haematologist at the Haematology Center of Careggi Hospital in Florence. I hadn’t seen her since February of 2008.

 

One of the first things that she told me, smiling, is that she has begun recommending curcumin to her MGUS patients. And, she added, some of her patients read my blog (and have begun taking curcumin on their own). Well. To say I am thrilled is a huge understatement. Huge. But let’s proceed to what she said about my test results etc.

 

Not so good stuff

 

After examining my July test results (I still haven’t received my November ones), she asked me if I had had any colds, fevers or infections recently. No, I answered, not even a teeny tiny nose drip. I then asked her why she was so surprised to hear that, and she told me that my immune system is very very low (in Italian: Lei ha pochissime difese.).

 

She is concerned about the disappearing act of my good immunoglobulins (my IgMs and IgAs). She told Stefano and me that that is the only sign of possible progression. But this was at the beginning of our visit.

 

Well, I attribute my good health to the anti-viral and antibacterial properties of curcumin and, in part, also to a homeopathic remedy that Sherlock suggested I take last summer, which I believe protected me from getting my usual bout of bronchitis in the fall.

 

Incidentally, Stefano has had a horrible cold in the past few weeks, and I haven’t caught it. So I may have a disappearing immune system, but the little that is left makes the Ninja Turtles look like Turtle Doves (knock on wood! tocca ferro!).

 

Good stuff

 

She looked over my July spinal MRI results and confirmed what I already knew: I have no lesions (at least, not on my spine!). So we can postpone the series of full skeletal x-rays for now. Phew. No bone lesions. No lesions!

 

I asked her if she had obtained any details about my 2005 (=50% neoplastic cells) and 2007 (40% neoplastic cells) BMB samples, and she had. With a big grin on her face, she told me that the result is much better than expected: my 2007 BMB, taken about a year after beginning my curcumin protocol, wasn’t the reported 40% but LESS than that. Less than 40%? I almost hit the ceiling when I heard that bit of news!!!

 

She didn’t give me an exact percentage, though, and for some reason I didn’t think of asking her. I think I was too surprised and excited to think clearly right then. Duuuh! I should write her asking for more details about the BMB (BMB=bone marrow biopsy, by the way) samples at some point. Oh, another good bit of news is that I don’t need another BMB. Not in the near future. I took that as a really good sign, for it’s almost been two years since I had my last one. I hate BMBs with a passion, even though my 2007 one wasn’t as painful as the previous two (OUCH!), thanks to the experienced doctor who performed the procedure. Anyway, no BMB anytime soon. RELIEF!

 

I asked her if I am anaemic, which is a big concern of mine. Flipping again through my test results, she shook her head and said, “no, not at all.” She also told me which results I need to monitor for anaemia. So I will be able to do that on my own from now on. Fantastic! She did join forces with Stefano and insist that I eat more red meat. Okay. Okay. Okay. I will.

 

My monoclonal component has gone up a bit in the past year, which made her frown a bit, but she added that everything else is in such good shape that she isn’t concerned. This slight increase is not a sign of progression, in other words.

 

I told her that I was testing parthenolide now, and she was very interested in that. She told me that if it works, she will publicize my results. By the way, she wants to see my test results, the November 2008 and January 2009 ones, but she doesn’t have to see me again for six months. Yippee. Speaking of parthenolide, she told us that she is presenting a paper at the upcoming ASH Annual Meeting in December, and promised to keep me informed of any news about DMAPT (a week or so ago, looking through the ASH abstracts, I found a paper about DMAPT and myeloma, very exciting indeed).

 

I asked her about nifuroxazide, the oral antibiotic used to treat colitis and diarrhea, which has been found to kill myeloma cells by directly inhibiting STAT3 (see the September 29 2008 issue of “Blood.” I have the full study and will report about it soon on my blog). She knew about the study but had nothing to add. None of her patients are taking it. She seemed a bit ho-hum about it.

 

At the end of our visit, Stefano and I asked her what the verdict was. She answered.

 

STABLE

 

P.S. As I typed that word, “stable,” tears filled my eyes. In fact, I had to stop myself from sobbing. Where the heck does all this emotion come from? Well, I guess a part of me was scared, since my July results aren’t that splendid…but I can relax now. No need to worry. My specialist confirmed that I am stable. That’s cause for celebration, not tears.

 

Oh, one last thing: As we were about to leave, she told me to listen to my body. No kidding. I was a bit surprised, since she is, after all, a conventional specialist. But one who can think outside the box.

 

She has earned my utmost respect.

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