Author Topic: supplements?  (Read 5822 times)

ToneControl

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supplements?
« on: October 16, 2007, 10:18:21 pm »
I'm wondering if any of you have had any experience in taking vitamin/herbal/ayurvedic suppliements as part of your treatment, or to cope with symptoms.

I've done a bit of research on Ginkgo Biloba, and have been taking it somewhat regularly for the past few weeks.  I read of it awhile back as helping some people with tinnitus.  It does (subjectively) seem to be helping somewhat.  I've also had my share of short term memory issues (which my wife can attest to ;)) and Ginkgo is supposed to improve brain circulation and sharpen memory.

I have also recently read several articles favoring fish oil supplements as having a possible positive effect on tumor control.  Anyone have any thoughts?

Finally, my sister, who went through dealing with ITP, a blood disorder a couple years ago, has just sent me some of the Ayurvedic herbal blend Triphala.  Apart from a lot of general cleansing/detoxification claims, it is purported to also help control tumor growth.  She had good results getting her immune system back in line with a combination of Ayurvedic and traditional Chinese medicine treatments  when the Western medical establishment had little to offer her but Prednizone and various drugs.

I'll be heading to Stanford for CK in about a month, and the way I see it, one of the factors to choosing radiation as opposed to surgery, is the fact that I will be looking at possibly many months between treatment and when I start to see (hopefully!) tumor shrinkage.  It seems that if there are things I can take in the meantime to help with the brain circulation and tumor control, now is the time to explore them.

Thanks in advance for any insights you might be able to share!

- robert

1.0cm AN, diagnosed July 2007.  Treated Cyberknife at Stanford Nov. 14-16 2007, Dr. Chang, Dr. Soltys.  -  42 year old audio engineer, 15 dB PTA loss, 100% SDS, tinnitus at time of diagnosis.  Now we wait and see...

jb

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Re: supplements?
« Reply #1 on: October 17, 2007, 05:40:17 pm »
You might want to check with Stanford on the supplements prior to CK.  I was advised to discontinue herbals and any high-dose vitamins prior to receiving radiation.  Apparently it's thought that large doses of antioxidants may counteract the radiation's effect.  I don't know if there are any studies to support this, but that's what I was told by my oncologist's nurse.

I've tried ginkgo, lemon bioflavonoids, magnesium, vitamins B, C, and E, etc., but can't tell much difference in symptoms.  I'm down to a daily multi-vitamin/mineral and fish oil - at least my knees seem to have stopped hurting on this regimen.
2 cm right-side AN, diagnosed July 2006
Cyberknife at Georgetown Univ. Hospital, Aug 2007
Swelled to 2.5 cm and darkened thru center on latest MRI's, Dec 2007 and Mar 2008
Shrinking! back to 2 cm, Aug 2008
Still shrinking (a little), I think about 1.7 cm now, Aug 2009

Shadow

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Re: supplements?
« Reply #2 on: October 30, 2007, 06:28:42 am »
intersting question. I'm in the midst of exploring it with my TCMD right now. He mixes bat's tongues and aligator tail tea ( and a whole bunch of other scary things like chicken lips and wild yak poop.  :) )  that is specific to the indivual. I have had GK to stop th tumour and it seems to have failed. They've given me 6 months and any more growth its time for me to go completely MONO in my hearing.



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ToneControl

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Re: supplements?
« Reply #3 on: October 30, 2007, 11:10:08 pm »
Thanks for your replies, JB and Shadow.

I got a call from Stanford yesterday and was told that there were no contraindications regarding vitamins, herbal supplements, or ayurvedic treatments.  I had backed off until hearing from them, but am now considering trying to get the Triphala my sister sent me down again.

Like you, JB, I have been trying to do a daily multivitamin and lots of Fish Oil.  I'll keep exploring the rest for now.

Thanks again!
-robert
1.0cm AN, diagnosed July 2007.  Treated Cyberknife at Stanford Nov. 14-16 2007, Dr. Chang, Dr. Soltys.  -  42 year old audio engineer, 15 dB PTA loss, 100% SDS, tinnitus at time of diagnosis.  Now we wait and see...

Captain Deb

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Re: supplements?
« Reply #4 on: November 26, 2007, 02:55:16 pm »
According to many nutritionists supplements don't hold a candle to eating healthy foods. Blueberries are supposed to be among the most potent of the superfoods for antioxident qualities. When they are in season, I buy heaps of them and freeze them and have a smoothie made with a cup of them every day. Also blueberry jam on homemade flax/bran/oat bread in the morning. Eating an empty calorie diet of crap junk food and scarfing down supplements like crazy is unfortunately what alot of folks think is healthy eating. Yikes! Like Popeye sez, "Eat yer Spinach!!"

Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Static

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Re: supplements?
« Reply #5 on: November 26, 2007, 04:43:15 pm »
I'd have to agree with Deb, and I don't buy into the fish oil or ginkgo thing because I used to take both and seems I developed this darned tumor anyway and tinnitus, let me tell you about tinnitus...  Anyway, since the vitamin industry isn't all that well controlled, and most research says that you should get your vitamins out of your foods and not out of a pill, I've stopped taking the pills in the past couple of years since they haven't really been doing anything but emptying my wallet!
Never tried bat's tongues or alligator tail tea mixed with chicken lips and wild yak poop tho, sounds interesting Shadow!  Whatever works for ya!
~Karen
3.5cm AN removed 1-21-04
CSF leak repaired 5/04
SSD Right

tony

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Re: supplements?
« Reply #6 on: November 27, 2007, 02:03:10 am »
At risk of being "super" careful here
Many of the suppliments  - e.g. Ginko and St Johns Wort
do have a tendancy to thin the blood
(and the clotting effect is reduced)
- not usually an issue with radiation - but 1000 to 1 chance
should surgery be required later..
Its generally true that thinned blood and surgery dont mix
I am sure you wont have an issue
- but maybe err on the side of caution ?
Best Regards
Tony

TP

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Re: supplements?
« Reply #7 on: November 27, 2007, 07:54:32 am »
I have friends who take large quantities of vitamins and stuff and they really don't seem any more healthy (in fact they seem to have a tendency to be sick more often) than friends of mine who eat healthy balanced foods, exercise, get plenty of rest and get outside often for some fresh air! I think a good multi-vitamin is about all I need to take....when I remember to take it  :D
4+cmm left retromastoid of cerebellopontine angle tumor removed 6/5/06; Dr. Eric Gabriel, St. Vincents, Jacksonville, FL
Left ear hearing loss, left eye gold weight, facial paralysis; 48 year old female. Dr. Khuddas - my hero - corrected my double vision

Static

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Re: supplements?
« Reply #8 on: November 27, 2007, 04:27:15 pm »
Funny you should mention that but when I used to take even a multivitamin, I would get sick way too much and then I stopped.  Don't get sick that much anymore, other than AN bs and headache stuff.  Must be all that good nutrition I'm getting from chocolate  ;D
3.5cm AN removed 1-21-04
CSF leak repaired 5/04
SSD Right

pearchica

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Re: supplements?
« Reply #9 on: December 05, 2007, 06:00:49 pm »
I"ve been taking EmergenC for 2 years now- just had my first cold and got over it quicker.  Also, avoiding cookies and icecream would be a good thing!  Take care, Annie
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys

Pat

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Re: supplements?
« Reply #10 on: December 05, 2007, 06:41:30 pm »
Interesting posts, thought I was a "loner" ie fighting this condition with herbs...........
I`m taking Pau D`Arco , got many folks praying too...........
Really praying I don`t have to have any kind of surgery, had a missionary from Brazil (now in Argentina) tell me this stuff worked for them....................
 Does it work? , don`t know yet, another MRI scheduled 13th of Dec.................
Pau D`Arco available from www.gaiaherbs.com......... red kind , from inner bark,
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"

antoinette

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Re: supplements?
« Reply #11 on: January 21, 2008, 10:50:41 am »
Hi,
I have been a member from the start and from the previous list system of ANAUSA, since 1997.
I was participating daily at that time, but being a Watch&wait my AN having developped unmistakable symptoms since 1990, and although still growing, but so slowly, my ENT and I decided to wait just to see which one will win the game. I had no treatment at all. The AN is now in the cpa, 9mm outside of the Iac, and free to connect with whatever in the brain stem, after having filled the auditory canal to the size of 2cm.2 inside +o.9 outside.
I am still carefull about my diet and mostly try to drink more water. Supplements are a good idea but some have proven to be perhaps a very bad idea if you are waiting wanting to keep the size down.
Many years ago, we had noted ANs to respond to Ginko Biloba with precipited growth. It makes sense as it improves the blood circulation in the brain area, so it improves the feeding of the tumor. We all passed the news along when needed.
This is why I post today.
antoinette

cookiesecond

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Re: supplements?
« Reply #12 on: January 21, 2008, 12:35:47 pm »
Hi Ant,
It has been a long time... How are you doing? I miss the daily dialogue from you guys. It sure helped when I really needed it and I will never forget it.
Take care,
Lynn

jerseygirl

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Re: supplements?
« Reply #13 on: January 21, 2008, 06:49:41 pm »
Antoinette,

I am a heavy long-term user of Ginkgo Biloba. It increases my alertness and reduces/ eliminates tinnitus. I have searched on google on Ginkgo and found that all most recent studies point that Ginkgo has a preventative effect on brain cancers, breast and ovarian tumors. Here is one link : http://explore.georgetown.edu/news/?ID=13079. There are many.

Malignant brain tumors are much more blood fed than benign, like AN. They also grow much quicker, they are more persistent and they kill. So, if Ginkgo was found to decrease the incidence and size of malignant tumors, would it not do the same for benign tumors? Please, let us know where is the study showing that Ginkgo Biloba increases the incidence of AN.

Regards,

                          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.

tony

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Re: supplements?
« Reply #14 on: January 22, 2008, 12:42:49 am »
Antionette you are well !
Best Regards
Tony

 


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