ANA Discussion Forum
General Category => NF2 => Topic started by: tony on September 01, 2008, 09:11:35 am
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Unreal - no known cure
and suddenly there are seemingly new options every week
Anyhow, early (Human tissue in mice - Lab) results are seeming to show
postive shrinkage of the NF2 type tumours
- this as a result of Propolis Extract in liquid form (Bio 30 is one brand - but there seem to be more)
If you check the link below it gives full details - Utah NF2 meeting 2007
homepage2.nifty.com/daikon_tom/nfj/nfj_2007_06.htm
The really good news : its an existing healthcare type remedy
- already on the market
Best Wishes to all
Tony
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Very encouraging news, Tony.
Thanks for passing on this information.
Jan
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Tony- have your tried or are you currently trying bio 30? I have been on the NF2 forum and some people are now trying it. I havent really heard from anybody whom has been on it for awhile. It is a fairly new thing and it is hard to tell how well it works when MRI's happen so often and since most tumors are slow growing. It does look show good results. I'm happy to see there are new trials going on and that we are...although not quite there yet but getting closer to treatments.
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I am going to give it a shot
- hardly expensive, and if it puts a surgery back by 5 yrs or more
...worth its weight in oil ?
best regards
Tony
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Give it a shot yes...I agree. Make sure you visit the NF2 crew website and look up bio 30. They have a link where it is from New Zeland (the best and most potent bio 30) website where you can get a discount if you tell them you are apart of the NF2 crew & part of the drs trials or something
Check it out and check out the message board there too.
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OK - long story
Yes there is a trial in USA - about 30 of the crew currently on
Too early to say yet - good or bad
The reports author has been in touch and asked if I want to join in - I just might
In terms of product
Bio 30 is one brand - Manuka Health - there are others made in other ways
Its unclear to me if any water based New Zealand sourced product
would work as well - USA product might not
as the original fauna and flora (plants etc) are different
so the honey/propolis type is different also
We live in interesting times ?
Best regards
Tony
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Tony you should give the trial a try...what does it hurt?
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So, yes I am going for the trial
I plan to pep it a bit
early days here - but - there is now evidence that the natural ingrediants
found in freash fruit and veg help supress the condition
NF2crew (USA) confirm some success with strict "good" food diets
Basically it seems to help the body counter the condition
I will with the trial, and go for the freash food option too
So we have surgical, radiological and now chemical/biological options too ?
Best Regards
Tony
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Tony: great news buddy. Good vibes going out to you. I wish you well !
Always good thoughts, Nancy
ps: how's that T3 coming along ? I'm 9 1/2 months out & folks at work have been telling me 'the old Nancy is coming back.'
I think it'll be about 1 year to really see the great results !
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The "good food" diet makes a lot of sense to me, a healthy body is the most likely to minimize the impact of the NF2. I don't know about the propolis extract, and they may have trouble validating it if all the testers are also eating "good food" diets - was it the propolis or the food? But if either or both work, you win, and good health is always a good thing, so you can't lose.
Steve
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Yes I am no bio-chemist
basically the propolis is CAPE rich (which is good at supressing cancer growth in lab tests
and the same anti-PAK1 mechanism appears to work for NF2 as well)
yet the CAPE also exists in lower concentrations in fruits and veg
The only issue for me in terms of the supplement approach - is how
well does the human gut digest such supplements ?
- vitamen supplements are quite poor in this respect
It seems prudent to cover all the angles ?
If the above is all true - then it has serious implications for modern
western society - and town folk generally
Basically a same-day-picked-and-eaten apple
has 10x the CAPE content as the same crop 3-4 weeks later
So by freash - I really do mean TODAY
not a usual supermarket definition (not in UK anyway)
In other words the more "industrialised" the process,
the more time to market - the less effective it will be
So at a time when there are more cancer promoting substances
in the environment - as a result of greater indusrtial process
- our food is even less able to assist us to repair the damage
Hmmm.....project that forward a 100 yrs.
Anyway on a brighter note my face has settled down
and I am considering one more tweak !
Best Regards
Tony
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Yes I am new to this site and newly diagnosed, but if all of this is true and this stuff truely does work where do I sign up. I have over 20 tumors..... I'm trying to be a part of a study right now at NINDS but waiting for a reply. What is this other site you all belong to...NF2 Crew??? This really interests me because this case of NF2 started with me. No other known case in my family.
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Yes NF2Crew link directly to the trials
- much of the earlier work was done in conjunction with them
- and many of them are trial members
Sorry to get personel here, a thousand applogies....
The Bio 30 is unwise if you are "with child"
Its unproven of course - but it could prevent
a natural and full development in the unborn
it is in theory, a natural Angiogenesis inhibitor
If you recall so was Thalidomide (birth defects etc etc)
So best for grown ups - who dont plan any more growing ?
If you need extra links to the info
let me know
Best Regards
Tony
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Just to update I now have a shrinking tumour
- I have been on the Bio 30 just a month so most likely due to
earlier radiotherapy treatments. That said, I am not complaining !
I will continue with the Bio to sort out the the critters (!?!)
I am begining to see the light here
Best Regards
Tony
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This is awesome, Tony! Congratulations! What kind of tumors are these - spinal? Anyhow, this is great and gives all of us hope.
Eve
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The confirmed shrinking tumour is right side AN
(the "good side" , so it is important)
The rest are spinal - but much smaller - I guess we find out if
the bio has got them too in about 10mths ?
You realise if all this works
- we have re-written the medical text books....
Best Regards
Tony
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Tony,
This is incredible! Congtats one more time! Please, please, keep us posted!
Eve
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Wonderful news, Tony, glad to hear it. Whatever you are doing, keep doing it! I am happy to hear of something going right for a change.
Steve
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I have attached a summary of the ongoing Bio 30 trial for NF2 suppression
These based on patients entries
Stable at 12 mths/ ie no growth 4 10%
Stable at 6 mths/ ie no growth 8 20%
was fast growth but now slowed/stabilised 2 4%
Stable, but might be due to radiation treatment 2 4%
no longer taking/unwell/cant take easily 4 8%
Issues with medication/headaches-/stomach 4 8%
don’t know/ MRI due later on 3 6%
too early to say (under 5 mths) 4 8%
slight growth 6 12%
already very sick, no real change 1 2%
So good "early" signs
Time will tell
Best Regards
Tony
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Very encouraging! Thank you, Tony, for making an effort to post it. Please, keep doing it! Hope all is well.
Eve
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Unreal, you wait 3 yrs for an NF2 cure
the suddenly they come along in threes !
So latest news
Alvastin (basically a cancer drug)
has been trialled for NF2 - report as below
On the clinical trials front, Dr. Emannuelle di Tomaso (Harvard Medical School/ Massachusetts General Hospital) presented exciting preliminary results from an NF2 clinical trial on 6 patients demonstrating potential efficacy of the drug Avastin. The drug caused some shrinking NF2 vestibular schwannomas in all patients, and in five patients
some audio improvement"
This is very good news - note that the Bio30 in theory works the same way
- so there is method in the madness ?
Best Regards
Tony
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Tony,
Whatever shrinks those NF2 tumors is more than welcome. It will save more than one life and will give many others hope. I was just wondering though about side effects and potential length of treatment of Avastin vs. Bio30. My understanding is that Avastin has some serious side effects, so its administration over long term is problematic, assuming NF2ers have to take it for life. Plus I don't think anybody took it this long. How about BIO30? Any side effects? It probably costs less, too.
Eve
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Yes - as you say how long etc ?
The bio seems to give headaches (to a few) in strong doses
and no-one much likes the taste etc
but thats about it for now
However given the nature of NF2 it may be that in both cases
you dont need to be on it all the time (say 9mths out of twelve)
(and given the difference between NF2 and cancer - you may not need
the same level of dosage ?)
Time will tell ?
Best Regards
Tony
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Great points! I can't wait for further updates. Regarding headaches: while no fun but I doubt there are anything like the ones some of us has experienced post-surgery and the ones that are an event in itself and completely ruin quality of life.
Eve
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I have to wonder if this would have the same effect on an AN that is not related to NF2? If so, it seems like this could be a way to keep growth at bay for those diagnosed with small tumors, perhaps enough to eliminate the need for radiation or surgery all together. This is great stuff!
Ernie
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Ernie,
I was wondering the same thing. Many but not all ANs, to my knowledge, have NF2 mutations. The mutations seem to be only in the tumor itself, not anywhere else. In contrast, a full blown NF2 case has mutations in every cell of the body where they actually find it by doing genetic testing. Will any of these meds work when mutations are so limited or will they do an overall harm to the body while shrinking AN? I don't think there is any answer to that but I can't help wondering.
Eve
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Avastin is a pretty interesting drug, and a pretty powerful one. Here is the Wikipedia entry for it: http://en.wikipedia.org/wiki/Avastin
The technical name is Bevacizumab, which no one can pronounce. :)
It is a monoclonal antibody that inhibits formation of new blood vessels, and is used to treat a variety of cancers, and apparently also for macular degeneration of the eye, among other things. It is not specific for NF2 or acoustic neuromas. The side effects have mostly to do with inhibiting the formation of good blood vessels, so using it is a balancing act.
I suspect it would be considered too risky for holding a simple acoustic neuroma in check, but it sounds promising for NF2. In time, the technology may produce refined versions that are more specific, with fewer side effects, that can be used for a wider range of conditions. Progress is being made!
Steve
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Unproven for sure - but even conventional ANs need a blood supply
(and those that outgrow the supply are said to die as a consequence)
- so a mild "new blood vessel supressor" may make sense ?
Equally anything that thins the blood or assists new growth
is best avoided ?
Yours
Doc Mc Coy....
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Further results in on the Bio 30 trial (unoffical)
Still looking quite good
We have 4 patients no growth 24mths
We have 9 patients no growth 12mths
We have 12 patients - just too soon to say
1 patient showing (very) small shrinkage
7-8 have dropped off the trial
8 showing slight growth
Now with NF2 12-18mths "no growth" is not unusual
but 24mths no growth is rather rare
fingers crossed
Best regards
Tony
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Unproven for sure - but even conventional ANs need a blood supply
(and those that outgrow the supply are said to die as a consequence)
- so a mild "new blood vessel supressor" may make sense ?
Equally anything that thins the blood or assists new growth
is best avoided ?
Yours
Doc Mc Coy....
"those that outgrow the supply are said to die as a consequence"
I think possibly we may see a cyst develop at this point, or a central necrosis with growth on the exterior. Problem is, new capillaries seek out ways... - Bones : )
B
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Yes - the tumour necrosis sometimes seen
(when not due to radio/surgical intervention)
is often said to be due to the tumour "out growing the blood supply"
About 5% (ish ?) of all ANs go this way ?
- explains to some degree "watch and wait"
since its just possible the thing will self destruct ?
I think the normal ANs (rather than NF2 Type)
are more likely to stay "dead"
- the restarts from NF2 at 3, 5, or even 7 yrs later
are medical legend
Best Regards
Tony
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I started the Bio30 also, capsule and liquid, nasty tasting stuff! But like you said, it aint gonna hurt to try.