As promised Sunday, here's the first of several posts I made to my kidney cancer group on ACOR.
NED = No Evidence of Disease. We don't say "cured" because invisible microtumors can still exist. All we can say is "no evidence of disease."
Complete Responder: a patient whose disease has "completely responded" to treatment, i.e. disappeared, i.e. NED.
VHL = Von Hippel Lindau syndrome - a particular form of kidney cancer (not mine).
Mets = metastases (distant tumors, as opposed to the primary tumor where the cancer started).
From: The Kidney Cancer Online Support Group [mailto:KIDNEY-ONC@LISTSERV.ACOR.ORG] On Behalf Of Dave deBronkart
Sent: Sunday, December 28, 2008 7:23 PM
Subject: [KIDNEY-ONC] Anticancer Foods (was: New Member - Stage IV)
I'm going to write some things here about foods. I'm not representing them as sure cures or treatments or anything of the sort. But, I've been doing some research and I've checked with some people I trust and I think this is worth sharing.
Here's the thing: I'm an IL-2 responder whose mets have shrunk another 75% since my treatment ended 7/23/07, but my oncology team is out of advice for me.
They say my odds of relapse are now down to 50%, but they have no advice on how to improve my odds. But like most people here, I'm not one to sit back and just hope!
My wife bought us a book Anticancer: A new way of life by an MD/PhD who had a brain tumor, got rid of it, and had it recur, all before he was 40. Third time around he decided to look for additional advice, beyond what his doctors had said ("Eat what you like. Just don't lose weight.")
(I first wrote about the book in November: Chocolate Therapy, and I just found a good layman's article about it in a British paper here.)
He found there's a lot of research worth paying attention to regarding how tumors grow and what foods help or hinder them grow.
1. One way cancer works is to hijack our normal inflammatory response. For one thing, an everyday injury triggers tissue repair, which includes growth of new blood vessels (angiogenesis). We can fight tumors by any intervention that discourages inflammation or angiogenesis. Some foods do that.
2. Angiogenesis plays a key role when microtumors get promoted into nastier things. (The book's cover says "All of us have cancer
cells in our bodies. But not all of us will develop cancer.") It's good to interfere in that process.
Note: that text explained to me why even complete responders (NED) often have a "relapse" (i.e. they go from NED to having visible tumors again). And boy is it motivating to realize I can affect THAT!
Even better: in the three-step cancer growth process (initiation / promotion / progression), PROMOTION IS REVERSIBLE. I realized: holy crap, I don't have to sit here and hope some tiny death pellet hasn't already started growing?? If I catch it early, I can REVERSE it??? That's game-changing!
3. At a Christmas party I bumped into Dr. Othon Iliopoulos of Mass. General, head of their VHL program. (Heck of a party, huh?? It wasn't a medical event.) He told me fighting angiogenesis is also good against mets, whose size can be "vessel-limited."
So: choose foods that resist angiogenesis, and avoid foods (particularly fats) that cause inflammation.
A few specifics:
1. Green tea has powerful antiangiogenesis ingredients. Have 2-3 cups a day; steep for 10 minutes to release the goodies and drink
within an hour before they expire.
2. Green tea also binds receptors that affect tissue penetration into neighboring cells.
3. Raspberries & strawberries have lots of ellagic acid, which blocks angiogenesis by acting against VEGF and PDGF.
4. Turmeric (an ingredient in curry) is a potent anti-inflammatory. Buy turmeric, not just curry (which is only 20% turmeric). Also turmeric must be taken with black pepper, and ideally dissolved in oil.
5. As many have said here, cruciform vegetables are good (Brussels sprouts, broccoli, cabbage and cauliflower).
6. Blueberries and dark chocolate (not milk chocolate!) contain proanthocyanidins, which promote apoptosis (cell death). Yes, ladies & gents, you can fight mets by eating dark chocolate! (At least 70% cacao.) I now eat it at work, declaring that I'm taking my medicine. (You should see the looks I get; people are sorta getting used to my being playful about cancer.)
That brings me to a non-food item, psycho neuro immunology (a long word that I insist on breaking up):
7. It's finally been proven that humor and other mood-enhancers beneficially affect the immune system. (Psychoneuroimmunology: psych affects neurosystem which affects immune system.)
So laugh! And do meditative/prayer/yoga stuff!
More in a later post. Suffice it to say, I love being able to look at my kitchen with a sense that it's a weapon to fend off invisible future cancer events!
Note, about the above: In an e-patient community, people (ordinary lay patients) become very educated about their disease, help reality-check each other, and share what they learn.
This is very, very different from the isolation and lack of empowering information that plagued us just a few years ago. (See the opening anecdote of "E-Patients: How they can help us heal health care," Dr. Blakely & Mr. Murphy, which happend the same year the Web came into being.) The Internet has brought us together with each other, and has brought us together with information we might never have seen. It's let us share what we learned, reaching others who might have had even less chance of seeing it.
And here's the key thing: sometimes it goes beyond what patients can get from their own oncologists – even some of the best specialists in the world. "Because," as the banner on the e-patient blog says, "health professionals can't do it alone."
This is "Health 2.0" on the hoof. Here's the definition that some of us "crowdsourced" last June:
Health 2.0 is participatory healthcare. Enabled by information, software, and community that we collect or create, we the patients can be effective partners in our own healthcare, and we the people can participate in reshaping the health system itself.And that is how it works these days. The Internet is altering the balance of power by bringing us together with information and with each other.