AVM Survivors Network

Antiangiogenesis , Therapies & Diet


George, here is an article about Sirolimus (Rapamune) that you'll find very exciting: http://www.dailymail.co.uk/health/article-2171518/Boy-5-takes-steps-experimental-drug-shrinks-huge-tumour-growing-body.html


Curious about Avastin.


Hi guys , its now one year on from when i first posted this discussion , My daughter Nikki is still having embos and taking Rapamune in between its early days yet to see if it works but generally the drug has been well tolerated , whether it works on AVMs is hard to tell as thr docs tell me there are only 3 people currently trialling this in the world ! . just wanted to kmow if anyone else is having any drugs for AVMs currently or has heard about any advances in this area ?


George, did you connect with ermahampton: http://www.avmsurvivors.org/profile/ermahampton

She is taking Rapamune.

I am taking my son back to Dr. Suen in February for a follow-up scan and a procedure if necessary. (I fear it might be necessary.) I will ask about Rapamune.


Also, in Cincinnati they are currently recruiting participants for a Rapamune trial for complicated vascular anomalies: http://clinicaltrials.gov/show/NCT00975819


Hi Madere thanks for the valuable info as always , sorry to hear that you need to go back for a procedure, is the AVM showing signs of revascularization ?


There is some redness above the eyebrow, but there was redness almost immediately after the surgery; I was expecting it to have faded by now. I won't really know what's going on until the CTA.


I just had a lengthy discussion with a Japanese tea merchant at the local farmer's market, and she told me some information about green tea that may provide some food for thought:

1. With US store brands of green tea such as Bigelow and Lipton, the tea generally comes from China. It is grown with abundant pesticides, and the tea bags are often bleached. Steeping the tea bag in hot water releases the pesticides and bleach into the tea that is drunk. In addition, sometimes lead and other heavy metals have been found in teabag tea sold in the US. (See http://www.consumerlab.com/news/Results%20of%20green%20tea%20produc...).

2. The reason why the tea tastes bitter is because it is old tea. Fresh tea does not have a problem with bitterness. (The sample Japanese teas I tried were delicious and had no trace of bitterness. It was an altogether different and more pleasant drink from what you would generally think of when you think "green tea.") Generally speaking, the lowest grade tea in China is shipped to the US. The Chinese mainly buy Japanese tea for their own consumption.

3. Using a tea bag means that the nutrients (and the health benefits) from the tea are thrown away, rather than consumed. Ground Japanese tea can be added straight to hot or cold water (1/4 teaspoon or so) and drunk; in this manner, you can receive the full benefits of the tea.

Yes, there is sticker shock when you purchase freshly ground Japanese tea, but in this case, I suspect that "you get what you pay for."


Interesting information on green tea, now I’ll be looking for the Japanese loose green tea. It’s funny, I like the the stuff you get at the grocery :slight_smile: so I’ll probably just love it more.