Monthly Archives: January 2011

High fevers…

Stefano had been complaining about not feeling well more or less since Wednesday…and I kept telling him to take his temperature but, no, he didn’t think he had a fever. Men. On Friday morning he woke up feeling simply awful, but he told me that he had to go to work. He didn’t last long. After swinging by our doctor’s office, he was home by lunchtime. By then he had a temperature of 38.2° Celsius (=100.76° Fahrenheit). Eh.

On Saturday morning, it was my turn…not surprisingly, given my itsy bitsy teeny tiny immune system (a feisty little one, though!). Well, to make a long story short, Stefano and I spent the weekend in bed, lovingly nursed by all five cats. Yesterday evening my temperature went up to 39.1° (=102.38° F.). Wowsie. But this morning it is back down to 37.7° (=99.86° F.). And Stefano’s temperature is normal. The worst appears to be over.

I actually feel quite well, even though my body still aches a bit, and my brain is rather foggy …Oh, and I do have an occasional racking/annoying cough that I began treating with an antibiotic on Saturday. My lungs are most certainly my weak point, so I have to be super careful…

But let’s get to the point of this post. You may remember a post I wrote about fevers perhaps causing spontaneous remissions (if not, click here: http://margaret.healthblogs.org/2010/10/05/bring-on-the-fever/). Well, being the incredibly stubborn gal that I am, I decided not to take anything to bring down my fever…unless it went too high, of course. Keep in mind that this was the first time in my entire life that I haven’t taken any Tylenol to bring down a fever…especially a high fever. Seriously. So, yes, it was an experiment. A silly one, perhaps…probably…but boy oh boy, I really got caught up on my sleep! 😉

So how am I going to be able to tell if some of my myeloma cells were overheated to death, annihilated by my high fever? Eh. Good question, to which I don’t have a good answer…

The only thing I can do is have tests done early next week…as soon as possible…

To be really honest, I doubt much will have changed (skeptical, as always)…but I secretly hope to be surprised…

A short history of medicine…

Many thanks to Lori (http://www.loripuente.com/) for posting this, er, short history of medicine on the MMA patients’ listserv. :-)

A Short History of Medicine

2000 B.C. – “Here, eat this root.”

1000 B.C. – “That root is heathen, say this prayer.”

1850 A.D. – “That prayer is superstition, drink this potion.”

1940 A.D. – “That potion is snake oil, swallow this pill.”

1985 A.D. – “That pill is ineffective, take this antibiotic.”

2000 A.D. – “That antibiotic is artificial. Here, eat this root.”

– Author Unknown

Important update on the MRI contrast agent gadolinium…

Do you remember my post on gadolinium? If not, here it is: http://margaret.healthblogs.org/2009/12/13/the-gadolinium-used-in-mris-makes-myeloma-cells-proliferate/ (there is also a corresponding Page, which you can find by scrolling down my Page section on the right).

Well, today, thanks to a blog reader (see previous post, comment # 5), we have an interesting gadolinium update: http://goo.gl/nKdMz Like the ASH 2009 study discussed in my above-mentioned gadolinium post, this ProPublica article also discusses Omniscan, which is a commonly used gadolinium-containing contrast agent…It’s an easy read, so please check it out when you have a sec…

This article reminded me of my December 13 2010 post, the one titled “Why poke a sleeping tiger?” (see: http://margaret.healthblogs.org/2010/12/13/why-poke-a-sleeping-tiger/ Please read or re-read the first part of that post, in particular). The 72-year-old man in the case study had two FDG PET/CT tests done in a two-month period. That gave me pause for thought, especially after I had read the article by Dr. Akin, George Washington University Medical Center, Washington, DC: http://goo.gl/hIctB Please pay particular attention to the last two paragraphs, where Dr. Akin cautions against having unnecessary and repetitive imaging etc. His thinking is akin to mine (sorry, couldn’t help myself…hehe).

Dr. Akin’s comments, in addition to all the stuff I have read in the past five years, lead me to conclude that we must be vigilant at all times and question our doctors if, e.g., they order potentially toxic tests to be repeated after only a short period of time. There may be a really good reason for repeat testing, but we need to know what it is…and we need to know why these tests are being ordered (=of course, I am referring to potentially harmful/toxic tests, not blood tests, etc.)…

Most importantly, under no circumstances should we allow any gadolinium-based crap to be injected into us. We must never ever forget that gadolinium (see my above-mentioned 2009 post) makes myeloma cells proliferate like crazy…

As usual, this is just my opinion…

Random stuff…

Yesterday I finally finished editing the technical translations (concerning the inner workings of leather-processing machinery…ah, you have no idea…zzz!) that I had been working on for days, now. A bigger job than I had anticipated, but, phew, it’s done. I had no time to do any blogging, though, uff. But today I am baaack! :-) And I am going to post a couple of links to random things I have been reading during my work breaks.

First, here is the link to a study I learned about from a Facebook friend (thanks!): http://goo.gl/rI9fq Yes, yet another MGUS-SMM progression to MM study. Hmmm, they seem to be popping up like dandelions these days, don’t they? That is good, of course! The more we learn, the better off we are. And this study is also a relatively easy read. If you don’t have time to read the whole shebang, though, just jump to the Summary at the end.

Here is a particularly interesting titbit, which you can find in the paragraph titled “From ‘Multiple Myeloma Without a Progressive Course’ to Smoldering Multiple Myeloma”: basically, before 2003, there was a bit of confusion on how to define asymptomatic myeloma. Some studies, e.g., made a distinction between SMM and IMM (or indolent myeloma). This lack of consensus means that, Due to these varying definitions, one has to be cautious when assessing results across different studies. In fact, it is very problematic to compare SMM data collected prior to 2003, the year that the International Myeloma Working Group (IMWG) released a consensus on the specific diagnostic criteria for the known monoclonal gammopathies. By the way, IMM has now been lumped in with MM, whereas SMM is defined as “asymptomatic myeloma.” I must say, I found the news about how difficult it is to judge SMM data before 2003 a bit troubling. Too bad!

If you have SMM, please make sure to read the paragraph titled “Current Clinical Recommendations.” I was interested in what Dr. Langren had to say about the use of conventional chemotherapy in SMM: Using standard chemotherapy in SMM, early treatment has not been found to delay progression to active disease and overall survival. There you go…

She then spends a few words on that simply outrageous (hmmm, I really must find a synonym for “outrageous”…), still ongoing Spanish SMM-chemo trial. She comments that it is still impossible to determine if early treatment improves overall survival. Until we know the answer to this important question, we can only speculate whether early treatment has the potential to cure SMM, or if SMM should be classified as a chronic, asymptomatic disease state requiring maintenance therapy. Well, “speculation” is not good enough for me…no siree!

Then I read something that made the hairs on the back on my neck stand up (and freeeeeeze!). My emphasis: At the same time, we do not know if early treatment may facilitate selection of aggressive clones that are more capable of competing in the treatment-altered microenvironment (Figure 1). Because none of these scenarios has been proven true, it is very important to conduct well-designed correlative studies in clinical trials aimed at treating SMM patients.

Very important??? Why, that is possibly the biggest understatement I have read so far this year. I don’t know how you feel…but I would most certainly NOT care to anger my myeloma cells to the point where they would/might become more aggressive…Forget it, not happening…

This study does nothing but confirm my cautious approach to SMM: do NOT poke the tiger! By the way, I am not suggesting that those of us who are in the high-risk-for-progression group should simply sit back and wait. No, I very strongly believe that we can be proactive in many ways–diet, supplementation, laughing like a drain (I just learned that expression, hehe), etc… But we should avoid chemotherapy at this stage…No, not even in a clinical trial setting, especially if any of the researchers have a connection to the big drug companies that are funding the trial (as in the case of that confounded Spanish trial). As I have said over and over again (and will probably say it again!), early treatment in asymptomatic myeloma is too bloody risky. Case closed. 

Now for something entirely different. Have you ever heard of “fenugreek”? If not, see http://goo.gl/ML9Iu I have used it in some of my Indian dishes…curries, e.g. Fenugreek is a plant, but the parts we use in the kitchen, as far as I know, are its teeny tiny seeds (see the rather blurry photo I took of my own organic fenugreek seeds).

But there is more to fenugreek than I thought: http://goo.gl/CjIQu According to this “Telegraph” article, fenugreek seems to have a rather powerful antiviral activity (like curcumin!)…so much so that it might help prevent our developing colds in the winter months. The volunteers in an unofficial-sort-of-study, half of whom already had cold symptoms, took a half teaspoon of fenugreek seeds twice a week (boy, talk about easy peasy!). The symptoms experienced by the “cold-ridden” folks improved significantly, whereas the people who usually developed colds in this period remained healthy. Interesting, no?

Since I am not one to shy away from tasting non-toxic substances that might be good for me, I decided to try some of these seeds. To me, they tasted a bit like, well, burnt celery…Yes, I know, that sounds terrible, but I can assure you that it was not. Not really. What I found a bit unpleasant was their extreme crunchiness…So I think it might be best to cook them, not eat them raw.

At any rate, since a simple cold can be potentially quite dangerous for us MM folks (more often than not, my colds quickly turn into bronchitis), I am definitely going to try eating some fenugreek seeds from now on. After all, they can’t hurt me! :-)

You’ve got opposable thumbs!!!

Hello there!!! Ciao a tutti!!!

Well, I thought I had finished last week’s translations, but no, I had to edit them a bit more today. And now, to be honest, I am slightly too tired to post about an interesting study that I read this morning during a break. Soon, soon, though…

In the meantime, I hope you will enjoy this photo of Pinga waving a big (& rather sleepyzzzzzz…) “hi!” to everyone AND this video:  http://goo.gl/fEfmr.

I think I might already have posted the link to the “untranslated” video…But this is a much funnier version, thanks to Chris Cohen’s “translation”… :-)

 

ROTFLOL!!!

My cousin (thanks!) sent me the link to a video that made me laugh out loud…I mean, REALLY LAUGH OUT LOUD! 😆

This is definitely one of THE funniest, and at the same time most adorable, videos I have ever watched on YouTube: http://goo.gl/3PNPz (And hey, I am not even a dog person…) Enjoy!!!

(I have finished my translations…so life is getting back to normal…phew!)

Renewing my healthcare exemption…

I had to take a break from translating this morning in order to find out what documents I needed, if any, to renew what in Italian is called an esenzione, that is, an exemption from paying a small fee, called ticket (no really, that is what it is called; it is pronounced “teekit”) for tests, hospital care, prescription medicines and so on.

Since I don’t have much time to explain all this in my own words, I will copy and paste part of a paragraph from Wikipedia that gives the gist of how the Italian healthcare system works (as a cancer patient, I belong to one of the below-mentioned “various categories” that are exempt from all healthcare-related payments):

According to WHO in 2000, Italy had the world’s “second overall best” healthcare system in the world, coming after France, and surpassing Spain, Oman and Japan. In 1978 Italy adopted a tax-funded universal health care system called “National Health Service” (in Italian: Servizio Sanitario Nazionale), which was closely modeled on the British system. The SSN covers general practice (distinct between adult and pediatric practice), outpatient and inpatient treatments, and the cost of most (but not all) drugs and sanitary ware.  The government sets LEA (fundamental levels of care, Livelli essenziali di assistenza in Italian) which cover all necessary treatments, which the state must guarantee to all for free or for a “ticket”, a share of the costs (but various categories are exempted). You can read more here: http://goo.gl/63vMZ

In February of 2006, that is, after my MGUS became MM (on paper, you see, there is no distinction between MM and SMM, so I am officially a MM patient here), I applied for, and was granted, a healthcare exemption, which lasts for five years. This has meant that for the past five years I haven’t paid one cent for any prescription drugs (antibiotics, e.g.) or for any blood/urine/other tests. When I was still MGUS, though, like all healthy Italians and residents of Italy, I paid a “teekit.” I think the most I ever paid was more or less 100 euros (= about $ 130), for my bone marrow biopsy in 2005. Of course, given the choice, I would rather pay the healthcare “teekit,” since that would mean I don’t have cancer anymore…!

Okay, back to us. Yesterday I phoned my local health office, = ASL, to see if someone could tell me what steps I needed to take to renew my exemption. “Ah, signora, I have no idea. You must call back tomorrow morning,” I was told by a very nice but not very helpful man. So I called back this morning and was told the following: “Ah, signora, you must come here yourself and go to this-that-and-everything healthcare office.” “Can’t you tell me over the phone or find someone who can?” I asked. “No, sorry.” Okay. Fine. I grabbed all my health-related documents and went over to the ASL office.

A helpful woman in the this-that-and-everything healthcare office told me that I cannot renew my exemption until after it expires…next month. The day after it expires, apparently all I have to do is show up at the front desk of the ASL, and my exemption will be automatically renewed…

I don’t have to show any proof that I still have cancer. I don’t need another BMB. I don’t have to be seen by an ASL doctor. No. This will be easy peasy.

The first renewal, which will give me another 5 years, is automatic, I was told. But my second renewal, five years from now, will not be so easy: I will have to make an appointment with an oncologist, blablabla. I found this rather interesting from a psychological point of view. Could it be that if you have myeloma for more than 10 years, they think you might be faking it? Hmmm. No idea. In fact, perhaps all types of cancer are treated the same way. I should have asked…but it didn’t occur to me at the time. Well, all I can say is that I am relieved to know that it won’t be too much of a drag to get this thing renewed…

Now, before I go on to my final considerations, please don’t get me wrong. I love living here. Indeed, I cannot really see myself living anywhere else, except perhaps in Canada or Massachusetts or Vermont. I don’t mind the occasional Italian bureaucracy absurdities…I grew up here, after all, so I am used to them. And in fact I was chuckling as I left the ASL office…

But really, on second thought…Couldn’t the simple information about my exemption have been given to me over the phone? Was it really necessary for me to go over to the ASL office? Now, I am not complaining about the time I wasted, since I can work on my own schedule…But what about people with jobs? Why make them take time off work just to let them know that they will have to come back later…taking more time off?

Makes no sense.

But that is the way things are here…sometimes. You need a good dose of pazienza…sometimes. But hey, it’s an incredibly small price to pay for living in a lovely country whose healthcare system ranks “second overall best” in the world (World Health Organization, 2000). And there are many other perks, too! :-)

The mad translator…

You make plans, then something happens, and all your plans go out the window. That is what happened to me this morning, when I received not one, not two, but THREE (!) translations–two of which are extrrremely technical–that I must finish by the end of this week. Gulp!!!

This means that I probably will not be publishing any research-based, serious posts until next week…Oh well. That’s how it goes. Hey, don’t get me wrong…we need the money, so I am happy to have the work! :-)

This translation, however, could drive me batty…to the point where I might end up trying to do this (see video) to my own kitties: http://goo.gl/V8GS5 Yeah, right. 😆