Monthly Archives: April 2013

I’ll tickle your catastrophe…

Well, after spending the morning running errands (buying cat food etc.), I’m finally getting our stuff together. It’s going to be A LOT COLDERBRRRRR in Edinburgh, which I am sure will do wonders for my cough, ehm!, but I’m prepared. Plus, I’ve put together an entire truckload of medicines and supplements, so we’re covered for every type of ailment you could possibly imagine, except perhaps exploding head syndrome… 😉

I’ve also firmed up plans to get together with my blog reader. We’re meeting for the first time, after corresponding for years, and I’m sure it will be heaps of fun. Number one: she is a cat person, too. Number two: she is taking us to Bass Rock, where she’s been many times, to see…PUFFINS! I mean, hello?, how could we possibly NOT love each other instantly? :)

Okay, I have to go back to packing and doing some touristy research online, but FIRST…

1. Here’s an adorable video showing a female cat and her loving, attentive, rather sharp-clawed, er, suitor = a sloth, yes, that’s right, a sloth! Amazing creatures, sloths…have always fascinated me… http://goo.gl/tQkYN Awwww, I want to cuddle with a sloth now…and get a nice back scratch, too…I mean, check out the length of those CLAWS!!!!!!!! Yikes. 

2. And here is a HILARIOUS (this morning I laughed OUT LOUD. Thanks, Delilah!!!) list of Shakespearean insults with a…twist. Too funny…Ah, here’s the link: http://goo.gl/ACx4w  (These are all for you, Dad = the great Shakespeare maniac in the family!!!)

Well, that’s it for now. We’ll be back in Florence on May 1st. That doesn’t mean I will be absent from the blog all this time, mind you…I just found out that we will have Wi-Fi service at our bed & breakfast in Edinburgh, so I might even write a quick post between now and then…

In the meantime, take care, everyone! And remember to laughlaughlaugh! And…tickle that catastrophe!!! (See the second link to understand that one, by the way…hehe)

Ciao! :)

Life goes on…

Day after tomorrow Stefano and I are leaving for Edinburgh, a holiday we’d planned a long time ago. We’ll be gone for about a week (a good friend is moving into our house and taking care of the cats, as always).

Given what we’ve been through in the past few weeks, it will be really good to get away, I must say. Since we both need a rest and a break, I’ll probably not be online during our holiday, except to plan our daily itinerary and make sure we’ve seen all the sights and been to all the best tea rooms…

Oh, before I forget…I’m definitely over the brief flu-like episode I had (last Friday), and I’ve finally begun laughing again, which always helps. This morning, taking breaks from work, I watched this amusing video, e.g.:

http://goo.gl/vsjuc

And here I thought my cats were the nuttiest in the world…But THIS cat beats them all! :)

P.S. Many many thanks for your kind messages and comments. Much appreciated! 

Never say never…

Just a little while ago I was writing (boasting!) that I haven’t been really ill in ages and haven’t had an antibiotic in ages…

But first things first.

On Tuesday night, after a long period of illness and suffering (especially in the past few weeks), my father-in-law died in a Florentine hospital. An awful, awful period for all of us. 

On Wednesday afternoon we were at his wake, and that’s when I began feeling a bit “odd.” But it wasn’t until Thursday morning that I began coughing. Ah yes, THE cough. The familiar cough. I had to nip it in the bud. I called my family doctor who agreed that I should immediately start taking an antibiotic.

I actually didn’t feel too bad on Friday morning. And in fact I went to my father-in-law’s funeral in the afternoon.

After the funeral, Stefano and his brother left for Southern Italy, where my father-in-law is now buried. I was supposed to go with them, but the doctor had advised me to stay at home, just to be on the safe side. Luckily, I followed his advice…

That night I tossed and turned and had a very hard time sleeping…and on Friday morning I woke up with a fever of almost 101° (38.3° Celsius)…and nausea and weakness. I spent the day in bed, surrounded by my cats…

Well, today I’m fine, I really am. I still have a bit of a sniffle and one of those sporadic, annoying, itch-in-the-throat coughs, but the fever and nausea (thank goodness!) are completely gone…So it was just a 24-hour bug. 

Now, not that we need any more proof that stress is extremely bad for us immunocompromised folks, but that is why I’m telling you this story today. Of course, sometimes we can’t avoid stress…as in this case, obviously…

Well, I just finished watching a movie and now I’m going to make myself a cup of organic dandelion root tea with Manuka honey. But I thought I’d post this quick note on the blog, in case some of you were wondering why I’d disappeared…

A case of myeloma associated with the Epstein Barr virus in an 11-year-old girl…

Epstein Barr, or infectious mononucleosis. Here we go again.

It’s been ages since I last wrote about a possible viral connection to the insurgence of MGUS…At one point, a few years ago, I even had the brilliant (?) idea of asking you all to let me know if you had had a similar experience to mine. What happened to me is that I began having what I now know were possible symptoms of MGUS (mainly, fatigue fatigue fatigue) while I was in grad school, right after I had recovered from a bad case of Epstein-Barr (= EBV, from now on)…This would have been April of 1995 (I’ve written about this before on the blog…just do a search for “Epstein Barr”).

After my appeal on the blog, I received a number of messages and comments, but I just couldn’t detect a trend or anything that might be useful. Not at that time, anyway. So I just put all that data away and, well, eventually, forgot about it. After all, I reasoned, even if I discovered that my MGUS, now SMM, is connected to my bout with Epstein Barr, how would that help me/us now? I mean, it’s a bit too late for prevention, right?

However, in the past few days I’ve renewed my interest in EBV. What happened is that I came across a Mexican case report about an 11-year-old girl diagnosed with myeloma (!) associated with, yes, EBV: http://goo.gl/othmW

I was able to read the full report, so I’ll be able to give you a bit more information. What we know from the abstract is that the above-mentioned girl was 9 years old (!!!!!!) when a plasmacytoma was found at the base of her skull. She tested positive for EBV but had no cancer cells in her bone marrow at that time. She was given steroids/local radiotherapy, and her symptoms disappeared. For a while.

Two years later she went back to the doctors because of generalized bone pain. Unfortunately, bone lesions were found in several areas of her body, including the skull, ribs, humerus and spine (and various other bones, too). By this time she had 95% plasma cells in her bone marrow. Incidentally, the full study mentions that gadolinium was used as a contrast agent in her imaging tests…Uhm.

Anyway, this was her diagnosis: plasma cell myeloma with kappa chain restriction/IgA+ at a Durie/Salmon clinical stage of IIIA.

One good thing: she didn’t have any kidney damage. She began treatment with dex, thalidomide and zoledronic acid….and, in February 2012 (at the time the study was written), she was awaiting a stem cell transplant.

An important bit of information: EBV was found in the nuclei of 70% of the little girl’s myeloma cells (= two different BMB specimens). 70%!

According to the authors, EBV can cause a polyclonal B-cell expansion, which can eventually develop into a monoclonal malignancy. Eh??? What the haystacks does that mean? Okay, step by step:

  1. B-cells or B lymphocytes, as we know, are the cells that become malignant in myeloma. They get damaged and start proliferating like mad, totally out of control.  
  2. I thought precursor cells were stem cells, but I checked, just in case. No, they aren’t. While precursor cells are similar to stem cells, they’re more specific. The simple difference between stem and precursor cells is that the former can “reproduce” themselves forever and ever, but the latter can’t.

Simply put: the EBV virus appears to be able to infect (and hide inside the nucleus of) these B-cell precursor cells, which activates a whole series of unfortunate events that eventually lead to the development of myeloma.

Now, the authors note that the association between multiple myeloma and EBV seems to be a rare occurrence. Yes, that may well be true…but then, how many people newly diagnosed with MM or MGUS or SMM get routinely tested for EBV? Were you tested for EBV at the time of your diagnosis? Probably not. I certainly wasn’t.

Here’s some more food for thought:

  1. EBV frequently doesn’t cause any symptoms. That is, most people are EBV carriers but don’t know it.
  2. Something like 95% of the world adult population has been infected with the EBV virus. Yes, that’s right. 95%.
  3. However, 95 % of the world’s population does not have myeloma or MGUS or SMM….otherwise it wouldn’t be considered a rare type of cancer, right?

That said, why couldn’t some of us have gotten this icky thing after a bout with EBV…I mean, why couldn’t EBV possibly be at least one of the causes? After all, I read somewhere that it only takes one wacky cell…and bam!, eventually we have myeloma (or MGUS or SMM).

It all begins with just one wacky, abnormal cell.

So here are my final questions of the day:

  1. what if the EBV test were part of the routine tests we have to have when we are first diagnosed with MGUS, SMM or MM?
  2. What if an association could be established, at least for some of us?

If (again, for some of us) an association were found, then perhaps our myeloma researchers could devote a bit of their time to studying this issue. See: http://margaret.healthblogs.org/2010/10/28/pieces-of-the-viral-puzzle/

Well, I’m intrigued (again!)…and I want to do some more digging. I’ve found a few, recently published studies on this topic. Furthermore, as I mentioned earlier, when I have a bit of time (SIGH!) I’ll go back and look at the data you have already sent to me. This time, I might be able to put the puzzle together, in spite of the missing pieces…

And that is precisely why I’d very much welcome your thoughts and experiences and help…again!!! Thank you!!!

“Your Italian…is perfect!!!”

On October 25 2011, I wrote about an unusual encounter  I’d had at the supermarket here in Florence. In fact, before reading any further, please click on this link (if you don’t read my 2011 post, you see, this one won’t be as amusing…Don’t worry, it’s a quick read!): http://margaret.healthblogs.org/2011/10/25/encounters/

So here’s the thing. JK and I have been trying to get together for, gulp!!!, a year and a half now (how did THAT happen???). It’s just that, for one reason or another—she’s busy, I’m busy, that sort of thing—we have somehow never managed to find a mutually convenient time…And time passes…ah yes indeedie…

We do keep in touch, though, mainly via Facebook…She’s an absolutely lovely person (and, ehm, I’m not writing that because she’ll be reading this post! :) ).

Anyway, getting to the point…Today I made a quick, unintended trip to the supermarket. All I really needed was some milk for my cappuccino tomorrow morning (an absolute “must” before going to work!), but, you know how it goes, while I was there I picked up about a dozen other items, including cat litter.

Then, after putting the second bag of litter into my shopping cart, I looked up, and there she was…JK, marching towards me, holding a few items in her arms. Just like when we first met.

We laughed and hugged, and she joked, “you know, we should really stop meeting like this!” Hehe.

She said she’d caught a glimpse of me earlier in the store but then had lost me…But of course she figured she’d find me in the cat litter aisle. Good thinking, Sherlock! :)IMG_1022

We stood there gabbing for quite some time…blablabla about this and that, an unexpected mutual acquaintance, colleges (yes, it turns out that we have a college in common, small world!), curcumin and more blablabla.

At a certain point, a supermarket employee asked us to move slightly so that he could scan some items behind us. We obliged, of course. More blablabla. Then we said goodbye, and JK left.

I looked down at my barcode scanner and realized it hadn’t given me a 30% discount on my cat litter, so I turned to the employee and asked if he could help me. To my surprise, he looked absolutely stunned. He just kept looking at me, without saying anything. To cover this rather awkward moment, I launched into my “I have six cats and need the discount on this litter” story. As soon as I stopped talking, the first thing he said to me was:

Ma signora, il Suo italiano…è perfetto!!!” (= But signora, your Italian…is perfect!!!)

I looked up at him, perplexed, “Mi scusi?” (= Excuse me?)

Signora, il Suo italiano…è perfetto!!!” he repeated. (= Signora, your Italian…is perfect!!!)

For just a blink of a nanosecond, I’d been so totally focused on the litter issue that I’d forgotten that, until a few seconds before, he’d heard me speaking English with my friend. Lickety split English, to boot. So, you see, he wasn’t expecting my Italian to be so…er…perfect. 😉

Another blink of a nanosecond. Then I smiled and replied, “That’s because I’m bilingual. I’m a U.S. citizen, but I grew up here in Florence.”

Then I got my discount. 

After chemo…chemo brain…

I just finished reading a fascinating article published in “The Scientist” a few days ago. It discusses cognitive problems in chemotherapy-treated cancer patients…what we call “chemo brain.” The section discussing children who receive chemo was of particular interest to me, since I had no idea that “chemo brain” affects many of them as they get older. Sad.  

Here’s the link to “After Chemo”: http://goo.gl/uS9Fk

Unlike the author of the article, = a professor of pharmaceutical sciences at Temple University, though, I’m not optimistic. Not now, anyway. Not as long as there is no attempt to protect our healthy cells from damage and/or death during the administration of chemotherapy and radiation treatments. No…as long as we wear big pharma blinders, nothing is going to change…And cancer patients will continue to suffer from side effects, both cognitive and physical…

The Vermorken study (see yesterday’s post, one of my strongest to date, I think…) was really enlightening in this sense. I mean, here we have some researchers telling us, in paragraph 5.5, that anti-angiogenic drugs eventually make myeloma cells more “invasive,” that is, more aggressive. So yes, sure, these drugs may delay the time to progression, but ultimately the effects are going to be devastating for the patient…I don’t know what you thought of that scenario, but I didn’t care for it one bit. 

The obvious implication is that these drugs should NOT be used to treat myeloma or any other type of cancer…

But here’s the problem: there’s very little that can replace them. Most myeloma drugs are anti-angiogenic, you see. And so it’s a vicious cycle. But please don’t tell me, Dr. Vermorken, that curcumin might possibly be as dangerous as these toxic substances that require special handling, special chemotherapy gloves and gowns, even safety goggles, special chemo disposal bins, special chemo spill kits and so on and so forth. There is no comparison. 

The “After Chemo” article, the Vermorken study and other things I’ve read throughout the years have done nothing but cement my firm conviction that there needs to be a better alternative–something that is lethal to cancer cells but also less toxic to healthy cells. 

It doesn’t exist? 

Fine. Well, it’s time to find it. And it’s also time to lessen the obvious and, frankly, disquieting hold that big pharma has over our myeloma organizations and specialists. And over some MM patients, too, I hate to say…We need to shake the status quo, which clearly isn’t working. Not in the long-term and not for most, anyway…

Well, while we’re waiting for things to change (probably won’t happen overnight, though, so don’t hold yer breath! 😉 ), let’s take steps to protect our healthy cells. That much we can do. 

As you know, I support integrative treatments, which combine both the conventional and the alternative worlds. If I were to progress to myeloma at some point and decide to start some sort of conventional treatment, I wouldn’t stop taking my supplements, especially curcumin. Oh no. If anything, I’d increase my intake. 

Obviously, I hope I’ll never be faced with that decision…

“Curcumin for monoclonal gammopathies. What can we hope for, what should we fear.” My comments on the Vermorken study, 2012. Part III.

Work always seems to get in the way of posting anything serious, including this final rant, uhm…I mean, final part of my three-part series on the 2012 Vermorken et al study. But I finally got to it, even though I really should be working, y’know…Cat food is expensive! 😉

Here goes! 

CHAPTER FIVE. The part that really got my knickers tied in a knot is in paragraph 5.2…the part about immunosuppression: Patients with MGUS, but less so than those with myeloma, have an increased risk of infection. See my March 22 2013 post for my own experience…no point in going over it again. 

Speaking of “again,” here the authors again (AGAIN!!!) bring up the case of ONE, SINGLE MGUS patient that they’d already used as an example back in 2010. You’ve got to be bloody joking. Boyohboy, you should have seen my face when I read this part. 😯 I mean, could they possibly have done no better than THAT, after TWO FULL YEARS of research (since 2010, I mean)??? Could they not have come up in the meantime with ANYONE ELSE, even a member of their own team forcryinoutloud!, to test their shaky-at-best theories on turmeric or curcumin (I wrote both because in their 2010 study, they seemed a bit muddled about the difference between the spice and its active ingredient)? If I had access to a lab, as they most certainly did, I’d be testing myself all the time and recruiting other people willing to be tested…I mean, you can do a lot in TWO YEARS. A lot…

Anyway, as they had already told us in 2010zzzzz, the above-mentioned patient’s daily intake of turmeric for intestinal complaints repeatedly led to bronchitis. Now wait a sec. Turmeric is used to treat bronchitis in Ayurveda, so this part makes subzero sense. But I’ve already written about this particular study (see my late March, early April 2010 posts), so I’ll leave it at that… 

Oh wait, except I wanted to note that, while the authors of this study lament the fact that the Australian MGUS curcumin trial had only a small number of participants (25 or 26 MGUSers, as I recall…), it was perfectly okay for them to make pronouncements on the dangers of turmeric based on ONE SINGLE patient (= a guy with a long list/history of ailments, to boot…Just check out the 2010 case report…). So in the end we have, ah, let’s see: 26 cases versus…ONE?

Grump…

So, let’s recapitulate: Vermorken et al use the same patient as an example in two separate studies written two years apart. I find that absurdly astonishing…beyond comprehension, really. So I’m going to repeat my question: is that the best they could do? In two years’ time, could they not find another patient or, better still, a group of curcumin-taking patients who developed some side effects that would prove their points on the dangers of this spice? 

I guess not. 

And that takes me to my next point. If we were to worry about everything that inhibits our T cells, thus depressing the immune system, we would have to stop aging, for one thing. Oh yeah, as we get older, our T cells decrease and are also not as effective as they used to be.

But, a bit more seriously now, we’d also have to avoid taking a lot of helpful medicines, including glucocorticoids. ”Oh yes, m’am, that’s really too bad about your pesky allergies and asthma, but you see, based on the perhaps-totally-unrelated experience of one single patient in the Vermorken study,  you should really avoid taking glucocorticoids because they might depress your immune system. And yes, you’ll just have to put up with the itchy hives and the wheezing, sorry!”

I mean, c’mon…

And another thought just popped into my mind. How come Vermorken isn’t worried about the clinical trials that are already testing or are about to test drugs such as lenalidomide (Revlimid) and dexamethasone, just to name a few, on smoldering myeloma patients? These are immunosuppressant drugs…tested on SMM folks. Now why isn’t Vermorken concerned about these drugs’ immunosuppressant effects, which I imagine would be far stronger than those of curcumin??? (See my April 1 2010 rant and rave on this topic.)

One of these trials, as you may recall, is the Spanish SMM chemo study (grrrrrr!!!). Well, I recently found an interesting bit of info that I want to share with you: the Mayo Clinic and the Spanish PETHEMA can’t even agree on which SMM folks are considered to be high-risk. No kidding. Check this out: http://goo.gl/2D7S3 Oh yeah, I’m angry. You can bet your favorite polka dot mittens on that. It’s a bloody disgrace…

And I say this with much regret, believe me. I wish it weren’t so. I really do. But what else can we conclude?

Okay, I’ll stop ranting for a second and get back to our topic at hand.

If you’re curious to know which conditions are treated by glucocorticoids, this page at Drugs.com will give you an exhaustive list: http://goo.gl/1f8Tx…from Acute Lymphocytic Leukemia to allergic reactions all the way to uveitis…oh, all sorts of ailments… 

In a comment on my March 25 2013 post, Joao (thank you!) reminded us of the CAMP protein, which is vital to our innate immune system and, well well well quelle surprise (not!), is stimulated by…drum roll!!!…yes, you guessed it!, is stimulated by curcumin: http://goo.gl/ZjhLH Vitamin D stimulates CAMP, too, by the way. In fact, my intake of both (plus Nigella sativa) might explain why I am so healthy (knocking on wood, here!)…

So much for the issue of immunosuppression. I think I’ve said more than enough. 😉

CHAPTER SIX. On to paragraph 5.5. “Could curcumin induce a more malignant phenotype?” Wow, that’s a real eye-grabber. Let’s take a closer look.

Here the authors briefly discuss VEGF, which is a close friend and “feeder” of Mr. Myeloma. That’s precisely why VEGF is a target in conventional myeloma treatment. Unfortunately, though, at some point, myeloma cells become resistant to these anti-VEGF drugs. And these resistant buggers are more invasive. Okay, that’s clear. 

But the authors imply that, since curcumin also inhibits VEGF, it might create resistant cells and a more malignant phenotype…just like those potent toxic conventional drugs. Huh? That’s all the “proof” they provide??? Just a hypothesis???

I have two observations to make:

1. if the conventional anti-VEGF (= anti-angiogenesis) drugs create more resistant and aggressive myeloma cells, then they should certainly not be used to treat myeloma…Translated, that means: no more thalidomide and analogues (the recently-approved-by-the-FDA pomalidomide/Pomalyst, lenalidomide…). No more bortezomib (Velcade) or other proteasome inhibitors. No more cyclophosphamide. No more zoledronic acid (Zometa)…ah, yep…Zometa inhibits the myeloma-feeding process of angiogenesis, too. Well, I’ll stop here. You get the gist. 

2. now, if a hypothesis doesn’t need to be backed up by any tangible evidence (and in this particular case, as they did in paragraph 5.4 sigh, the authors bring forth no proof whatsoever that curcumin might induce a more malignant phenotype), does that mean that I can just blurt out any kind of crazy or random hypothesis about, well, about anything? What if I were to state that curcumin cures myeloma? Based on Vermorken et al, I don’t need to back up my statement with any proof. All I have to do is write a study about it. 

Yes, of course it’s absurd. That’s precisely my point. 

Sheesh. 

Let’s keep going. I have a final clincher… :)

Conclusions. Vermorken et al continue to insist that there is a “dark side” to curcumin. There may well be, but it isn’t immunosuppression. And here we do have proof. 

As for so-called “controlled clinical trials,” well, in a perfect world, I’d agree that these would be of the utmost importance. But we don’t live in a perfect world, to say the least. If you haven’t done so already, please have a look at my March 11 2013 post on “Publication bias.” The TED talk to which I link in that post is a real eye-opener…Obviously, this doesn’t mean that we should start testing potentially dangerous stuff on ourselves. It just means that we shouldn’t live with blindfolds over our eyes. We should be aware that negative data frequently doesn’t get published. That’s all I’m sayin’… 

MY FINAL CONSIDERATIONS. I always find the “Conflict of Interest” part of a study most illuminating. Remember all the raging posts I’ve written about the Spanish SMM trial…remember how many of the physicians/researchers involved in that trial had incredibly obvious ties to Celgene, the maker of one of the drugs used in the trial (one of them, as I recall, was a Celgene employee, not even an MD!)? Yeah. My blood still boils when I see a reference to that trial, grrrr. 

Well, as for this study, in addition to looking at the Acknowledgements, please don’t neglect to check out Prof. Andrès’ associations: “He has received several grants for lectures, studies or expertise from laboratories.” Hmmm, which laboratories? It’s worth it to list them all, methinks: 

GlaxoSmithKline (that’s what GSK stands for), Amgen, Roche, Chugai, Vifor, Ferring, Sherring, Genzyme and Actelion…

Hey hey hey, lots of Big Pharma, here. Gee wiz. Is there anyone out there who has NOT been “contaminated” by big pharma money? 

But, of course, “this work is free of any such association.” Of course it is. That malicious thought didn’t even pop into my mind. Or…

Did it?