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: https://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

10 Comments

  1. I have two of Dr David’s books – the anti cancer diet and Healing without Freud or Prozac – I got the first for obvious reasons and the second before by SCT as I was still going to get one lot of steriods (they knocked the dex off) just in case I went bonkers again! ;D

  2. Margaret, this was the first book I was gifted from a loving relative when I was first diagnosed. It was the best thing that happened to me, because it gave me hope and a message that it may be possible to beat the odds.

    Everyone should read this. The story is so fascinating from many perspectives, from how he first accidentally discovered the brain tumor, to how he fought it and then it came back. His whole philosophy about the body being your terrain … well, I encourage all of you to read it.

    I will probably read it again after getting through Kris Carr’s newest book. By the way hers was the second book I got – Crazy Sexy cancer. From that book I learned even more about eating well, exercise, and once more got more hope.

    Thank you for your great post today. I plan to go through your links and listen and read tomorrow morning when I am rested and receptive.

    Good night.

  3. Great post, especially the beginning of your story. I have followed your blog since October ’09 and started taking 4 grams of curcumin daily in January ’10. My MGUS IgA level is coming down and is just above normal now. I was inspired by TAB’s IgA story and inusitol. Thank you for your example of how to be pro-active and have hope!

  4. There is nothing you can do…

    I remember it well. This was what the doctor told me when I asked what I could do to slow progress.
    That was three years ago, and still stable 🙂

    I think that stress may play a role. When my father died I immediately noticed a decline.

    So far I have good experiences with turmeric, sesamin, D3 and inositol/IP6.

    Hans

  5. Margaret, quello che tu racconti succede a tutti
    coloro che hanno un tumore ematologico
    cosiddetto “indolente”, sia un mieloma, sia
    un linfoma, sia una leucemia linfatica cronica….
    e’ successo anche a mio marito. Alcuni medici
    consigliavano di intervenire subito con chemio e
    radiazioni, altri dicevano di aspettare …
    aspettare che cosa ? aspettare la progressione
    ineluttabile della malattia, che da indolente
    diventi aggressiva? aspettare senza poter rallentare
    o controllare questo processo?Oltretutto , non c’e’
    evidenza che i pazienti trattati subito con chemio
    abbiano prospettive migliori…ma questo offre
    la medicina allopatica. A proposito, vorrei
    chiederti, se si assume curcumina, e’ possibile
    assumere occasionalmente anche qualche farmaco
    allopatico, tipo aspirina, aulin, antiinfiammatori,
    per qualche emergenza? ci sono interazioni?

  6. Ma perché la progressione deve essere ineluttabile, Carla? Non sono d’accordo. Anzi, secondo me è più pericoloso intervenire su un mieloma indolente e non aggressivo…Si rischia di ottenere l’opposto di quello che si vuole–cioè un mieloma aggressivo ed invasivo. No, in assenza di sintomi CRAB, è assurdo intervenire, ne sono certissima.
    E bisogna stare attenti, secondo me, anche ai sintomi CRAB. Per esempio, si può intervenire sulla A (forse non sempre, ma se quello è l’unico valore sballato, si può fare un tentativo)…
    Come dici tu, i pazienti trattati subito con la chemio non stanno meglio…anzi!, al contrario, spesso stanno peggio, secondo tutti gli studi che ho letto. Io la vedo così: è come se le cellule di mieloma, vedendosi attaccate da tutte queste sostanze tossiche, reagiscano in modo molto aggressivo e feroce. Come degli animali braccati.
    Per quanto riguarda l’aspirina, guarda caso, in questi giorni sto leggendo delle cose interessanti (e ci sto scrivendo anche un post), ma non ho ancora finito.
    Non so a quale tipo di “emergenze” tu ti riferisca, ma se si tratta di mal di testa, io uso il Tylenol, che è paracetamolo, e mi trovo molto bene (lo uso molto di rado). Non prendo la curcu insieme al Tylenol, comunque. Beh, spero di averti risposto…almeno in parte. Ciao! 🙂

  7. intendo dire che i medici convenzionali fanno di tutto
    per trasmettere negativita’…alcuni proposero
    la chemio R-CHOP e radiazioni a mio marito (che era
    asintomatico, affetto da linfoma indolente, e che
    quasi svenne alla proposta di questo “piano terapeutico”)
    altri proposero un regime di semplice “osservazione”
    detto anche “watch and wait”.Siccome nel frattempo
    avevamo letto “che i linfomi indolenti sono incurabili
    perche’ le cellule si dividono lentamente e solo le
    cellule che si dividono velocemente sono sensibili
    alla chemio”, l’idea di “osservare” senza fare altro
    qualcosa che sostanzialmente e’ incurabile e puo’
    accumulare mutazioni genetiche francamente ci rese
    ansiosi….
    Grazie per le info!

  8. Margaret,
    Thanks so much for this post. I watched Dr. David’s lecture. It was one of the best I have ever seen. I, like you, went through a similar experience where my doctors were recommending chemo and a transplant. For some reason like you I decided to go the alternate route. I’m glad I did, for that has been 13 years ago and my markers are still holding. Thanks for all your great research and posting.
    TAB

  9. i loved your article Margaret. I found this on Huffington a few weeks ago – about the importance of Hope.
    http://www.huffingtonpost.com/joseph-nowinski-phd/hop

    I wonder if anyone has read the wonderful book Love, medicine and miracles by Bernie Seigel. he also talks about this.

    I feel we have to educate our Drs as to how to ‘speak’ to us. Mine is very negative and i have to tell him to be more positive, not to show me graphs going in the wrong direction!, flap about one off results being a little too high – it might be human error. He is getting better but I continually have to manage him or would not be able to face each appointment!!

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