Staying in touch…

Back in 2007, when I first began blogging, there weren’t any “alternative treatment” myeloma blogs out there. Indeed, unless I’m much mistaken, that is still the case…Anyway, I figured my blog would never become popular, it would be read only by a handful of people and I would receive mostly heaps of criticism…

The exact opposite has happened. Hundreds of people now read my blog every single day. Several hundreds, in fact. Amazing. And my experience with curcumin, my research, my silly stories and my at-times-rather-loopy experiments have been met only with interest, curiosity, enthusiasm and kindness…

Furthermore, some of my blog readers have become friends in real life…Sherlock, Paul, Diane and a few precious others…

But I’m not…indeed, I cannot be in touch with everyone who writes to me. That would be literally impossible, even if I did nothing else but compose e-replies all day long…which of course I cannot, because of my job and various other commitmentsblablabla…

Yet every so often a really lovely thing happens…for example, after not hearing from you (=generic “you,” I mean) for some time, even years, you send me a note, letting me know how you’re doing, how curcumin (or whatever) has worked for you, what the weather’s like in your neck of the woods and so on. Or you send me a sweet message, a joke, a link to a hilarious video or some funny cat-related thing… 🙂

Then sometimes, like today, I stop and begin wondering (=just like Pinga in this photo) how everyone out there is getting along. I haven’t heard from many folks in quite some time now…I wish I could write to everyone, but that, alas, would be literally impossible…

And so we get to my wish of the day:

Whenever/however/wherever, please write me a note, even a few words…just to let me know how things are going. If you don’t have my e-mail address anymore, please use the “Contact” form on the right-hand side of the blog. I would mainly like to hear from those of you who haven’t written to me in months or even years. I can’t promise I’ll write back…but I’ll try!!!

Of one thing you can be certain: your note will be read and much appreciated…

And thanks, thanks so much!, for all the support you’ve given to me throughout the years… 😀

A failed experiment…

Sometimes you just have to admit you’re wrong and get on with it. And that is why I’m admitting publicly that my Manuka honey experiment (see my Sept 2 post) didn’t work…at least, not entirely…

In part or perhaps even mostly because of my own stupidity.

You see, I finished one small jar of Manuka honey UMF 20 and then opened another, which, I realized only some days later, was only UMF 12 (!). Oh well. So instead of steadily improving, as it had been, my cough slowly started getting worse…and day before yesterday the colour of my “output” was no longer clear. That is when I discovered the “UMF 12, not UMF 20” business. Draaaat!

That said, I should mention a couple of things:

  • My cough never reached the point of giving me that familiar & horrible “oppressed” feeling in my chest (=chest congestion…ugh). This time I didn’t experience any trouble breathing…and I didn’t have a fever or any discomfort/pain other than the occasional bother of the coughing fits (=increasingly frequent in the past couple of days). I attribute these positive events to my Manuka intake.
  • My cough also didn’t slow me down in any way. Energy levels: normal. Again, in my opinion, this must have been thanks to the Manuka…

But I had to take into consideration a couple of important facts: 

  • I’m leaving for the States in a couple of weeks, so I can’t take any risks. There is an important time constraint here = only two weeks to get completely over this “thing”…
  • My extremely compromised, almost non existent immune system is a feisty little thing, but sometimes it needs some help…
  • Last but not least, my Stefano was worried…

After carefully considering all the pros and the cons, yesterday morning I began taking an antibiotic. Yes, an antibiotic. The very thing I wished to avoid. Sigh. Of slight comfort was the fact that my family doctor, who strongly supports my natural healing approach, agreed that I should move onto an antibiotic…

Well, yesterday I felt as though my Manuka experiment had failed. Perhaps it was my own bloody fault, I wailed to myself, because of the UMF mistake I’d unwittingly made. Or perhaps Manuka just cannot overcome the problems associated with a compromised immune system…

In spite of what happened, I still believe in the healing properties of Manuka. I’m now back on the UMF 20 and will never again buy anything less potent. But, realistically, I need to be cough-less by the time my parents and I get on that flight for the U.S. And that is the main reason why I chose the fastest route…

I should be fine within a few days. Meanwhile, I have lots to keep me busy. For example, I’m editing the first chapter of a book written by a former Italian employer of mine (=a professor at the University of Florence), going to work, doing the usual amount of household-related stuff (cooking, washing, cleaning, shopping, killing mosquitoes, picking figs&raspberries&tomatoes, knitting blablabla…just kidding on the knitting, Paula, hehe!), planning game and dinner nights with the girls (yay!), playing with/feeding the kitties (almost a fulltime job), watching (again!) the first-rate first season of the BBC’s “Downton Abbey” with my parents, keeping up with blog messages/Italian & world news/Facebook (or trying to do so…!) and doing research…and…sheeeeesh!

I think I need a nap now… 🙂

ITCs kill myeloma cells in vitro and in vivo!

We already know that watercress, broccoli and other members of the cruciferous family are good for us in many ways (I have written about isothiocyanates or ITCs, specifically PEITC, in other posts). And this isn’t the first time I’ve read that isothiocyanates kill myeloma cells. That bit of news came out during the 2008 ASH conference (see http://goo.gl/UWwf3)…

But this is the first time I’ve read the actual study, which was published last month in “Haematologica” and is co-authored by an impressive panel of myeloma specialists (including many of the 2008 ASH ones, such as Kenneth Anderson and Paul Richardson).

As luck would have it, the full text is available online: http://goo.gl/29z7k  So I won’t go overboard with details…

The main thing, as I mentioned above, is that isothiocyanates kill myeloma cells by inhibiting a bunch of important processes involved in myeloma cell survival…

The study authors also found that these compounds enhanced the in vitro anti-myeloma activity of several conventional and novel therapies used in multiple myeloma. Further on in the study, we find out that those therapies are thalidomide, bortezomib, doxorubicin, melphalan and lenalidomide. So this is good news for anyone taking those drugs right now…I say, go ahead and have a big bowl of watercress (crescione, in Italian)! Incidentally, I wrote a post about watercress about a year ago: http://margaret.healthblogs.org/2010/09/19/what-a-small-bowl-of-watercress-can-do%E2%80%A6/ Watercress contains a lot of PEITC, which is able to turn off a protein called HIF that is important in myeloma, too…For those who wish to do more reading, here is a PubMed abstract addressing the crucial role played by HIF in myeloma: http://goo.gl/gsJp2

Back to our “Haematologica” study now. According to the authors, isothiocyanates have potent anti-myeloma activities and may enhance the activity of other anti-multiple myeloma agents. No comment needed!

Now scroll down to the Discussion part and read this: In this study, we show that SFN and PEITC have significant dose-and time-dependent activity against various MM cell lines and primary MM cells. SIGNIFICANT ACTIVITY. Mmmh, I like the sound of that!

Another relevant issue is that these isothiocyanates, PEITC (especially) and SFN, are able to kill not only the weak little myeloma cell lines but also (!) the resistant lines, yes, those that are resistant to drugs. Hah!

Now, leaving aside all the jargon concerning ITCs, what does this study mean for us? Just that we should eat as much watercress and other cruciferous family members as possible. A bit of caution might be necessary for those on Dex, doxorubicin and melphalan, though: when a low dose of PEITC was combined with those three drugs, the authors found that there were moderate or slight antagonistic effects. So ask your doctors first…

Another important excerpt: Our observation that SFN and PEITC have in vivo anti-MM activity in a xenograft myeloma model indicate that pharmacologically achievable levels of ITCs can affect the biological behavior of MM cells, thus supporting the relevance of our in vitro observations. For compounds with chemopreventive potential in healthy individuals, it is important that administration in cancer patients will not have harmful effects, e.g. antagonistic affect on activity of established anti-cancer therapies that these patients may receive. For example, the flavonoid quercetin inhibits bortezomib-induced apoptosis. In contrast to quercetin, we have observed that chemopreventive ITCs potentiate the anti-MM effects of bortezomib, and other conventional and novel anti-MM agents.

The authors then state that it may one day be possible to LOWER the doses of chemo drugs if they are found to be as effective when used in combination with ITCs. This would decrease the rates and severity of side effects while maintaining potent anti-MM activity. Wow, this is truly EXCELLENT NEWS…as well as being a big step in the direction of integrative oncology…finallyfinallyfinally, I say!!!

Toward the end, we can read the following: Importantly, our study raises the intriguing possibility that dietary supplementation with ITCs during the treatment of MM patients could potentially improve therapeutic responses. YAY!!! Intriguing indeed!!!

My biggest question right now is: where can I buy some organic crescione?!!!

New Simon’s Cat video!!!

It’s called “Cat and Mouse,” and can be found here: http://goo.gl/fCK6i I particularly enjoyed this new video, since similar things happen to me and Stefano all the time! 🙂 

When I’m at the computer, especially during the winter months, Pinga, Piccolo and sometimes Priscilla like to lie between me and the keyboard. That makes it difficult for me to do any work, especially when my boy Piccolo spreads his rather big self in front of me. Another cute thing they do, especially Pinga, is to type mysterious-looking e-mails… 🙂 Aaaah, cats! Wonderful creatures!

In this photo, taken in June, my baby (she just turned two years old) Pinga is, as you can tell!, lying across my Mom’s new Mac laptop, with her fuzzy little paw resting on the mouse, to boot! This cat loves technology! 

Anyway, I hope you enjoy the video… 

A hacking experiment…

Oh no, it’s not what you think. This has to do with hacking in the sense of coughing…

But let me start off this post by stating the following: DO NOT TRY THIS AT HOME. In other words, don’t do what I’m still doing. Okay, that said, now I can safely tell you what’s been going on…

At the beginning of this week I developed a cough, a nasty one. Uh-oh. Whenever that happens, it goes right into my chest, and then I have bronchitis for at least a week.

Under normal circumstances, as I have done countless times in the past, I would begin taking an antibiotic at the first hint of any YELLOW PHLEGM (sorry, but there’s really no polite way to put it, unless Paula has some suggestions, hehe…so I might as well shout it out in shiny capital letters! ;)).

However, recently I read some very bad things about antibiotics. On Facebook, Hanna posted this important link, important for those of us who do take antibiotics from time to time: http://goo.gl/qmgCU

Aaaah…not nice. Not at all. True, whenever I take antibiotics, I always take something that replenishes my supply of good gut bacteria…But even that, according to the article, may not be enough. See the bit about micro-ecology. Yikesss!

So, in view of this bit of negative press on antibiotics, and since Manuka honey cured an infected finger of mine back in 2009 (see my December 20 2009 post for details of this particular episode…), I got to thinking: WELL, WHY NOT? Let’s see if this honey works as well internallyIf my cough gets even a smidgen worse, then I can always start on an antibiotic

And so, for the past three days, I have been taking four spoonfuls (spaced out during the day) of “very active” Manuka honey. By “very active” I mean that it has more than an UMF 10 in it. An UMF is an abbreviation (=Unique Manuka Factor, hehe, love it!) indicating the strength of the antibacterial properties found in some types of Manuka honey. So please make sure, if you buy any, that your Manuka honey contains at least UMF 10. The stuff I have is UMF 15 or, even better!, UMF 20.

Now, I should note that I still have a cough. And we’re into Day Three.

However, on Day One I was already beginning to feel really crummy; whereas, on Day Two, = yesterday, I felt well enough to drive myself over to a girlfriend’s house to play cards (my team won, incidentally…!). And today I feel even better. Yes, I still have a cough, but that’s it. 

Ah, I can sense that you’re all just dying to know what the color of my phlegm is today. 😉 Well, it’s no longer yellow. It’s clear.

Now, one of the following things could be happening:

  1. Possible Placebo Effect. I believe strongly in the powers of Manuka honey. With reason, too. So could it be that my mind alone, even the strongly suspicious and skeptical part of my mind, is getting the better of this blasted cough? Possible.
  2. The Cough Would Have Gotten Better Anyway. Yeah, that’s possible, too. But I should note that it’s never happened before. Because of my almost non-existent immune system, my coughs always end up in my chest where they fester and develop into some really crummy stuff…
  3. The Manuka Honey Works. Well, that’s the most plausible explanation, methinks.

However, since THE cough isn’t entirely gone yet, I’m still reserving judgment. But, as I said, I feel fine, so I’ve decided to hold off on the antibiotics and instead wait and see what happens…Unless my cough takes a turn for the worse, of course! If it does, you will be reading another post about it… 🙂

MORE READING. A study shows that this wondrous honey can reverse antibiotic resistance  (Science Daily article, April13 2011): http://goo.gl/iSMYG

A taboo subject…

Patients do not want to hear that they are dying and doctors do not want to tell them. Quoted from “USA Today,” February 7, 2011: http://goo.gl/WAaoz

It’s not easy to write about death. Not easy at all. And whenever I talk about my own death, I do so in a joking manner. I can’t help it. That’s the way I am.

But when your body contains a whole bunch of cancer cells, thinking or wondering SERIOUSLY about death from time to time is inevitable. And so today I’ve decided to tackle this taboo subject. In my own, far-from-perfect way…

(Note: I wrote today’s segue to yesterday’s post a number of months ago, when the “death” discussion came up in the Facebook support group after someone posted a link to the above-mentioned “USA Today” article.)

Okay, let’s have a look at another excerpt from the article:

Fewer than 40% of advanced cancer patients have what it [=the oncology society] calls a “realistic conversation” with their doctors about what to expect and their choices of care. The consequences: Patients increasingly are receiving aggressive chemotherapy in the last two weeks of life. They are spending more of their last months hospitalized. They’re not told that a lot of expensive, side effect-prone therapies buy at best a few more months. SHOCKING…

This quote reminded me of what Dr. James Berenson, a multiple myeloma specialist whom I highly respect, said in a recent ASCO interview that I posted about on June 10 (direct link to the interview: http://goo.gl/9QkPW): I believe that the goal of a myeloma patient is to live the longest life possible with the best quality of life. And that quality of life not only has to do with the disease but the impact of therapy. And the impact of therapy is not only on your quality of life, it’s also on your length of life. (My transcription.)

I’ll definitely take quality over quantity any day…

Well, as far as I am concerned, I’m not planning to die any time soon. My myeloma is still stable and in the smoldering/inactive stage…Besides, I only rarely climb ladders or go swimming. 😉 You see, according to one of those “most common causes of death” lists, I’m more likely to die from an accidental fall or by drowning or even by poisoning myself than of dying of myeloma. So it appears I might be safe…For the time being, anyway!

Seriously now, you never know what might happen, even relatively quickly, since myeloma is an insidious type of cancer, and that is why it’s best to be prepared, without going overboard, eh! But I do think of what my progressing to active myeloma and dying would do to my loved ones. And I wish mainly to spare them as much strain and stress as possible. Especially Stefano…

To underline the importance of being prepared, here is another example from the “USA Today” article: Lichter tells of a lung cancer patient who spent his last days on a ventilator, unable to say goodbye and incurring $25,000 in hospital bills, because his family called 911 when he became short of breath. Hospice care could have eased that symptom at home. Sheesh!!!

I don’t want to go out in excruciating pain, short of breath, alone, surrounded by lights and sirens and people pounding on my chest. (=Quoted from the USA Today article…) No, I definitely don’t, either…

This was a difficult post to write, and I feel I haven’t done justice to the topic…no, I didn’t even come close. And that is why I welcome any comments…