ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: Tumbleweed on January 26, 2008, 05:44:59 pm
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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.
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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
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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
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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
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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
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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.
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... 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...
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Tumbleweed...very interesting posts! Please do keep updating how things are going. Good luck with your experiment! It's quite fascinating!
Kathleen
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Tumbleweed,
Interesting post, I`m taking Pau D` Arco ............trying to avoid any and all surgery !
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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!!
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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.
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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
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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.
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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
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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
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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.
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Hi Tumbleweed, I don't think you should be too disappointed about your MRI results. - as you say, there is a margen of error. I would like to share with you what the Danish expert, Dr. Jens Thomsen, told me when I went for a follow-up consultation a few weeks ago. He told me to be thankful to be a "wait and watch" patient who had such manageable symtoms, and who was still maintaining a status quo quality of life! In Denmark the recommendation for the majority of "wait and watch" patients is to postpone treatment (surgery or cyberknife) as long as possible. (In my case, the tumor will not be viewed as necessary to treat unless it grows 10mm outside of the IAC. (Mine is still tiny - 11-12 mm - appr. 3 mm protruding outside the IAC.)) My symtoms are very similar to yours - Dr. Thomsen also said that chances of hearing preservation are very good if the hearing loss is only slight the first few years. In Denmark (yes, we have socialized medicine) the program for treatment is: the first 5 years - one annual MRI. If the tumor doesn't grow (or measure +/- 2mm) in that period of time, the next step is one MRI scan every other year for 6 years. I wasn't able to get any detailed statistics about the size or condition of the "wait and watch" patient group in Denmark. Being a professor, he was quite expectedly very adament in assuring me there was no way my tumor was going to shrink! I asked about spontaneous remissions, and his answer was - it won't happen. So I kept all my thoughts on wholistic and natural therapies to myself. I have a 'team' of people helping me with the regime I have chosen for myself - they keep cheering me on - so the bottom line is, trust your intuition - be patient, forget about the AN and focus on everything else that's still in function! Final comment - I feel that the cranio-sakral alleviates my symtoms so much that I am attending a basic course to learn more about how it works.
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Hi Tumbleweed-
I just had time to read through your posts again and found it fascinating. Although I opted for surgery, I am a believer in diet and nutrition, and belieive that a healthy diet has helped my recovery. I hope you'll keep us all updated on your progress. Thanks for sharing such specific information!
Debbi - eating my veggies!
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In Denmark the recommendation for the majority of "wait and watch" patients is to postpone treatment (surgery or cyberknife) as long as possible. (In my case, the tumor will not be viewed as necessary to treat unless it grows 10mm outside of the IAC. (Mine is still tiny - 11-12 mm - appr. 3 mm protruding outside the IAC.)) My symtoms are very similar to yours - Dr. Thomsen also said that chances of hearing preservation are very good if the hearing loss is only slight the first few years... Final comment - I feel that the cranio-sakral alleviates my symtoms so much that I am attending a basic course to learn more about how it works.
Thanks for everyone's support. Janie, did you mean to say that the chance of hearing preservation are very good if the hearing loss is only slight within the first few years after the initial onset of symptoms/diagnosis or within the first few years after treatment (CK, GK, FSLR or surgery)? I understand that all treatment protocols risk a degradation of hearing, so please clarify. Thanks!
I'm also fascinated by your success with cranio-sacral therapy. I imagine that your tinnitus may improve with this treatment, but does it also affect your hearing ability and/or balance? I expect not, but would love to know.
Many thanks,
Tumbleweed
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Hi Tumbleweed - to clarify - Dr. Thomsen was talking about patients on the "wait and watch" list - if hearing loss was minimal the first few years, he said chances of hearing preservation were good. I've found that my regime of cranio-sakral treatment, Alexander teknik, Qi Gong exercising, running, and cykling all together have helped all my symtoms - both balance and speech discrimination. There is a noticable calming effect immediately after a cranio-sakral treatment session. I have constant "white noise" in my ear - and a sensation of fullness, which also fluctuates - sometimes disappearing for a few hours in the morning, after a QiGong 'workout' or CS treatment. My hearing (right side) is -10 DB compared to my left ear on the higher frequencies - but actually still in the normal range. I have problems hearing conversation in a large group - but these symtoms were much worse last fall. I can now use my right ear for phone conversations - which wasn't possible before Christmas. Balance issues - I can train my balance but sudden movements - bending downwards towards the floor when standing up, for example, do throw me off a little. When I'm tired in the evening my balance gets a little "off". Balance has all in all improved drastically since fall. At my last visit (in May) to my own ear doctor, I had a balance test (don't know what its called - but the one where you get hot and cold air in your ears and eye reflexes are measured) - there was a measurable reflex on my right side) I have only had 2 previous tests - one in October and one in January - both preivous tests showed absolutely no reflex on the right side. (I was needless to say enthralled, but my ear doctor didn't think it meant very much - sigh!!) I think my strategi is to do everything I can to keep my quality of life status quo - I would say that the diagnosis has made me appreciate what I have much, much more. Every day is precious to me now.
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Hi, everyone:
Well, I talked with Dr. Chang today about my followup MRI results. He concurs that my tumor has grown faster than the average AN does. He noted that most people focus too much on the change in tumor measurement along a single axis and not on an increase in tumor volume. My tumor grew from 1.9 cm (some doctors measured it to be 1.8 cm) at diagnosis to 2.1 cm at 6-month followup -- at least a 10% increase (in the oblique transverse measurement). But more worrisome to Dr. Chang is that my tumor volume has increased about 60% in the past six months. [To calculate the volume of a tumor, multiply the measurements in centimeters on all 3 axes (oblique transverse x oblique AP x oblique craniocaudal). The resulting figure is the volume of the tumor in cubic centimeters.] And whereas six months ago my tumor was 1 to 2 mm away from my brainstem, it is now touching (but not denting) it. So the longer I wait to get treated, the more I expose important structures like the brainstem to radiation by virtue of it being in ever closer proximity to/involvement with a growing tumor.
I've made my decision that I will have CK treatment. The question is how soon. Dr. Chang said that I can pretty safely wait 2-3 months (after my last MRI in mid-May) to have treatment, so that I may do an important business trip at the end of July without worrying about post-treatment side effects. But considering that the rate of growth of my tumor is above average (which tells me it may be accelerating), I might want to get the treatment before leaving on my trip and just risk having to cancel it if I get too wiped out (from taking Decadron post-CK or from side effects if the tumor swells after getting zapped).
I'll eventually ask Dr. Chang about possible benefits and/or risks of taking anti-angiogenesis supplements in the week or so before treatment and also post-CK. But for now, I've got enough on my plate to digest.
Tumbleweed
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Hi Tumbleweed,
Sorry to hear the news - I think the decision to go ahead with CK in your case is a good one - it's a good thing you've been doing so much to keep healthy - I'm sure your overall physical condition at the time of CK influences the outcome - so keep us posted - and good luck - hope you can enjoy the summer in spite of what is ahead for you.
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Hi Tumbleweed,
Your tumor volume calculation would be a very rough estimate, representing the tumor as a cube. See the http://anausa.org/forum/index.php?topic=1491.0 thread which calculates tumor volume as an ellipsoid (think of it as a flattened sphere). It's easy to do and will give you a better tumor volume number to work with. I hope that's helpful.
Good luck with your CK treatment.
Regards,
Rob
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Hi Tumbleweed,
Your tumor volume calculation would be a very rough estimate, representing the tumor as a cube. See the http://anausa.org/forum/index.php?topic=1491.0 thread which calculates tumor volume as an ellipsoid (think of it as a flattened sphere). It's easy to do and will give you a better tumor volume number to work with. Rob
Thanks a bunch for the formula, Rob! Your logic makes perfect sense. By that calculation, my tumor volume has grown 52% (in the past six months). But the resulting volume figure is a lot smaller than what I came up with using the formula for a cube (which, I agree in retrospect, doesn't make sense).
Best wishes,
Tumbleweed
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Hi Tumbleweed,
I was on a similar diet to yours. For one year after my diagnosis, I tried to heal myself holistically. I took most of the herbs and vitamins you have been taking. I also drank 2 gallons of water a day and practiced oil-pulling (ancient practice of detoxification). I grew my own wheatgrass for juicing. I also practiced yoga, meditation and visualization. I did acupuncture, massage, chiropractic, saw well known healers and tried everything to heal myself naturally. I've been an organic vegan for 8 years and truly believed that I could heal myself through diet, exercise, visualization, meditation and mind over matter practices. For one year, my entire life was devoted to healing myself. I was surprised to see my tumor stayed the exact same size for one year- 3.1cm. I thought I would see some shrinkage when I had my MRIs, but it didn't shrink. It also did not grow. It may not have grown anyway, I just don't know, these tumors are very unpredictable. I finally decided to have the surgery in December followed by cyberknife at Stanford in April for residual tumor. I felt very healthy going into surgery and have been doing ok. I just could not continue with a tumor that size pressing on my brainstem without seeing any results from all that I was doing. I'm very grateful to western medicine for the treatments that I have had. I still incorporate a very healthy vegan diet, exercise, yoga, meditation and everything I was doing before into my life post treatment lifestyle. My body feels healthy and I know all of the vitamins and herbs, exercise and meditation helped me to be stronger both physically and emotionally for the medical treatment.
All the best to you,
kelli :)
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Dear Kelli:
Thank you so much for your very thoughtful response. I hung on every word you wrote. I really feel like I gave my holistic program the best shot I could. I was very disciplined and well-researched in my approach. Still the tumor grew. It sometimes leaves me feeling a little guilty, like I didn't try hard enough, or I overlooked some important detail. "Maybe if I just give it six more months..." I know this is just my mind rebelling against the choice I must now make. A choice which shakes my belief system that nature can heal almost anything if one's approach is scientific and disciplined. I've struggled with feelings of defeat the past week. I'm mostly taking this in stride, but all the "what ifs" won't leave me in peace.
Your post has helped give me the peace and resolve I was seeking. You are the only person I know who also tried a holistic therapeutic approach to treating this specific type of tumor and with the same dedication, scope and intensity as I. Not to say there aren't other people out there who have also tried the same, but you are the only one I'm aware of who has. Hearing your story gives me peace of mind, knowing I did what I could and that trying another six months of the same approach probably wouldn't yield any better results. Now, with my tumor growing, and growing at a relatively fast clip, it is time for me to give western medicine a go.
I, too, am really glad I had a chance to give the natural treatments a try. Otherwise, I would've always wondered if I could've reversed the illness myself but gave up without trying. (And because of the program, I have definitely become healthier in all other regards... besides this one nasty growth.) Now I know that CK is the right path for me. Your message was exactly what I needed to hear, as I was planning on scheduling my CK treatment tomorrow (for sometime in July).
Thank you so much again for your support, Kelli.
Sincerely,
Tumbleweed
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H ithere! I was diognosed Aug. 2007 with approx.1 cm AN. Have been watch and wait with 1 MRI in Mar. 2008 coming back "stable". I've changed my diet, no caffiene ,green teas ,vitmins, mineral ,herbs, protein drinks, eating healthy, exercise. Next MRI in Sept. 2008. If stable again going to yearly MRI`s Got my fingers crossed with minimal symptoms. Also going thru Neuromonics which seems to be helping my one main sympton, tinnitus. I`m hoping a healthy lifestyle will also make the difference . Gool Luck, Micky
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Hi Tumbleweed,
I know how you feel. I still wonder if there was some essential thing that I left out of my healing program. I had to surrender that for some reason I had to have medical treatment for this AN. I tried so hard for an entire year to do everything in my power to heal myself. My tumor was large and probably took a long time to get to that size. It was risky for me to watch and wait while doing my healing program, but I believe we do have the power to heal ourselves through conscious effort. I was so very disappointed that my MRIs showed no improvement. I felt as though I had failed and questioned my belief system. After being turned down for radiation at several places because of the size, I knew I had to have the surgery and use all of my knowledge of nutrition and healing throughout the whole process. It was so hard to go into the surgery knowing I would lose my hearing, which was still normal. The dr's could not believe my audiogram showed only a 5% loss of hearing. I was terrified of brain surgery and all of the possible complications. I surrendered to the fact that I just needed to have it done knowing I would also need follow up radiation because of the location of the tumor. I had both treatments within 4 months of each other and I am using nutrition, exercise and positive thinking now for my recovery. The surgery was very hard on my body, I still have balance issues, some double vision and SSD. Then having cyberknife left me feeling zapped and tired. Most people do ok with cyberknife, I just think that because my body was still recovering from surgery the radiation made me extra tired. This whole experience for me has taught me many lessons. Sometimes things happen to us and we have to do our best and make the most of our situations. I'm so grateful that modern medicine was able to treat this AN. It has been a difficult journey, but there have been many gifts in the process. I feel very blessed to have come through this all and there is light at the end of the tunnel. Every day gets better and better for me and my body is recovering from the surgery very well. I continue to keep a positive outlook, exercise 2 hours a day and nourish my body with healthy food and supplements. I have a wonderful life and I am learning to deal with the SSD and post surgical problems. I am feeling better and I credit my healthy lifestyle to my continuing recovery.
Everything happens for a reason and this has been a huge learning experience for me. I'm also grateful to all of the people on this site for their positive encouragement and helpful information.
Wishing you health and happiness as you continue your healing process.
You will be in my thoughts and prayers for a successful CK experience.
All the best,
kelli
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Dear Kelli:
Thank you so much for yet another empathetic post. Hearing your story makes me feel I'm not alone. The emotions you describe and the process you went through leading up to the decision to get conventional treatment are so much like mine.
Even today I find myself questioning my decision to go ahead with CK, rather than try six more months on an adjusted natural program. But my rational mind knows I'm beyond that point and must now put my fate in the hands of doctors.
I called Stanford on Friday (yesterday) and scheduled my CK for the week beginning July 7th. I feel like I'm in a dream state; more accurately, a nightmare. I can't believe this is happening. Somebody wake me!!
I received words of wisdom from a friend of mine last night. He is a melanoma survivor. He said this is a journey I will take one step at a time. In other words, I shouldn't think what I have to do or what I will go through to get to the place I ultimately want to be. That's too big. But I can handle the next hour, the next day and eventually the next week. Soon a month and then a year will go by, and hopefully I will be at peace with the journey taken.
Tumbleweed
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Steve, you wondered a few posts back about Dr. Chang's thoughts on the safety of continuing to take my anti-angiogenic supplements (curcumin, resveratrol, quercetin, etc.). concurrently with CK treatment and afterwards. I asked one of Dr. Chang's nurse practitioners about this and she said they have found no difference in CK outcome no matter what natural supplements patients took. She said I was free to take whatever I wished, both during the week of treatment and afterwards. I'll also ask Dr. Chang about this when I see him, but this is the premliminary answer.
That said, I plan to stop taking those supplements during the week of my CK treatment and for a few weeks afterwards. Instead, I'll focus on taking herbs and supplements that reduce inflammation and nourish nerves, in the hope that will reduce side effects by nipping tumor swelling in the bud and fortifying any cranial nerves that took a hit from the radiation.
If anyone is interested, I'll post my new (anti-inflammatory/nerve tonic) herbal/supplements program on this thread. But since my anti-angiogenic program of the last six months was a dismal failure, I won't take offense if nobody is interested!
Tumbleweed
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Tumbleweed -
Those were very wise words your friend offered you. I think he's right. One thing at a time...
And just because your approach might not have gotten rid of your AN, doesn't mean it was a total loss - I'm sure it has kept you much healthier than those of us who are not as conscientious as we should be.. :-[ Going into any treatment in the best health possible will certainly help you in the long run. And besides, you never know if you don't try so at least you won't be able to say "what if I had tried a natural approach first?".
I would be interested in hearing what the new program entails. Heck, I'm the one who said I'd try boiling eye of newt in a cauldron in my backyard if I thought it would help my facial paralysis! I'm sure your program will sound much more appetizing that that!
Good luck with your CK. Lots of people have had excellent results from it and I'm sure you'll be one of them.
Lori
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Hi Tumbleweed,
Taking it one day at a time is very important. Even taking it moment by moment helps throughout this process. I remember the first week after surgery, I had to crawl to the bathroom because I was so dizzy. It will get better. What really helped me for cyberknife was to bring in my own favorite CD and ask them to play it very loud. It was very helpful for me to focus on the beautiful music and keep my eyes closed. The music took me to another place and I was able to relax. I was also told after 1 ck treatment that I was done. They had changed the plans and I just went in 1 day instead of 3. I am interested in what herbs and supplements you plan to take after CK for your nerves.
All the best to you,
kelli :)
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Thanks, Kelli and Lori, for your supportive words. And Kelli, what a great idea you shared to bring music to the CK treatment. I'm sure I'll be nervous when the time comes. The music should be a big help in my staying calm.
I'm just beginning to develop my post-CK program, so it's bound to change a little. But here's my current thinking:
Foods that are nerve tonics:
raw garlic (raises the respiration rate of cells, thereby increasing oxygen which encourages the regrowth of nerve tissue).
leafy green vegetables (high in vitamin A, indicated in some studies as being beneficial to hearing)
salmon and trout (rich in B vitamins and omega-3 fatty acids, both nourishing to the central nervous system)
Brewer's yeast (rich in B complex)
Supplements that tone the nervous sytem:
vitamin E
B complex
calcium (take with magnesium to enhance absorption)
To try and prevent tumor swelling, I plan to continue taking Wobenzym or Flavenzym; these are different brand names for exactly the same formula of systemic enzymes (bromelain, papain, etc.) that have been shown to reduce inflammation.
I will also take daily an anti-inflammatory herb formula which will likely consist of turmeric, burdock root, licorice root and ginseng root. Licorice root is a natural source of adrenocorticotropic hormones; that is, it is somewhat similar in action (though much milder and less effective) to Decadron. To be sure, if my tumor swells and my doctor advises I take Decadron, I will. But the licorice root -- along with the other herbs -- will hopefully have enough of a prophylactic effect that I won't need to take the Decadron. The "ounce of prevention is worth a pound of cure" philosophy.
Willow bark (from which aspirin is made) is an effective anti-inflammatory herb that would probably make a fine addition to the formula mentioned above, but my stomach is sensitive to the salicylic acid content, so I don't have much experience with that herb.
That's my two cents...
Best wishes to all,
Tumbleweed
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Tumbleweed and Kelli,
I know you are disappointed that a natural approach didn't work. I think that ANs, once they are big enough to be detected, are like broken arms - they are the sort of thing that you have to go to a hospital to get fixed. If you could have been diagnosed when the AN was 1 mm, the results might have been quite different.
It doesn't surprise me that Dr. Chang's group doesn't know of a difference made by supplements after treatment. They are mainly interested in tumor control and similar metrics. I think supplements may make a big difference in the quality of life after treatment - an area often neglected by conventional medicine, though that is starting to change now. The stories on this forum show that there is more to AN treatment than just stopping the tumor growth.
I hope you don't lose faith in the power of diet and lifestyle and holistic health. I am afraid that you are something of pioneers as far as searching for better ways to deal with ANs. Even if they don't help you directly, your efforts may well help others find successful ways of reducing the impact of ANs on our lives. It is worth a try.
Thomas Edison, when asked about his many failed attempts at creating a light bulb, said something like "They weren't failures at all. Finding out what doesn't work is the first step towards success."
Best wishes and best of health,
Steve
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Tumbleweed and Kelli,
...I hope you don't lose faith in the power of diet and lifestyle and holistic health. I am afraid that you are something of pioneers as far as searching for better ways to deal with ANs. Even if they don't help you directly, your efforts may well help others find successful ways of reducing the impact of ANs on our lives. It is worth a try.
Steve, thanks for sharing that. I wasn't sure how my posts would be received and thought some people might write off my posts as harmful quackery or simply disillusioned thinking. I posted my program truly because I thought there was a small chance it might help someone. Had it been valuable information and I had not shared it, I would've been guilty of neglecting my duty to other human beings suffering from the same disease. I offer my thoughts on this board with deep humility, knowing this is a disease that is not easily controlled.
I agee with you that this condition is like a broken arm that must be fixed using conventional medicine. Some conditions are like that; western medicine has its place, and I'm grateful for it. Perhaps natural modalities would have worked before the tumor got so big and "gathered a head of steam."
I'll continue with healthy diet and exercise, even though my tumor is seemingly unresponsive to my efforts. Perhaps my program has helped preserve my hearing more than would have been otherwise (one consulting neurosurgeon said that my hearing is "phenomenal" for a tumor of this size). And when I get the CK treatment next month, I want to be as healthy as I possibly can be so my body can eliminate any post-treatment inflammation as effectively and rapidly as possible.
Anyway, thanks for your support, Steve.
Tumbleweed
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Tumbleweed,
I am sure that you helped yourself with your natural approach. I have followed a diet, exercise and supplement regimen since I was 18, way before mainstream doctors recognized it. In fact, I have been kicked out of the doctor's office more that once for even mentioning Vit. E. Times , fortunately, have changed! When I was diagnosed with a huge tumor at 25, I had perfect hearing and speech discrimination. Doctors could not believe their ears. They could not believe their eyes either since I looked and moved perfectly, too. There are studies out there that document a positive effect of vitamins, minerals and herbs on a human body and its functions. I do think they help enormously. Your body has to be strong and its fuctions maintained before life saving treatments like surgeries and that is where so called alternative approaches can help. Otherwise, there is nothing to save!
Eve
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Thanks, Eve! Words of wisdom.
All the best,
Tumbleweed
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Thanks Steve for your supportive and kind words. When I told my surgeon I am going to try and heal myself naturally, I gave him a good chuckle. Followed by a stern warning that I shouldn't wait on a 3.1cm tumor. I'm glad that I tried and will continue my healthy diet throughout my recovery process.
Thanks Tumbleweed for sharing your post treatment supplements. I am taking these now. The wobezyn also has chymotripcyn (sp?) in it which I read has very strong tumor fighting properties. I read a story on the internet how a man cured himself of his brain tumor by taking megadoses of chymotripcin. I was only able to find it in the wobezyn.
I wish you all the best with your CK experience.
Best wishes,
kelli :)
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Thanks Tumbleweed for sharing your post treatment supplements. I am taking these now. The wobezyn also has chymotripcyn (sp?) in it which I read has very strong tumor fighting properties. I read a story on the internet how a man cured himself of his brain tumor by taking megadoses of chymotripcin. I was only able to find it in the wobezyn.
I wish you all the best with your CK experience.
Best wishes,
kelli :)
I hope it helps, Kelli. FWIW, I took the standard dose of Wobenzym for the six-month period between initial and followup MRIs: 3 pills first thing in the morning and 3 at night on an empty stomach. (Make sure you take it on an empty stomach and wait at least 30-45 minutes before eating anything after taking the Wobenzym, or it will just digest your food and not the inflammation-based proteins.) In retrospect, maybe I should've been more aggressive and taken double the dosage suggested on the bottle's label, as my tumor grew during my six-month interim period between MRIs.
An alternative product to Wobenzym is FlavenZym, made by NSI. It's the same exact formula as Wobenzym (the same ingredients and in the same proportions), but costs much less than Wobenzym. You can order Flavenzym online at www.vitacost.com. If I remember correctly, my bottle of 800 pills only cost around $65.
Best wishes,
Tumbleweed
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Kelli, here's the direct link to FlavenZym on Vitacost's website:
http://www.vitacost.com/NSI-FlavenZym-The-Ultimate-Systemic-Enzyme-Formula-Compare-to-Wobenzym
Best wishes,
Tumbleweed