Author Topic: My wholistic, natural therapeutic approach  (Read 17093 times)

Tumbleweed

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My wholistic, natural therapeutic approach
« on: January 26, 2008, 05:44:59 pm »
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.
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

nancyann

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Re: My wholistic, natural therapeutic approach
« Reply #1 on: January 26, 2008, 05:58:46 pm »
Hi Tumbleweed:  Thank you so much for this insightful information.   I think it's wonderful that you've been able to keep your AN & hearing in 'check'.
It's great that a passion you have may also be helping you deal with the AN monster - HOORAY FOR YOU!!

I love learning about new approaches to one's health,  BRAVO to you!

Always good thoughts,  Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
right facial paralysis
good to go.

jerseygirl

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Re: My wholistic, natural therapeutic approach
« Reply #2 on: January 26, 2008, 06:34:14 pm »
Tumbleweed,

What a great post! I have been a long-term supplement, diet and herb user primarily because diabetes and heart disease run in my family on both sides. ANs can now be treated but diabetes and heart disease decrease one's lifespan and affect quality of life tremendously. In addition, people need to be strong enough to withstand surgeries and treatment for other diseases but diabetes and heart disease make it impossible!

I would love to know if the brand of all the herbs you take makes a difference. I found that with Ginkgo Biloba, it does. I take Ginkoba 120mg a day and it reduces my roaring tinnitis which I got after surgery #1 to nothing or almost nothing. I do exercise every day (Pilates, Yoga, strength training, treadmill, balance). My sugar is low at 76. Where do you get your supplements and what do you take and how much? 

                         Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

sgerrard

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Re: My wholistic, natural therapeutic approach
« Reply #3 on: January 26, 2008, 06:46:17 pm »
Hi Tumbleweed,

First let me say this: I don't think you are nuts. ;) And thanks for the detailed post, it is useful for reference. Also, I think your leaning to CK at Stanford is a good idea. It went well for me.

Now some comments on the herbal approach. I do the simpler version: taking a supplement with vitamins, minerals, and a small mix of herbs, and eat lots of fruit. It seems in general to help me maintain a healthy state. The key feature for me is that I can actually maintain it every day, as opposed to your more ambitious approach.

I think there are some issues with trying to treat ANs in particular this way. They grow very slowly most of the time, and the tissue is basically normal Schwann cells, with some tiny tweak in their regulatory mechanism. That makes them hard to distinguish from normal Schwann cells. It leads to the general problem of herbal or chemical approaches, which is how do you make the bad cells stop growing, and keep all the good ones healthy at the same time?

I am afraid that if you really shut down angiogenesis enough to stop an AN from growing, you would be interfering with some other part of your health at the same time. Shutting down inflammatory response could have the same issue - shut it down too much, and you get other problems.

It would be great to hear that you actually did shrink your tumor, and I'm not saying it is not possible, only that I think the nature of ANs makes it particularly challenging. I look forward to hearing your results.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Tumbleweed

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Re: My wholistic, natural therapeutic approach
« Reply #4 on: January 26, 2008, 07:30:47 pm »

I would love to know if the brand of all the herbs you take makes a difference. I found that with Ginkgo Biloba, it does... Where do you get your supplements and what do you take and how much? 

                         Eve
[/quote]

Eve, in my experience quality always makes a difference. I think people's experience with not getting any useful results from using poor-quality herbs and supplements has given these natural substances a bad name in some circles. The freshness and potency always influence results.

I usually take herbs in their whole or tincture form, but the amounts naturopath Donald Yance generally recommends for stopping angiogenesis are so large that I've resorted to using some concentrates (i.e., powdered extracts of the active ingredients of herbs and foods), including:

Nature's Way Resveratrol (also contains grape seed extract), 1 capsule 3x daily. Each capsule contains 37.5 mg resveratrol (from Japanese knotweed), 100 mg grape seed extract, 200 mg red wine extract, and 200 mg red wine powder.

Jarrow Quercetin, 500 mg: 1 capsule 3x/day.

I've generally found that Gaia makes the most potent/effective liquid extracts (tinctures) of herbs. They don't offer reishi and maitake mushroom extracts, however, so I've been taking New Chapter brand instead, 1 dropperful of each 3x a day. I also take 1 dropperful each of astragalus root, ashwagandha and milk thistle 3x/day (Gaia brand if available, Herb Pharm otherwise). Plus 3 Wobenzym pills (containing bromelain, papain, and other enzymes) 2x/day at least 1 hour before meals. (If you take it after meals, it will only digest your food!)

Generally, the best tinctures are those that look the darkest when you hold the bottle up to the light. These are often triple extracts. But some extracts, such as ashwagandha, are very clear-looking because they don't contain many precipitants. As for bulk dry, whole herbs, let your nose be your guide -- if it smells strong when you open the jar or bin at the store, then it's probably very fresh. If it has no smell, you're basically just eating old fiber.

***PLEASE NOTE: I must caution everyone that the amounts of herbs and supplements I'm taking would likely make some people feel ill and be counter-productive if not downright harmful. I therefore advise a much more moderate approach. I am very used to taking strong herbs and have done a lot of detoxification over decades in my lifetime, which makes a huge difference. So start out slowly, with much smaller doses, and by all means consult a naturopathic doctor to determine safe dosages and to monitor your tolerance.
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Tumbleweed

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Re: My wholistic, natural therapeutic approach
« Reply #5 on: January 26, 2008, 07:48:28 pm »
... Now some comments on the herbal approach. I do the simpler version: taking a supplement with vitamins, minerals, and a small mix of herbs, and eat lots of fruit. It seems in general to help me maintain a healthy state. The key feature for me is that I can actually maintain it every day, as opposed to your more ambitious approach.

I think there are some issues with trying to treat ANs in particular this way... It leads to the general problem of herbal or chemical approaches, which is how do you make the bad cells stop growing, and keep all the good ones healthy at the same time?

I am afraid that if you really shut down angiogenesis enough to stop an AN from growing, you would be interfering with some other part of your health at the same time. Shutting down inflammatory response could have the same issue - shut it down too much, and you get other problems.

It would be great to hear that you actually did shrink your tumor, and I'm not saying it is not possible, only that I think the nature of ANs makes it particularly challenging. I look forward to hearing your results.

Steve

Steve, I agree with you that my approach is extreme, takes a lot of discipline and is very iffy as to whether it will shrink the tumor. My decades of experience with taking herbs and supplements, thousands of hours of study in natural healing modalities, and ability to self-monitor and interpret for myself any adverse reactions makes my program feasible for me to maintain but possibly not feasible (or even advisable) for very many others (if anybody!). I certainly don't know if it'll work. Yeah, it's extreme, but so is beaming high doses of radiation into my brain! Not to mention having a tumor in my head in the first place.

Time will tell. I'll report back to everyone in late May what the results of my follow-up MRI are. But I'm by no means trying to suggest my program will work for anyone, including me. (That's why I'm consulting neurosurgeons and radiotherapy specialists as a backup.) I'm simply sharing my research and documenting my quest for answers along this topsy-turvy journey we're all on. I felt that waiting til my followup MRI report comes out to post this infomation might have resulted in someone not having gotten potentially useful info in the interim. But reader beware: this is all a big experiment for me and it'll be months before I know whether it'll work.

At least so far, I am feeling healthier and my tinnitus is already subjectively quieter most of the time and comes on less frequently. But subjective results can be misleading. The MRI will be much more reliable and conclusive. TBC...
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Gennysmom

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Re: My wholistic, natural therapeutic approach
« Reply #6 on: February 11, 2008, 06:07:57 pm »
Tumbleweed...very interesting posts!  Please do keep updating how things are going.  Good luck with your experiment!  It's quite fascinating!

Kathleen
3.1cm x 2.0cm x 2.1cm rt AN Translab 7/5/06
CSF leak 7/17/06 fixed by 8 day lumbar drain
Dr. Backous, Virgina Mason Seattle
12/26/07 started wearing TransEar

Pat

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Re: My wholistic, natural therapeutic approach
« Reply #7 on: February 11, 2008, 07:22:43 pm »
Tumbleweed,
 Interesting post, I`m taking  Pau D` Arco ............trying to avoid any and all surgery !
 
AN diagnosis 6 20 2007
2cm..... left side S.S.D.
"Wait / watch" right now
L.Fredrick Lassen , M.D., F.A.C.S.
Suffolk, Va.

"Attitude......the difference between an ordeal or adventure"

rebecca1

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Re: My wholistic, natural therapeutic approach
« Reply #8 on: February 25, 2008, 08:20:16 pm »
Tumbleweed - I think this is wonderful!!  My husband is not only battling AN, but NHL (lymphoma- tumors of the lymph nodes).  The NHL community is HUGE on these exact herbal therapies, and some believe really making a difference.  NHL is very much like AN in that watch and wait is a very important part of delaying treatment and only using treatment when absolutely necessary to avoid "using up all your treatment options".  But many who use herbal therapies are seeing their time between treatments extended dramatically, and many are convinced that herbs are responsible.  My husband just finished chemo so we are about to start our diet, utilizing many of the exact herbs you mentioned for the exact reasons you mentioned, anti-angiogenesis, anti-inflammatory,etc.  I don't know if it will make a difference with his AN, but I am convinced that this has worked for many with lymphoma.  A great website with with a wealth of information is www.lymphomasurvival.com.  Again, it is for NHL, not AN,  but the primary goal of stopping tumor growth is the same and you will find an unbelievable amount of information on this very topic.  Best of luck to you!!

Janie

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Re: My wholistic, natural therapeutic approach
« Reply #9 on: March 01, 2008, 04:21:18 pm »
I just joined the Forum - diagnosed in January for an AN 11 x 4 x 5 - I've very interested in alternative therapies - because I don't want to just "wait and watch" -  I'm waiting to see specialists at the ENT cliinic on March 11th. In the meantime I've consulted a homeopath, a kinesiolog and receive cranial-sarkal therapy (really helps the tinnutus) I've been eating (what I thought was!) a good diet because of other health issues (hypertension and cholesterol) - I 've started eating more vegetables and drinking herbal teas. I practice Qi Gong, exercise regularly and am trying to ease the stress factors in my life right now.  Thanks for your very detailed description og what you are doing - good luck.
diagnosed January 2008 with intracanicular right-sided AN measuring 11 x 4 x 5 mm
2. MRI scan October 2008 AN measures 13 x 4 x 4
"wait and watch" status
May 2009 - hearing on AN side rapidly deteriating
56 year old GSM technician, amatuer cellist

chocolatetruffle

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Re: My wholistic, natural therapeutic approach
« Reply #10 on: March 02, 2008, 02:05:33 pm »
I just want to share my own regime. Most of these have been advocated by nutritionists and health advocates for years.  I know long time vegans who contracted serious diseases like cancer, so it is not a guarantee as there are other factors in play and the human body is so complex.  But living a healthy lifestyle will definitely give one a healthy well being and strong immune system to face these diseases.
 
1.  abnormal cells thrive on acid environment, so reduce intake of red meats and increase intake of fish. Also limit refined sugar.
2.  put the body into an alkaline environment, so daily diet should be 80% variety of fruits, vegetables, whole grains and nuts.
3.  avoid high caffeine products like tea, coffee, but green tea is an alternative with its antioxidants.
4.  Exercise daily.
5.  If current diet is NOT varied or adequate enough, use basic nutritional supplements to build up cellular nutrition, these are:

mineral complex (e.g calcium, magnesium, zinc, copper, selenium, iodine etc)
carotenoids (beta carotene, lycopene, lutein, alpha carotene)
essential fats (flaxseed and fish oil)
bioflavaniod/antioxidants (e.g grape seed extract, bilberry etc)
vitamins (A, C, E, D3, K, B vitamins, folic acid, biotin etc)
other nutrients (CoQ10, glutathione, alpha lipoic acid, silicon, boron, choline, trimethylglycine, inositol etc)

I also recommend a book by Dr Ray D. Strand, titled "What your doctor doesn't know about nutritional medicine may be killing you".  It was given to me two years ago, but at that time it had no relevance to me. Today I am keeping a close eye in what I put into my body, I am now a better person overall - spiritually, mentally and physically.

p/s yeah, i know, chocolate got caffeine! It is my one and only indulgence  ;D


chocolatetruffle


2.8 cm left AN
Translab @ House/St Vincent's 11/27/07
Drs. Brackmann, Schwartz, Wilkinson, Stefan

Tumbleweed

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Re: My wholistic, natural therapeutic approach
« Reply #11 on: May 25, 2008, 10:47:57 pm »
I just got the results of my follow-up MRI and audiogram and am reporting back to everyone as promised. Bottom line: my AN has not shrunk. In fact, it may have grown significantly in size. My audiogram shows my hearing is essentially unchanged. I'm waiting to hear from Drs. Steven Chang and Derald E. Brackmann for their analysis of my MRI. In the meantime, here are preliminary details from my layperson perspective:

The CPA (cerebello-pontine angle, or brain) segment of my tumor has increased in size from 1.9 cm (oblique transverse measurement) to 2.1 cm. I seem to remember that MRIs have a 1-2 mm margin of error. That is, if I remember correctly, the MRI's measurements can be off by 1 to 2 mm (either smaller or larger) depending on where the slice of film was taken, which location differs slightly with each MRI taken. If this is the case, it's possible my tumor has not actually grown, but that the MRI just took a snapshot at a wider portion of the tumor this time around. That said, both the oblique AP and craniocaudal measurements also increased by 2 mm, making me more concerned that the tumor has actually grown in size. I'm waiting to hear Drs. Brackmann and Chang's analyses before I conclude my tumor has grown. But one thing is certain: my regime (detailed at the head of this topic) did not shrink my tumor. I am very disappointed. A saving grace is that the cisternal component (that portion inside my IAC, or internal auditory canal) did not grow, at least in the oblique transverse measurement. The lateral extent of the tumor (in plain English, how far it has grown towards the outside of my body) is still 2 mm from the IAC's fundus (the bony barrier between the IAC and middle ear).

As for my audiogram, my response on the affected side was 5 dB worse at some frequencies and 5 dB better at others. The exception was my response at 4 kHz on the affected side was down 10 dB. Due to the fact that I had flown in a small plane over a mountain range less than 2 hours before the followup audiogram was performed -- and my ears may have been slightly plugged up -- my audiologist concluded that any changes compared to results from the last audiogram were within the margin of error and that my hearing is probably unchanged. It has certainly not deteriorated to any large degree. Thank God for that. Next time, I'll fly the day before my followup tests!

As for my regime detailed above: I followed this program without wavering for 3 to 3.5 months. For the following 2 months, I made some adjustments. First, I felt I needed to eat foods (particularly fish) rich in protein and B vitamins more often, as I was beginning to show signs of depletion. I also ate more cooked vegetables and whole grains, and less raw food; I was craving more variety, especially cooked root vegetables (probably for the starch). I cut out the adaptogenic herb tinctures simply because the cost was killing me -- I was spending over $300 a month on herbs and supplements. The adaptogens were the most expensive, so I stopped buying/taking most of them. The exceptions were ginseng and mushroom extracts, which I continued taking. I substituted RM-10, a fermented mushroom extract in tablet form, for the liquid Maitake and Resihi extracts, as the RM-10 had similar ingredients but was less expensive. I also substituted curcumin extract (NOW brand) for the turmeric powder in my herbal formula; curcumin is the active ingredient in turmeric, and has been shown in lab studies to curb angiogenesis (see my notes above at the head of this topic). In summary, I followed the program very rigorously for about 3.5 months and then continued more loosely and with modifications on the program for another 2+ months. But I always took my anti-angiogenesis supplements (resveratrol combo, curcumin/turmeric, and quercetin) religiously for the entire 6 months between MRIs. And I strictly avoided sugar and oily foods that have always increased my symptoms.

I will report on what Drs. Brackmann and Chang conclude regarding my followup MRI and audiogram as soon as I hear from them. I decided a few months ago that I will have Dr. Chang perform CyberKnife on me if and when it's necessary. I suspect CyberKnife is in my near future.

Best wishes to all.
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

sgerrard

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Re: My wholistic, natural therapeutic approach
« Reply #12 on: May 26, 2008, 01:03:40 am »
Hi Tumbleweed,

Oh well. Actually, you may have succeeded in stopping the AN from growing, or slowed it down. It could be that without your program, it would have grown 0.5 cm in each direction. It is hard to give it a fair test, I guess, because you don't know what would have happened if you hadn't done the program. The same applies to maintaining your hearing level.

If it hasn't grown much, do you think you might consider waiting another six months, or will you go ahead and get treatment now? Another thought that occurred to me as I wrote this: would this sort of program help after radiation treatment? You could argue that it might speed up the process of killing off the tumor, or make it more complete. If that made a difference, it would be really helpful to know.

Do post back when you get responses on your MRI from Brackmann and Chang.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Joef

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Re: My wholistic, natural therapeutic approach
« Reply #13 on: May 26, 2008, 07:33:01 am »
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)

 Actually I do believe there is a lot of truth in this .. supermarkets and general stores have been around only for a few hunderd years (if that).. before that.. if you wanted to eat... you had to grow your own, hunt it or fish for it  ;).  For 1000's of years.. our bodies are used to the real food diet .. fruits, veges, fish, and meat once in a while ... All this processed and fast food we have today .. is just to rich in fats and sugers.. our bodies just dont handle if very well .. (I have no idea about tumors, its just extra weight to our bodies ---- hey it can't hurt to be heathly!)

ps ... I still have my one in a blue moon trip to McD's or DQ !  ..  :o  :o :o :o :o
« Last Edit: May 26, 2008, 07:36:59 am by Joef »
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

Tumbleweed

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Re: My wholistic, natural therapeutic approach
« Reply #14 on: May 26, 2008, 10:59:46 am »
If it hasn't grown much, do you think you might consider waiting another six months, or will you go ahead and get treatment now? Another thought that occurred to me as I wrote this: would this sort of program help after radiation treatment? You could argue that it might speed up the process of killing off the tumor, or make it more complete. If that made a difference, it would be really helpful to know.

Steve

Thanks for your thoughtful reply, Steve. I hadn't thought of the potential benefits of doing my program immediately post-radiation treatment, but it did occur to me that I should probably at the very least continue to do the anti-angiogenesis supplements sometime after treatment to deter possible recurrence. The supplements don't bother me at all, so I'll probably consider my taking them to be a "life sentence" (permanent lifestyle change). They are all anti-oxidants (besides specifically exhibiting anti-angiogenesis properties), so they should also be helpful to my overall health. In fact, although my program didn't shrink my tumor -- and may not have even had a significant deterrent effect on further growth -- my overall health improved very significantly on the program. I sleep much better (deeper and longer) now and my digestion and regularity have improved. I used to have heartburn every now and then, but no more.

As for waiting another six months or proceeding sooner with CK, I'm going to take what Drs. Chang and Brackmann have to say under heavy consideration. But if they both think it's reasonable for me to wait another 50 years (talking in hyperbole here), I'll wait. I'm not totally freaked out that I've got a tumor in my brain (although I was initially at the time of diagnosis), and I can live with it longer. Besides, CK won't get rid of it; it'll only kill it and hopefully shrink it somewhat. I've been able to maintain a high quality of life so far, remaining very active and missing no work, with only moderate disequilibrium/imbalance and hearing loss and manageable tinnitus. Because the after-effects of CK (or any other type of surgical/radiotherapy intervention) are potentially significant and degrading (with special concern vis-a-vis my hearing), I'd like to wait until symptoms get worse or the size of the tumor becomes a major concern. At 2.1 cm (oblique transverse measurement) and a volume of 3.28 cubic centimeters for my tumor, I suppose there is still room for further increase in size before CK treatment becomes untenable. But I'll leave that to the experts, Chang and Brackmann.

I'll let everyone know what they say. And if I end up scheduling CK, I'll ask Dr. Chang about the potential benefits and risks (if any) of doing my program -- and especially the anti-angiogenesis supplements -- immediately post-treatment and will report back to the group.
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

 


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