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Author Topic: NF2 Tumour Suppression  (Read 22758 times)

tony

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Re: NF2 Tumour Suppression
« Reply #15 on: January 14, 2009, 04:52:18 pm »
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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jerseygirl

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Re: NF2 Tumour Suppression
« Reply #16 on: January 14, 2009, 05:50:20 pm »
Tony,

This is incredible! Congtats one more time! Please, please, keep us posted!


                  Eve
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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: NF2 Tumour Suppression
« Reply #17 on: January 14, 2009, 08:42:37 pm »
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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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.

tony

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Re: NF2 Tumour Suppression/trial update
« Reply #18 on: February 13, 2009, 10:34:10 am »
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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jerseygirl

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Re: NF2 Tumour Suppression
« Reply #19 on: February 13, 2009, 11:20:36 am »
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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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: NF2 Tumour Suppression
« Reply #20 on: March 16, 2009, 01:57:19 am »
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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jerseygirl

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Re: NF2 Tumour Suppression
« Reply #21 on: March 16, 2009, 07:11:20 am »
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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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: NF2 Tumour Suppression
« Reply #22 on: March 16, 2009, 08:19:32 am »
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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jerseygirl

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Re: NF2 Tumour Suppression
« Reply #23 on: March 16, 2009, 08:32:59 am »
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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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.

EJTampa

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Re: NF2 Tumour Suppression
« Reply #24 on: March 16, 2009, 09:37:32 am »
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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-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

jerseygirl

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Re: NF2 Tumour Suppression
« Reply #25 on: March 16, 2009, 11:07:07 am »
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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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: NF2 Tumour Suppression
« Reply #26 on: March 16, 2009, 11:53:19 am »
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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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.

tony

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Re: NF2 Tumour Suppression
« Reply #27 on: March 16, 2009, 12:36:44 pm »
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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tony

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Re: NF2 Tumour Suppression
« Reply #28 on: June 03, 2009, 10:25:04 am »
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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russcape

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Re: NF2 Tumour Suppression
« Reply #29 on: June 06, 2009, 04:34:24 pm »
Quote from: tony on March 16, 2009, 12:36:44 pm
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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