Research lab

[joanna_an]

Hi all,

What would everyone think about opening a new research lab to find a way to combat this tumor only by taking medicine? Apparently both radiation and surgery are not great alternatives..
I wish I was in the US tho.. I am in Australia but if anyone knows how we can get this started..
I assume we first need to find out some good researchers willing to pursue this for us.. They should write a plan and the financial implications of it and then we could go ahead and find bodies to fund this.. I am willing to participate in this.. don't know if I can do it alone.. I will try to find some researchers down under.. We can't just sit here and whinge.. We need to do something..

Joanna.

[arizonajack]

You might want to do some creative googling.

I seem to recall an article somewhere about just that kind of research already going on but I can't place it.

[Trippy]

I went through the same thing when I was first diagnosed.  I was terribly disappointed in having to decide between surgery/radiosurgery/waiting.  There are some labs doing research on drugs for these kinds of tumors.  I believe Ohio State is working on something.  There was another doctor who tried chemo drugs with some results.  I have combed through a bunch of articles on pubmed to see if there was anything better coming on the horizon, sadly there doesn't seem to be anything, hopefully I'm wrong.  There is research but nothing truly promising in the kind of time frame that matters to us.

Unfortunately our condition is rather rare, it does not get nearly the attention that cancer gets (which it should) or the money.  Although it seems possible that some of the knowledge from cancer research can crossover to AN's. 

Even if we were to wake up tommorow and there was a medical cure on the news it would take years to get through the FDA and to your doctor's prescription pad.

I hate being a Debbie Downer, but I don't know if anything medically will happen soon and it may be better focusing your effort into figuring out if you want to wait, radio, or cut.  Again I hope I am wrong and I would be ecstatic to have someone prove me wrong.   

[Jim Scott]

Even if we were to wake up tomorrow and there was a medical cure on the news it would take years to get through the FDA and to your doctor's prescription pad.  I hate being a Debbie Downer, but I don't know if anything medically will happen soon and it may be better focusing your effort into figuring out if you want to wait, radio, or cut.  Again I hope I am wrong and I would be ecstatic to have someone prove me wrong.

Agreed.  We look forward to medical breakthroughs in AN treatment beyond surgery and radiation but we have to live in the present and that means making treatment decisions that can include radiation (and what type) or surgery.  While surgery and/or radiation are not pleasant to contemplate, they are usually effective.  However, the risks can be intimidating, if we allow them to be.   

Jim

[joanna_an]

After posting I found this link in the watch and wait section.. It was posted by hruss:
http://www.bio30.com/Research/maruta-research.html

It's worth trying.. It's just propolis, can't hurt..
I remember my mum always feeding propolis to me when I was at home plus other supplements.. Left home 7 years ago and took none since then.. Probably that's when my AN started growing..

[arizonajack]

After posting I found this link in the watch and wait section.. It was posted by hruss:
http://www.bio30.com/Research/maruta-research.html

It's worth trying.. It's just propolis, can't hurt..
I remember my mum always feeding propolis to me when I was at home plus other supplements.. Left home 7 years ago and took none since then.. Probably that's when my AN started growing..

Given the proliferation and cost of that stuff, I'm smelling a bit of snake oil. 

[joanna_an]

There is a discussion here:
http://www.inspire.com/groups/neurofibromatosis-network/discussion/propolis-and-bio-30/

Apparently the dr published a study but I haven't read it..

[leapyrtwins]

What would everyone think about opening a new research lab to find a way to combat this tumor only by taking medicine? Apparently both radiation and surgery are not great alternatives..

First and foremost, there is no way to "combat this tumor only by taking medicine".  It's not that easy.  If it were, those of us with ANs wouldn't have opted for radiation and/or surgery.

Second, I respectfully disagree that "both radiation and surgery are not great alternatives".  As one who had surgery, in 2007, I can honestly say it was a great alternative for me.  And I don't think I'm alone in this.

There are also numerous people who had radiation and feel the same way.

Best,

Jan

[New girl]

Hopefully someday there will be a medicine that can take the place of radiation and surgery.  I am looking forward to it!

[joanna_an]

This is an interesting read:
http://www.anarchive.org/nonallopathic.htm

While I am a scientist writing my PhD at the moment.. When it comes to the human body there is no exact science and what works for one might not work for another and vice-versa.. But I wouldn't say there will never be a medicine that will combat this thing somewhere in the future.. Hopefully in my lifetime..