Hello, everyone. I am new to this forum. I read posts here as a guest for a couple weeks, and it was a very big help to me. Thank you all so much. Now it's time for me to give back.
I'm in watch-and-wait mode until I get a follow-up MRI and audiogram at six months to determine if my 1.9-cm AN is still growing. My lifelong career depends on hearing preservation, so the doctors I've consulted have all been sensitive to this and see no problem with me waiting until followup tests (MRI and audiogram) confirm I must seek treatment. My hearing is unusually well-preserved for a tumor this size (one neurosurgeon called my hearing "extraordinary" for this size tumor). While I wait -- in fact, since beginning the day after I was first diagnosed, which was 2 months ago -- I have been using my extensive knowledge of herbs, supplements and nutrition to try to shrink my tumor.
Three things before I share my research: 1. I know that a lot of you don't believe natural therapies do anything useful, and you will regard my post as being harmful quackery. While I don't wish to offend anyone, this post is not meant to convert you or anyone else, so please just choose to ignore this post if you'll likely take it the wrong way; 2. I am not a healthcare professional, and the following information is not meant to diagnose, treat, or cure any condition; 3. Although I've had great success with treating a variety of my own health conditions in the past, a genetic condition such as an AN (wherein tumor supressor genes are mutated) is totally new territory for me. Simply put, I don't know if I can succeed in shrinking my tumor. But recognizing that no Western-medicine approach is without risk and I'm in watchful-waiting mode, it doesn't hurt for me to try.
Much of this research is available online, either on the website for Memorial Sloan Kettering Cancer Center (they have a great section devoted to scientific studies on herbs) or at pubmed's website. Donald Yance, a brilliant naturopath practicing in the Ashland, Oregon area, also provided me some of his research on anti-angiogenesis herbs (which seems to be largely derived from pubmed's website); I cite some of his research below, and the rest of the research is my own. The research is deep, so I'll be initially relatively brief here. Here is how I personally am trying to arrest the growth of and shrink my tumor:
1. Herbs and supplements that are anti-angiogenesis, anti-inflammatory, and anti-coagulant.
Angiogenesis is the sprouting of new blood vessels from an existing blood vessel. It is necessary for a tumor to grow. Without the new blood supply (for nutrition) and waste pathway, a tumor simply can't grow beyond 1 or 2 mm in size. Some herbs and supplements that have been either clinically proven or proven in in vitro or in vivo lab studies to suppress angiogenesis are: turmeric, ginkgo biloba, Panax ginseng, ginger, milk thistle, japanese knotweed (containing resveratrol), grape seed extract, green tea extract, and quercetin (found in burdock root, grapes and red and yellow onions). These herbs work by different mechanisms, for example:
Turmeric, grape seed extract, milk thistle (the extract contains the polyphenolic flavenoid silymarin), ginkgo biloba, Japanese knotweed (resveratrol), and green tea extract all have been shown to inhibit VEGF (Vascular Endothelial Growth Factor), which is essential for angiogenesis to occur. VEGF must proliferate in the inside walls of blood vessels in order for them to branch out and form new vessels.
Turmeric also blocks APN, an enzyme necessary for tumor angiogenesis.
Some research indicates that angiogenesis favors inflammatory and hyper-coagulative states. Ginger, resveratrol (a supplement you can order online), turmeric, Panax ginseng, burdock root, quercetin, and japanese knotweed all inhibit NF-kB, an inflammatory transcription factor that plays a role in cell proliferation, apoptosis (tumor-cell death) and immune-system response. Ginger, fish oil, turmeric, bromelain (a digestive aid found in pineapple), grape seed extract, resveratrol, Panax ginseng, and burdock all inhibit COX-2, which causes inflammation and is thought to be a factor in tumor growth. Wobenzym, a supplement that is popular in Europe and available in health-food stores in the U.S., is used by many to boost the immune system and reduce inflammation; one of its ingredients is bromelain.
Also of note, a hyperglycemic blood load (in plain English: high blood sugar levels) is thought to be inflammatory; burdock root, dandelion root and garlic are all hypoglycemic and may be helpful in counteracting a hyperglycemic state. Best to avoid eating all those donuts and cookies, too!
Other approaches are also of interest. Research indicates that mutation of the p53 tumor suppressor gene may cause a tumor to grow by escaping detection by our immune system. Quercetin and burdock root (which contains quercetin) inhibit mutation of the p53 gene. Resveratrol induces the p53 gene to activate tumor-cell apoptosis (cell death). Proteins that suppress apoptosis, such as Bcl-2 and Bcl-XL, can increase angiogenesis when their "expression" is "up-regulated." Turmeric, grape seed extract and green tea extract all down-regulate the expression of these proteins. Green tea extract has also been shown to inhibit non-malignant profilative diseases.
Fibrin is a component of coagulation, which some researchers believe plays a role in tumor-cell growth. Gotu kola and bromelain break down fibrin by stimulating production of tissue plasminogen activator (tPA). Dandelion root is anti-coagulant and is also a blood cleanser, alterative (improves general health) and protects the liver.
According to Donald Yance, lowering serum copper levels stops angiogenesis and switches endothelial cells into the apoptosis pathway. Supplements and food that lower blood-serum copper levels include zinc, lipoic acid (AKA alpha lipoic acid), N-acetylcysteine, selenium and cilantro. You probably don't want to cut out copper completely from your diet, however; you may just want to keep it in check. That's because some copper is necessary to maintain the health of your nerves' myelin sheaths. And ANs destroy affected nerve(s) myelin sheathing.
2. Adaptogenic herbs are those that stimulate the immune system and cause a general improvement in health. Four adaptogen tinctures (liquid extracts) I've been taking daily to build my body's immune system are reishi mushroom, maitake mushroom, ashwagandha, and astragalus root. To this I add milk thistle extract for its anti-angiogenesis influence and because it also protects the liver (a good, precautionary measure to take if you're taking high, therapeutic doses of herbs and supplements). I also take Panax ginseng in a powdered herb formula I made up, which also includes turmeric, ginkgo biloba, gotu kola, ginger, licorice root and burdock root. Part of my thinking with the ginkgo biloba is that it might also help deliver all these herbs and supplements to the tumor because it is known to increase blood flow to capillaries in the cerebrum. While the cerebrum isn't where ANs grow, it's in the neighborhood. Anything I can do to increase blood flow to my brain might also decrease any existing hyper-coagulative state. So I do shoulder stands (a yoga posture) and hike outdoors (aerobic exercise) as much as possible -- one or the other exercise daily.
3. Hippocrates Health Institute (in Florida) cites success with shrinking non-malignant brain tumors by placing their clients on a raw-food diet, consisting mostly of sprouts (beans and seeds) and raw fruits and vegetables. I followed a strict raw-food diet many years ago for 3.5 years when I was much younger, and my health improved dramatically. Now much older, I feel I need to eat more protein than what a raw-food diet can provide. Plus, I feel that fish, eaten in moderation, is important to my health. So I am currently eating about 80% raw foods, along with a little bit of fish (salmon or trout) and cooked vegan foods every 4 or 5 days. Research indicates that most diseases occur in a body that is over-acid. Most fruits and vegetables alkalize the diet, so that is my dietary focus. I drink over a pint of raw vegetable juice each day, primarily that made from leafy green vegetables. I can't say for sure, but I think it's the fact that I ate a heaping plateful of leafy greens every day for the last 7.5 years (which is when my symptoms began) that has preserved my hearing so well. I've read some research that indicates that Vitamin A (which is high in leafy greens) suppresses tumor growth and grows new auditory hair cells (in the inner ear) in mice fetuses.
In addition to the herbal extracts and powdered formula I mentioned above, I'm also taking 37 mg resveratrol, 100 mg grape seed extract, and 500 mg Quercetin 3x daily (for their anti-angiogenesis properties). Plus Wobenzym twice a day for the same reason. And 15 mg zinc once daily to reduce my blood-serum copper levels.
I can't stress enough that this program may not work for me or anyone else. Like I said at the beginning of this post, this is all-new territory for me. But I feel like the program I'm on is at least improving my general health, which should be helpful if and when I go in for radiotherapy. I have decided that, should my followup MRI show that my tumor continues to grow, I will seek conventional treatment. I've already had 4 consultations with AN specialists (neurosurgeons and radiation oncologists) and have 2 more lined up. I am leaning heavily toward CyberKnife at Stanford if I need it, but that's fodder for another post.
It is my wish that this post is helpful to someone else. I offer it with the deepest humility (even if that's not evident in my hurried writing) and knowing that everyone's path is different. The treatment we choose is a highly personal matter. Hopefully this post will spark more research and discussion by others.
