Replies to This Discussion

Permalink Reply by luiscc on December 9, 2010 at 11:00am

Hi Sandra:

I have a high flow AVM in the mouth and face. For years I have participated in several studies on drugs to stop the process called angiogenesis in the avm. I started on 2002 when from the Children's Hospital of Boston; they could not enter me on the study phase of a drug called marimostat. Then they prescribed me a simple drug called dioxiciclina, that any studies indicated that growth could slow avm. I took it during 2 years without noticing any effect. After I started taking talidomide and I think that this drug was working but I had to leave because I was a very bad side effects (neuropathy). Then I tried to drugs developed specifically for cancer such as sunitinib and sorafenib but I had to leave because they caused me dangerous sores in my mouth. Since then, the doctors recommended me that a possibility in my case could be Avastin, but the problem is that Avastin has a life in body of about six months. If there are any problems during this time and I need an urgent operation, it is very likely to cause heavy bleeding that Avastin extremely difficult surgery. Avastin is a chance I do not discard in the future. Then I took propranolol, there are many entries in internet about their effect on hemangiomas, but the AVM is untested. Right, now I'm taking everolimus. In the last ISSVA presented a clinical trials treatment with everolimus and seems to work. Please continue to report your progress. We are all waiting for a drug that can stop the avm.

Permalink Reply by Eric Spring on December 30, 2010 at 4:08pm

my doc did mention they were working on a new drug for brain AVM's but didn't say which one it was.  He suggested I don't use the drug anyway.  Maybe this was it? Sorry I'm not much of a help

Permalink Reply by Chris Safford on January 9, 2011 at 2:32pm

Hi Sandra!  How does the dr give this medication?  In my drug book, it says that it is an IV drug.  I can't imagine putting an IV into the brain.  Most drugs won't cross the blood-brain"  barrier.  It's like what goes into the body below the neck, stays there.  Again my neurosurgeon told me "No Treatment"!  So I wish you good luck with this.

Permalink Reply by Sandra on February 3, 2011 at 9:28am

As I posted in my discussions, finally after 2 months I was able to confirm via Angio, that my AVM did not come back.  What the MRI's where showing is Radiation Necrosis which is an unfortunate side effect of the Radiation treatment I had back in 04.  My Dr. has been using Avastin for Radiation Necrosis for the past 6 years and has good sucess for this condition.  In regards to using this drug for AVM's he confirmed that it is still in the experimental phase.

So I will be starting my Avastin treatments for my Necrosis next Friday.  They said they will be starting me off on very low dosage to see how my body reacts to it.  I have 3 treatments scheduled and will have a followup MRI in 10 weeks to see check my progress.  The possible effects of this Avastin are scary and I really hope Im not trading in one problem for another but unfortunatly there are not alot of treatment options out there for Radiation Necrosis outside of brain surgery which according to my Dr.'s is not an option for me.

 

 

Permalink Reply by mothers son on October 27, 2011 at 2:58pm

Hi Sandra,

I know it has been a few months since you last posted about Avistan. My mother had gamma on her right occipital lobe one year ago. She had seizures and was in the hospital a few weeks back. She had lots of swelling in the area and has also been diagnosed with radiation necrosis. She is currently on more steroids but they want to cut back on them and try Pentoxifylline (Trental) and Vitamin E. They are also considering Avistan for her. I was wondering how your results were with Avistan. I hope all is well and any feedback/advise would be greatly appreciated.

Thanks!

Permalink Reply by Teddi on April 27, 2012 at 7:00pm

I"m not sure how true this is, but I was told that there was a risk of bleeding with this medication.

I am so very sorry to read that your AVM came back, were you aware that that was a possibility with radiation?

My AVM is on my brain stem, there's really nothing that can be done unless I have a massive bleed where more than one artery is involved. Short of that, I'm treated symptomatically, and take life day, by day.

I hope all works out. Please keep me in mind if you need to talk.

Teddi