Why I love elephants…

After returning home from work today, I settled down to finish reading a rather startling study that I had begun yesterday…but one of my girlfriends phoned to see if I wanted to play cards with the usual group later on. Gee, twist my arm…! Besides, Dr. David maintains that friends are more important than spouses ;-), so how could I say no?

Since I have a bit of time before leaving, though, I would like to post a link that a blog reader/friend sent to me…This video kept me on the edge of my seat for almost two minutes: http://goo.gl/6iFhY Amazing, eh? Okay, off I go…

Hope…

My Mom told me about a program she had seen last week on the compelling brain cancer story of David Servan Schreiber, a French physician and neuroscientist. Among other things, she described, in detail, a very interesting (…really horrible, too!!!) electric shock experiment carried out on rats injected with malignant tumors (=a story recounted by Dr. Servan Schreiber). While she was talking, so many bells went off in my head that I decided to do a bit more research on this doctor…

Well, my search confirmed a few things that I already strongly believe in…and taught me quite a few things I didn’t know…

Before giving you the links, though, I want to describe a relevant episode from my own personal experience…and I have no doubt that many of you, if not all!, have a similar story to tell…no doubt at all…

Let’s see. Where to begin? Well, more or less in the fall of 2005, when I realized that my MGUS was progressing, I became quite concerned. Stefano and I went to see my Italian haematologist who, looking over my most recent (at the time) tests, advised me to begin chemotherapy immediately—three cycles of Velcade, then an autologous stem cell transplant in the summer of 2006. Mostly giving in to a gut feeling, I refused (by the way, this happened months before I found out about curcumin, and I would like to note that at that time I was in a conventional state of mind…I wasn’t even looking at anything remotely “alternative”). I immediately contacted three internationally-renowned myeloma specialists, two in the U.S. (both at the Mayo Clinic) and one here in Italy.

All three confirmed that, yes, I was definitely progressing towards active myeloma. But the important thing, as far as this post is concerned, is that I asked each expert what I could do at least to SLOW DOWN this progression. There had to be SOMETHING…

But they all answered: “No. Nothing. There is nothing you can do.”

Nothing??? I still remember my feelings of shock and frustration…

The only one who gave me a very slightly different take was one of the U.S. specialists, who suggested that I should simply continue with my daily life, have fun, do some exercise and follow a healthy diet. Nothing more. As for what that healthy diet entailed, or what kind of exercises I should do, well, I simply have no idea. I was in such a state of shock at the time that I didn’t press him any further…

Anyway, after those consultations, I began thinking that it was really horrible for doctors to say something like that to a patient…that it was simply unacceptable and, in fact, cruel of them to have taken away my HOPE…and that this had undoubtedly happened to who knows how many patients before me…and would happen to countless others after me…

Naturally, I don’t mean to imply that these specialists should have given me false hopes. I don’t want to be told, “everything is going to be fine,” if everything is NOT going to be fine. That would be extremely silly…But taking HOPE away from a patient is another matter…

The point of this entire section is that what I have discovered in the past five years (plus) has made me realize that, okay, while I may progress to active myeloma some day, those specialists were simply wrong (this is JUST MY OPINION, of course!)…

I have come to believe, very strongly, that we can indeed do something, indeed perhaps many things, to improve our situation, even if “only” on a psychological level. Had I known back in 1999 what I know now, if I had taken curcumin back then, I believe that my MM markers would be much lower today; I might even have remained in the MGUS category. Of course there is no way of proving that…that is, unless I can fix the technical problems I am having with my time machine… 😉

Okay, let’s put aside what happened in 2005…and my not-so-interesting ramblings…and instead go on to the central part of my post, which is Dr. David (his surname, Servan Schreiber, is soooo long that I will simply call him Dr. David from now on).

This physician definitely shares my above-stated opinion that there are things we can do to improve our situation and also that it is terrible to take HOPE away from cancer patients. And he is a medical doctor, not just someone with a non-scientific Ph.D… (er, that would be yours truly…). So let’s pay careful attention to what he says…

Let’s start with the lecture that he gave at the MD Anderson Cancer Center in July 2009 (the full transcript can be found here: http://goo.gl/cvCST; incidentally, you will find the shocking rat story about 2/3 of the way down the page…). Even though I haven’t read the whole shebang, I really liked what he had to say about “false hopelessness”:

As a physician, I am very concerned about the idea of giving people false hopes, because I know this betrayed the only thing that is truly fundamental which is the authenticity of my relationship to a patient. And I don’t wanna have false hopes for myself. I need authenticity in the relationship to myself as well. However, when we do not tell our patients or we did not tell ourselves about all of the scientific information that shows that there are powerful ways in which we can regain control of our faith in our fight against cancer, then what we are doing is inducing false hopelessness. And all of what I am trying to do today, for this book really has talked about all of my actions, is to fight against false hopelessness.

There are powerful ways to fight against cancer…oh yes, indeed…I believe that, too…strongly.

And now we get to the most important link of this post. It will take you to a lecture that Dr. David gave last year at UCSF: http://goo.gl/Bz5pT It lasts an hour, which may seem like a long time, but let me tell you, this guy is the complete opposite of boring…his talk is very interesting and even funny here and there…So make yourselves a cup of tea or coffee and settle down in a comfy chair…

Now, if you don’t want or have time to watch the whole thing, then I suggest that you at least watch the last 30 minutes. After 34 minutes, for example, he explains why oncologists scoff at the very idea of diet intervention…why they think it won’t help one bit (he strongly disagrees, by the way…). Interesting…

And, after 48 minutes, he describes the shocking rat story, which, as I mentioned, you can also find in the MD Anderson transcript. This experiment is, I repeat, the reason why I got interested in writing this post in the first place. I mean, why did the third group of rats fare better than the first two, even though theoretically they should have been much worse off? The answer is that they had HOPE. They had some sort of control. And this goes to prove that if you take away hope (e.g., by telling your cancer patient, “oh no, there is nothing you can do…” OR “sorry, but there is nothing more we can do for you”)…well…you get the idea…

Here is the link to the 68% reduction in breast cancer mortality study that Dr. David mentions in the second half of the video…the study that didn’t make it into the New York Times, even though, as Dr. David points out, there is not one single conventional treatment that can compare with that result: http://goo.gl/Gjvqu Eh.

At one point, as I recall, he says that stress doesn’t cause cancer, and I don’t believe that, either, otherwise practically the entire world population would have cancer. But let’s not forget the 2008 study that linked the stress hormone norepinephrine to myeloma cell proliferation, see: http://margaret.healthblogs.org/life-with-myeloma/what-is-multiple-myeloma/multiple-myeloma-and-stress/ So this is an area that needs a bit more exploring, in my opinion.

Let me add a brief anecdote to what I just stated about stress and myeloma. I have a friend whose myeloma had been asymptomatic for a couple of decades…Then, five or six years ago, during a period of incredibly high stress at work–pressing deadlines and so on–her myeloma markers suddenly went sky high. She panicked and decided to quit working so hard. And she began going to the gym. Within a few months, her markers had returned to pre-stress levels. So there is something to be said about getting rid of stress, enjoying life and laughing as much as possible…

But, most importantly, don’t let anyone take away your hope…

Ever.

P.S. Here is a February 2010 “Huffington Post” article listing Dr. David’s suggestions for an anticancer lifestyle: http://goo.gl/6Cqww

Recanati…

On Sunday, after visiting Raphael’s family home and walking all the way around the Ducal Palace, we left Urbino and drove on to Recanati, where the famous 19th century Italian poet Giacomo Leopardi (http://goo.gl/ElZRN) was born.

Now, as you may already know, I was born in the U.S. and am a U.S. citizen…But when I was six years old, my family moved to Florence, Italy, where I went through the Italian public school system. Anyway, when I was in the scuole medie, the equivalent, I guess, of U.S. middle school, I had to memorize heaps of poems for tests and so on…Point is, Leopardi was definitely one of my favorite poets…though, to be 100% honest!, my classmates and I tended to favor authors of very SHORT poems… 🙂

Fast forward to last weekend. Stefano and I really enjoyed our overnight stay in Recanati, a very pretty hilltop town with cobblestone streets and fine views over the marchigiano countryside. Among the things we did that day was take a guided tour of the Leopardi family library, which doesn’t sound that exciting but was really worth it in the end. The family library holds more than 20,000 volumes, family portraits and miscellaneous objects…AND some of Leopardi’s own drawings and writings…his early ones, in particular.

Our guide told us some juicy tales about the family…for example, things I didn’t know about Leopardi’s very strict father, who, interestingly, demanded the same education for his eldest sons AND his daughter Paolina, which, given the period, was extremely “modern” of him…

Leopardi’s father also opened his library to the citizens of Recanati…a generous but pointless gesture, since, the guide explained, nobody in town could read at that time. Eh. Oh, another interesting titbit for Leopardi fans: his descendants (not his direct descendants, since he died childless…at the age of 39…) still live in the house (photo 2), and the only part open to the public is the library…

As you walk around the town of Recanati, make sure to look up and read the writings you will see engraved on slabs (photo 4) located mostly around the poet’s family home. They are excerpts from Leopardi’s poems…

The verses you can read in this photo are from Leopardi’s 1819 melancholy poem titled “Alla luna,” which means “To the moon.” Here is a translation of that excerpt:

Oh gracious moon, now as the year turns,
I remember how, heavy with sorrow,
I climbed this hill to gaze on you,
And then as now you hung above those trees
Illuminating all.

 

Urbino under the snow…

 

We returned to Florence late last night…went to work today…I returned home this afternoon totally exhausted…heaps of e-mails to go through, as usual…oh dear, just got a call from Stefano who told me he and his brother had to rush their father to the ER (apparently, he is okay, but I am awaiting more news)…

 So right now, to take my mind off things, I am looking through the photos I took this weekend in the region of Le Marche…the city of Urbino, specifically…including this lovely panoramic view (photo 1) taken from the Albornoz Fortress, which is the highest point in the city (485 meters above sea level).

Getting up to the fortress was no joke…Some of the incredibly steep (narrow, too!) side streets had not been cleared of snow, as you can tell from the second photo, so the going was quite slippery.

Luckily, there were handrails that we could hold onto during our climb (in fact, if you look closely on the lower left-hand side of photo 2, you will be able to see one).

The view from above (photo 1) was well worth the arduous climb, though…wow…

The manager of the hotel where we spent Saturday night informed us that Urbino had essentially shut down after the snow storm…Even the university had closed, even though this is a period of graduations…a good period for tourism…Usually. But not last weekend…

Our hotel had been forced to close for a few days, too, buried under the snow, and had reopened the day before we arrived…Even so, we (and one other couple) were the only guests there, which, I repeat, is very unusual for this time of year.

Between sighs, the manager explained that last week he had received only cancellations from clients who had been scared off by the dire weather forecasts. Of course, Stefano and I knew that Urbino had been hit by snow, but that had not deterred us from our original plans. And, in fact, our Skomer Island gear kept us nice and dry and warm (oof, icy icy ICY winds in Urbino…!)…

 Anyway, as a sort of reward for our steadfastness, I guess, we were assigned the hotel’s best room…

…a room with a view (photo 4; taken very early on Sunday morning)…

Still laughing today…

Today has been absolutely crazy…teaching a new course (technical English…about which I know absolutely NOTHING…Eh, I must say, stuff like this makes life, er…interesting…hmmm), getting ready to leave for Le Marche (tomorrow AM!)…But I did find the time to check Facebook, where I found three really FUNNY videos that I just have to share…

Cat versus printer (translation): http://goo.gl/VWvom

Chattering: http://goo.gl/aNnpx

Last, but not least…Single white feline (BBC comedy): http://goo.gl/DAqVr

Take care, everyone! Ciaoooo!

Short holiday in Le Marche; a new personalized therapy makes cancer cells kill themselves, AND a really funny video…

In addition to having quite a bit of work to do these days, I am also trying to plan our holiday weekend. Puff puff, rush, rush. On Saturday morning, you see, Stefano and I are leaving for the Italian region of Le Marche…Specifically, we are heading for the lovely walled city of Urbino, which is a World Heritage Site: http://en.wikipedia.org/wiki/Urbino My parents took me to Urbino when I was a kid, but I don’t remember a thing, so this will be like visiting it for the first time. Does the name Raphael ring a bell? Er, the famous Renaissance painter, not the archangel. Well, he was from Urbino…And in fact our hotel is about a stone’s throw from the house where he was born in 1483…verrrrry exciting…

On Sunday we are leaving Urbino and driving towards the coast, near where Stefano has a work-related meeting on Monday. While waiting for him (to finish his meeting), I will wander on the beach, read my book and take photos…Ahhh, can’t wait!

Obviously, a close friend will be moving into our house for the entire weekend to look after our cats. She adores our kitties and plays with them until they flop down, exhausted…and they adore her, so this is a purrfect arrangement…

In spite of all the rushing and puffing, this morning I found the time to read a couple of Science Daily articles, mainly this one: http://goo.gl/V7p1t What I found interesting about this new type of therapy is that the immune system doesn’t have to move a finger, which means that even patients with compromised immune systems would benefit from it, at least theoretically: The fact that this therapy does not require participation of the patient’s immune system to kill cancer cells is a big advantage over other newly developed technologies, such as the cancer vaccine. Those technologies depend on the patient’s immune system to destroy cancer. Unfortunately, they are not effective in the presence of a compromised immune system, which is true for many cancer patients. In contrast, Dr. Rosner’s therapy will be able to treat even the most severely immuno-compromised patients with the same degree of success as in treating patients with a fully functional immune system.

Now, the article mentions that this therapy could treat a large variety of tumors, such as prostate, lung and breast cancers.  There is no mention of blood cancers…but you never know. Oh, I thought the nonchalant reference to the fact that this therapy might cause a lightening of skin hue was rather bizarre, to say the least…What in the world does that mean? Anyway, it will be interesting to see what comes of this…

And now for the funny video…yes, yes, yes, it’s a commercial, but it’s ohsoincrediblyfunnyandcute…so I just had to go ahead and publish it: http://goo.gl/DL7qC Enjoy! 🙂

Back to work! Then I am dashing off to spend the evening with my hilarious girlfriends. Ciaooooo! 🙂

High vitamin-D bread…now there’s a thought!

A recently-published study on a high vitamin-D bread tells us that as many as 70% of the U.S. population may have insufficient vitamin D status. Eeeek!!! A blogging friend (thanks!) sent me the full study…Now, you can find the gist in a Science Daily article (http://goo.gl/dBufl), but if you are feeling particularly audacious, go have a look at the study abstract: http://goo.gl/PqyzS

This could actually be a bit of very important news, especially for those of us myeloma folks who don’t believe in supplementation, particularly in vitamin D (not my case, of course! Even though, come to think of it, I don’t take a huge amount of stuff…mainly, curcumin, fish oil, quercetin and vitamin D…oh, and a vitamin B complex right now…but normally I don’t take any vitamins etc. I try instead to have a healthy diet with lots of herbs and spices…).

Another point. If you are new to my blog and need some convincing on how important vitamin D is for MM, MGUS and SMM folks, please have a look at the 2009 Mayo Clinic study, which proved that MM patients with normal levels of vitamin D had better outcomes than those with low levels of this vitamin. You can find the link here: http://margaret.healthblogs.org/life-with-myeloma/what-is-multiple-myeloma/myeloma-and-vitamin-d/ After reading that study, I began pushing for the vitamin D test to be part of our routine tests, especially especially ESPECIALLY at diagnosis. I mean, you don’t want to be in the “worse outcome” group, do you? No, didn’t think so. I don’t, either!

Okay, I have to go now…I am busy busy BUSY these days, but I will check the full bread study as soon as possible to see if it contains anything that I should report about, here…Hmmm, how about a vitamin D and curcumin bread? Now there’s a super thought! 😉

P.S. I wanted to mention that sometimes my replies to blog reader queries get rejected by the oh-so-bothersome “Mailer Daemon.” So it’s not always a question of my forgetting to answer your messages or, worse!, ignoring your messages. I am mentioning this right now because it just so happened that the Mailer Daemon rejected the reply I sent to Wes a few minutes ago…Wes, I really hope you read this note and don’t feel neglected or ignored by me. Scroll down my Pages on the right-hand side of the blog—you should find all your answers there. Or send me a different e-mail address, and I will try to forward my rejected reply to you. Thanks!

Increased in vivo efficacy of lenalidomide by addition of piroctone olamine…

First, an update on my computer situation. Stefano fixed it yesterday evening, and I have to say that the new superfast groovyzoomything that he installed in its belly seems to know what I want to do even before I begin typing…in fact, I can barely keep up with my computer now…Amazing.

Ah, before I forget: I didn’t check my e-mail during the frustrating, slow-as-a-snail laptop period, so I found 120 or so messages lying (unread) in my e-box yesterday evening. Yikes! It will take me a while to go through all of them, so I just wanted to say that if you have written to me with a question or two but haven’t heard back yet, please send me a reminder…Thanks!

Now, before getting to the point of this post, I would like to remind you of what I wrote a couple of years ago about an antifungal goo (= a nail fungus treatment, actually) called ciclopirox olamine, or CPX, which was shown to have devastating effects on leukemia, myeloma and solid tumor cells. Here is the link to my CPX page: http://margaret.healthblogs.org/other-alternative-treatments/ciclopirox-olamine-nail-fungus-treatment/ Please note that CPX targets leukemic STEM cells, too…Ah yes!!! Very exciting…

A quick note: a blog reader wrote that her husband was in the CPX clinical trial at Vancouver General Hospital (click on the link above to read her comments). Well, this afternoon I went to the Clinical Trials website where I found that this particular trial is going to end in October 2011…so it may be a bit too early now to have any results. But, Lyn, if you have an update of any sort, would you please get in touch with me? That would be lovely, thanks! 🙂

Okay, fast forward to last Sunday (morning), which is when I stumbled across an interesting abstract discussing another antifungal substance called piroctone olamine, or PO, which KILLS myeloma cells (=major apoptotic activity) as well as lymphoma ones. See: http://goo.gl/Dgbuy This stuff was tested also in vivo (= mice), as you can read in the abstract…

Another interesting titbit: when lenalidomide (Revlimid), a derivative of thalidomide, was added to PO, the effects on the myeloma cell lines were even stronger…

The abstract concludes that These results reveal a significant selective induction of apoptosis by PO and suggest a significant in vivo effect against myeloma.

So far, so good. Now, after doing a bit of research, I discovered that, yes, PO is indeed used to treat fungal infections…but it seems mainly to be used in the treatment of moderate to severe dandruff. No, really, I am NOT kidding! See: http://goo.gl/Y3xyV

So here we have TWO substances that treat nail fungus and severe dandruff…and they BOTH annihilate myeloma cells, too? If I hadn’t read it with my own eyes, I wouldn’t have believed it, either…

Well, I am not sure what to do with all this antifungal myeloma information, but I find it interesting that curcumin also has strong antifungal activity…Personal anecdote (which I have mentioned before…): back in 2006, some time after I began taking curcumin, my chronic…bothersome and painful…yeast infections disappeared once and for all…and, incidentally, have not returned (see: http://goo.gl/MQOXW) …AND my myeloma has also been more or less stable since then…

Well. Makes you wonder…doesn’t it? Any ideas or thoughts or suggestions? Should we be running out to buy some of this wondrous dandruff shampoo (without any parabens, of course) or…?

I want a metronome!

I am still on the slower-than-a-snail laptop, since Stefano, my computer guy, has been too exhausted the past couple of nights to put my super fast fabulous computer back together. He said he would do it this evening, though. Phew!

So I don’t have any research-based posts, but I do have this, thanks to Hanna: http://goo.gl/VS2rp  Hehe. Enjoy!