Hope…

March 13 2011 post. My Mom told me about a program she had seen last week on the compelling brain cancer story of David Serban 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. Serban 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, Serban 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

One thought on “Hope…

  1. Mary

    Hi Margaret,

    I,m back with another question. In spite of 16 curcumin pills a day, my M-spike went way up in May. My local doctor was pretty evasive about it. He told me he was sending the results to Dr. Landgren who heads an NIH study I am in-tracking people with MGUS to see who progresses to MM or SMM. Since Dr. Landgren only does research, he never got back to me. The last time I contacted my local Doctor, he expressed surprise that Dr. Landgren hadn’t responded, but didn’t want to address my BIG jump himself. So I am looking for a new hemotologist/oncologist who is experienced with MUS, SMM, and MM. NIH won’t give me any guidance because they “only do research”. I see that you once contacted 3 internationally renowned MM specialists. Can you give me any tips on how to find an experienced MGUS/MM specialist, if there are any near me in New Jersey?

    Thanks so much for your blog. It’s my go-to for hopeful news and information on a frightening condition that I have to learn to live with.

    My best,

    Mary

    Reply

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