Margaret’s Corner (living with myeloma)

I don’t have any interesting news to blog about these days…just family reunion stuff. My sister was here when my parents and I arrived from Italy last Wednesday, and my niece arrived two days ago from Arizona, where she and my sister live, so yesterday we all got together for the first time in years. Lots of laughing, horsing around and teasing, as though we had never been apart. 

I also got clobbered twice at Scrabble, as expected, but I didn’t do as badly as I thought I would…in fact, at one point I was ahead (my niece was very upset, hehe)…but then she came up with a 7-letter word. Eh! She and my sister know all the cute Scrabble tricks, I still have to learn…

I am staying at my parents’ house on Cape Cod, Massachusetts. The Cape, as we call it, is a lovely peninsula about an hour and a half’s drive south of Boston. I was born on Martha’s Vineyard, an island off the coast of Cape Cod. As I think I have mentioned here before, when I was six years old my parents moved to Florence, Italy, where I grew up (I went through the Italian public school system, including a couple of years at the University of Florence).

Anyway, when I was in my early 20s, I returned to the U.S. and went to college in Cambridge, MA. And I lived and worked in Boston after graduating. So I have strong ties to this area and know it well. Very pretty here at this time of year. I will be taking photos but not publishing them (probably!) until I return to Italy two weeks from now, because I don’t know how to upload photos onto my mother’s computer, a Mac, and, quite frankly, I don’t want to waste my precious time here learning how to do that.

So these are lazy days, spent visiting with my family, watching U.S. television, reading and going shopping (clothes are sooo cheap here compared to Italy!). And today I want to go take a walk on the beach…the Cape has some really stunning beaches. And myeloma? Forgotten, except when I check my blog. Mmmh, sometimes it’s nice to be forgetful…!

I know I have been obsessing a bit, ok, a LOT, about the recent VP debate, but I am absolutely infuriated that Sarah Palin was allowed to get away with so many false statements (see La Cootina’s blog for a big one!) and accusations. And with NOT answering questions. Outrageous.

And since when has one of the qualifications for being VP been: don’t say anything TOO STUPID during the one and only VP debate before the election? In my view, this is simply apPALINg.

And here is some more appalling stuff. Take a look at the following excerpt from the VP debate transcript. I randomly chose a couple of sentences pronounced by Sarah Palin:

I think tomorrow morning, the pundits are going to start do the who said what at what time and we’ll have proof of some of this, but again, John McCain knows how to win a war. Who’s been there and he’s faced challenges and he knows what evil is and knows what it takes to overcome the challenges here with our military. Two sentences later, she says, He’ll know how to win a war. 

Huh?

Setting aside the syntactical gibberish, all this “war winning” nonsense is frightening to me…and reminds me of another issue mentioned almost en passant by Joe Biden during the debate, i.e., that McCain wouldn’t even meet with a close NATO ally: Spain. SPAIN? That really stuck in my mind…at the time, I thought Biden must be wrong.

Well, this morning I looked it up. During a September 18 radio interview, McCain was asked if he would meet with Spanish Prime Minister Zapatero and invite him to the White House. In a nutshell (you can listen to the entire interview on YouTube), the GOP candidate responded vaguely that he would be willing to meet with those leaders who are “our friends” but added that he would stand up to leaders who “wish to harm us.” The implication was that Prime Minister Zapatero was among the latter. This bit of news was not well-received in Spain, as you can imagine. Hmmm, and I thought that McCain’s strong point was foreign policy. That may well be, but one thing seems obvious: the word “diplomacy” is not in McCain’s vocabulary.

All this warmongering talk and hollow patriotic rhetoric gives me the heebie jeebies.

Enough!, I say.

I managed to stay awake long enough to watch the entire U.S. VP debate last night. Listening to the comments made by journalists and viewers after the debate and then early this morning, though, I began wondering: “did I see the SAME debate that they did?” It didn’t seem possible. For how it is possible for anyone to assert that Gov. Sarah Palin did “well”? WELL??? Why, she didn’t even answer several of the questions posed to her but instead kept going off on irrelevant tangents, repeating the same things over and over and over again, sometimes even using the exact same words she had used moments earlier. I found that absolutely maddening. And that alone confirmed, to me anyway, that she is not very bright…to say the least.

She sounded like someone struggling with a poorly-memorized series of lessons. Inarticulate, at best. And quite frankly I got sick of hearing her repeat that Obama wants to raise taxes (simply not true). Etc. 

I am sure that she must have appeared “cute” to some viewers, with her little winks and smiles and “you betchas” and “doggone its.” But the truth is, we don’t need “cute” in the White House. We need someone who can actually answer questions and deal with tough issues. 

Do we really want someone like Gov. Sarah Palin in the second highest position in the U.S., just a sneeze away from the presidency? Darn and doggone it, we do not. Just my opinion, of course!

The flight yesterday was long (8 hours plus) but smooth–i.e., no turbulence over the Atlantic and no thunderstorms in Boston when we landed, just a few insignificant clouds…lucky! I read and also played “Tetris” and “Who Wants to be a Millionaire” on the airplane TV screen…ah yes, that was fun (I don’t play computer games anymore, but I used to play Tetris).

How odd to be back in the States…unreal…and I miss Stefano (who stayed at home with the cats) very much, it’s quite bizarre to be here without him, in fact, it would be bizarre to be anywhere without him!…but it’s been great to see my sister after such a long time, and my niece is flying here tomorrow. And it’s so pretty here… 

Okay, I need to go take my quercetin, fish oil and curcumin, then get ready to fight Mr. Jet Lag and try to keep my eyes wide open and my mind on full alert for the VP debate (should be interesting…). So off I go! I will write some more as soon as I get over all this yawnsnoreyawnzzzzz! Ciao!

Our flight for Boston, Massachusetts, leaves early this afternoon…and thunderstorms are predicted in the Boston area for this evening (typical of my luck: of all the days we could have picked to land in Boston, it had to be during the only possible thunderstorm of the entire week…!!!)…anyway, I have just enough time to squeeze in a quick post. Excellent comments left on my IgE post, thanks!, I will have a look at all the links when I return to Italy around October 20^th. Much food for thought.

Same line of thinking (?): the other day I read a report by Dr. Ralph Moss (see: http://tinyurl.com/43gmmm) on the overuse of antibiotics that could possibly lead to the development of cancer. I don’t have time now to provide a summary of the article, but Dr. Moss writes that it appears that the more courses of antibiotics a person takes over time, the greater the risk of developing certain cancers. If you are rushed for time, just read the last paragraph.

Okay, speaking of rushing, I have to rush off to finish packing now. I will post a little something on my blog in a few days…this time from the States! Wow. That reminds me of something: yesterday, as I was saying goodbye to my students, I told them how much I was looking forward to seeing my sister and niece, that I haven’t seen them in more than two years, blablabla. To my surprise, I began choking up, and tears filled my eyes. Even more surprisingly, they were moved, too (well, perhaps not so surprisingly: Italians…the importance of family…you know…!). So we all stood there in a circle, unable to speak for a few seconds. Cute.

Okay, if I want to be on that flight I had better start getting ready! I will be posting but probably not answering too many e-mails in the next couple of weeks (I apologize in advance). Take care, everyone! Ciao! A presto! 

A blog reader, thank you!, sent me a 2007 study on IgE written by an Italian research team. The full study is available here: http://tinyurl.com/4do9nx.

Intriguing, I must say. As a myeloma patient, you tend to read mostly about IgG (my type of myeloma), IgA and IgM…but not much about the other immunoglobulins. I looked up IgE and found that it triggers our body’s response to allergens such as cat dander, dust mites and pollen, and it also protects us from parasitic worms.

Well, I’d never even thought of having my IgE levels tested, so I was particularly interested in this study. The “Discussion” part tells us that This is the first study reporting polyclonal IgE levels in a large series of MGUS subjects and MM patients. To the best of our knowledge, it is also the first study reporting an association between IgE levels and Hb, and, even more interestingly, between IgE levels and survival in patients with hematologic malignancies. (“Hb” stands for haemoglobin, by the way.)

IgE levels are connected to survival? Well, well. Let’s keep reading.

The Italian researchers checked IgE levels in a large number of myeloma patients and MGUS folks and compared the results to a control group in order to determine survival and prognostic factors. They found that IgE levels progressively decreased from controls to MGUS and from MGUS to MM. And patients with high IgE levels lived 2 to 3 years longer than those with low or intermediate levels.

They concluded that high IgE levels are positive predictors of overall survival (P = 0.03 and 0.08,respectively) and strongly correlated with hemoglobin values.

Problem is, though, that total IgE levels are highly variable in general population, depending on many factors, such as age, gender, race, atopy, genetics, immune status, season of the year, tobacco smoke, and concomitant diseases. Further on we read that the Ranges of normal IgE levels are very variable, and no consensus among laboratories has been reached to define normal and pathologic values. Okay, so that could be a reason why IgE has not been taken into consideration in myeloma patients…until now, at any rate.

Another interesting finding: IgE is connected to haemoglobin (Hb) and Beta-2 microglobulin (B2M) levels. The researchers found that a high IgE meant a higher Hb and a lower B2M, and this in turn meant a better prognosisl. 

In the Discussion part we find the following titbit: The positive association between IgE levels and survival can be interpreted as an indication that (a) the immune system of MM patients with higher IgE levels is less deteriorated […]. Ah.

At any rate, because IgE is an antibody connected to allergy response, the possibility that myeloma patients with allergies such as asthma would be more protected than others in terms of disease progression really (!) got my attention since I suffer periodically from bad attacks of asthma (these attacks have returned, by the way, but I think it’s just because of the change in season from hot to chilly) and other allergic reactions. Hmmm, I thought for a second, have I finally discovered something positive about having asthma and rosacea??? Unfortunately, my hopes were dashed when I read that it is unlikely that allergies play a protective role in myeloma. Bummer!

This study is particularly interesting because for the first time ever a group of researchers has found a connection between IgE levels and survival prognosis. The higher those levels, the better off you are. I wonder if I could have my IgE levels tested…just out of curiosity. Or…on second thought…do I really want to know…???

I read a fascinating article yesterday in Science Daily (http://tinyurl.com/449vm3) about curcumin’s ability to reduce the size of blood clots. Curcumin may reduce the size of a hemorrhagic stroke, say Medical College of Georgia researchers. They are using animal models to study curcumin’s effect on intracerebral hemorrhages, bleeding in the brain caused by ruptured vessels.

You learn something every day. I didn’t know that patients suffering from hemorrhagic strokes are treated for symptoms (nausea etc.) but not for the actual cause. The reason is that the blood clot must usually be removed surgically, a procedure that is not advisable, for obvious reasons, in the case of hemorrhagic strokes, which account for about 17 percent of all strokes.

The researchers are studying how to solve this problem using animals (sigh). And here is the interesting part. They dissolved curcumin in corn oil, injected it into the abdomen of an animal model of hemorrhagic stroke three times over three hours, and found that it significantly decreased the size of blood clots. Extraordinary. Hmmm, I wonder why they chose to use corn oil…?

At any rate, they are currently working on developing an intravenous form of curcumin with the idea that it may also help prevent strokes. Intravenous, huh? Well, well, my dream of having intravenous curcumin may be fulfilled sooner than I think…

Last August, while Stefano and I were driving around Burgundy, France, we listened to all sorts of music. We don’t have the same taste in music so this wasn’t an easy task at times, but we do agree on Ligabue, a well-known Italian rock star. So Ligabue became our France 2008 soundtrack (together with Mozart when we wanted something quieter…).

Yesterday, for the first time since we’ve been back, I listened to the Ligabue CD while driving to work. And I was almost instantly transported back to Burgundy…gone was the stressful Florence morning rush hour traffic, gone were the reckless kids zooming between cars on their motorcycles, gone was the unnecessary honking…the pollution…and I was back in France, driving on the country roads of Bourgogne, with lovely green hills and fields all around me.

One of my favourite Ligabue songs is “Voglio volere,” which means, literally, “I want to want.” Some of my favourite lines (my quick translation):

I want a comical world [that's my blog post title]

I want a world that makes us laugh

…

I want to wake up whenever I want to

From all my dreams

…

I want to succeed in not growing up

…

I want to remain awake always

With all of my dreams

…

I want a comical world

That doesn’t give a hoot if it seems ridiculous

…

I want never to say “it’s late”

Or “too bad…”

I want every moment

To be better than the one that has already gone by.

…

I want to enjoy [life] as long as possible.

So do I.

I may not have chosen the most appropriate title for this post, since Italy (Firenze!) is really my home…I grew up here, went through the Italian school system, my friends are Italian, I love this country, Italians, the lifestyle, the food, etc. etc. etc.…

At any rate, regardless of where “home” is!, next week I will be accompanying my parents, who have been staying here with us since June, back to their home in the States. The main reason for this trip is that I haven’t seen my sister and niece in more than two years (I miss them terribly). Plus, flights are a lot cheaper now so I can afford my ticket. And besides, who would pass up an opportunity to see Massachusetts in the glorious fall?

I will have access to a computer at my parents’ house, so I will be posting whenever possible, mostly when I am not getting clobbered at Scrabble…my sister and niece are ferocious Scrabble players (I have no idea why they won’t let me play in Italian…eh!).

Yes, I admit, I can’t wait to leave. Even though I just recently found out that the Myeloma Patient and Family Seminar organized by the Associazione Mario Schirinzi and the International Myeloma Foundation will be held in Prato, near Florence, on Saturday October 18^th…and, can you believe it???!!!, I return to Italy on the 19^th. This means that I will MISS the seminar by just one day. Just ONE day!!! And I can’t change my el cheapo plane ticket. Too bad! I had been very much looking forward to attending this seminar…among others, Dr. Boccadoro and Dr. Durie will be speaking, and Suzie Novis will be there…oh bummer bummer bummer! Okay, no more whining, I promise.

If you live in or near Tuscany and would be interested in attending, though, please see the website Mieloma Help for more information (I have a link to it on the right-hand side of my homepage). Or write to me privately, or leave me a comment, or (!) fill out my (new) Contact form (also on the right-hand side of my homepage). Vittorio sent me the programme, which I would be glad to forward upon request.

Well, there will be other seminars…eh. Mannaggia però…

As I think I have mentioned before, I subscribe to a million newsletters, among which is the Ralph Moss Report. This week Dr. Moss had a report on a shocking story written by Megan Scudellari and published in “The Scientist” on September 16^th with the title “A case of mistaken identity. A cell line used in more than 650 published breast cancer studies may not be a breast cell line after all.“

In order to read the article, I had to sign up (for free) for “The Scientist” (http://www.the-scientist.com/). I then read the entire article. Ah no, “shocking” just doesn’t cover it.

The article begins as follows: Some breast cancer researchers may be studying the wrong type of cancer. A growing body of evidence suggests a cell line that’s been a cornerstone of metastatic breast cancer research over the last 25 years is in fact derived from melanoma cells. Say…whaaat?!

In 2000, a Georgetown University Ph.D. student, James Rae, wrote a paper on gene expression in 60 human cancer cell lines, including the purported breast cancer cell line, known as MDA-MB-435, which he placed with melanoma cell lines, not with breast cancer ones. It’s a long story…what follows are a few highlights.

In 2006, after extensive testing, Prof. Rae and a few colleagues determined once and for all that The true origin of MDA-MB-435 cells is a melanoma cell line called M14. This means (and I keep quoting from “The Scientist” report) that 25 years of breast cancer research on 435 may be based on an incorrect model system. […] Breast cancer hypotheses based on studies of the cell line may be incorrect, and treatments developed from it may ultimately be ineffective. I did a search in the PubMed database and found several studies questioning the continued use of this cell line in breast cancer research, such as this one: http://tinyurl.com/5y2qrc

The question arises: is this case unique? Apparently not. According to “The Scientist” report, Misidentification of cell lines is not rare; a short tandem repeat analysis of 100 human cell lines last year found 18 of the lines were incorrectly designated. But with 435, misidentification may be especially problematic. Because of the cell line’s unrivaled metastatic ability in mice, more than 650 studies using 435 as a breast cancer model have been published (including more than 60 so far this year). Despite growing doubts about its identity, with nothing to replace the model line, researchers have been unwilling to let it go. “There are people vested in using the cell line because they have grants involved,” said Rae.

Ah, money, money…hmmm, I guess it might be tough to choose between keeping your grant money or acknowledging the bitter fact that your research is probably based on a case of mistaken identity (=tongue-in-cheek)…but put yourselves in the shoes of a breast cancer patient currently in a clinical trial based on the Petri dish testing of this particular cell line. How would you feel?…Here is an approximation of how I would feel:

Well, there seems to be a “simple” solution to this problem, suggested by Prof. Rae himself, a breast cancer researcher: “The efforts spent over the years on studying MDA-MB-435 have not been wasted,” he wrote in the conclusion of his 2006 analysis of 435. “The many studies published using MDA-MB-435 as a model for breast cancer could now conceivably be reinterpreted as studies using M14 as a model for melanoma.” You can read the abstract of a study Prof. Rae et al wrote in 2007 here: http://tinyurl.com/48do7h Here it is clearly stated that this particular cell line can no longer be considered a model of breast cancer. But it can be used as a valuable new resource for the melanoma research community.

Aha! There you go! Administer breast cancer drugs (based on MDA-MB-435 testing) to melanoma patients…! I have a million questions but no time to search the Internet to find any answers right now. One of my questions: who is responsible for investigating such issues? What the… is the FDA doing about this? What about Congressional oversight? And why hasn’t this story been picked up by the popular press (I did a quick search, found zilch…)???!!!

I would like to end by quoting Dr. Moss: We are constantly being reminded that this is the era of evidence-based medicine. But if the very cell lines which have provided the foundation for breast cancer research for the past quarter century have now been conclusively shown to be melanoma cells, not breast cancer, how solid or trustworthy is the evidence on which current breast cancer treatment is based? Evidence built on such flawed foundations more closely resembles hearsay than science.

Whom can we trust???