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AVM Survivors Network

Antiangiogenesis , Therapies & Diet


#1

Antiangiogenesis , Does anybody know if certain drug therapies or infact diet can help fight or prevent revascularization, which with blood pressure and hormonal change are 3 of the main issues with AVMs, I have heard that the USA the FDA have approved certain Anti-angiogenic drugs in relation to certain types of cancers.Would be interested to hear in anbody in our community knows about any research being carried out solely for the use in intra- and extracranial AVMs and infact if anybody is taking any of these drugs at present for their AVMS ?.

George


#2

I believe there is some on-going research to try to come up with a possible drug therapy for AVMs by Dr. James Suen. I recently googled new treatments for AVMs and AVM research and came up with a paper he wrote that they have found AVMs are a lot like cancer tumors in as much as they form their own blood supply and so might someday be treatable with antiangiogenesis drugs. A research study also showed that AVMs contain a lot of stem cells and I personally hope that someday AVMs can be cured with stem cells.( I lay awake some nights trying to think up possible cures for AVMs but I'm not a doctor so I hope there are some doctors out there doing research who lose a little sleep once in awhile trying to come up with better treatments, too. : o )


#3

Thanks Kim, Its just so frustrating that even though research is being carried out, nobody really knows when a successful treatment will be available . With the fast pace that medical science is progressing i am positive that one day a cure will be available the million dollar question is when ? My daughter is only 7 so i just pray that something positive is found in her lifetime . She is being treated with onyx for a facial AVM , which is Probably the best available treatment at the moment . Lets keep pushing and pressing the right buttons :)


#4

Hi, George, I am seeing a fair bit of information on minocycline and doxycycline as therapies to inhibit revascularization of AVMs: for example, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2605012/

It seems that some haven taken these antibiotics for two years or more, with moderate side effects reported but nothing too extreme, though I have read that long-term doxycycline may increase the chance of developing Crohn's disease.

Anyway, it might be appropriate for members with inoperable AVMs trying to limit revascularization or hemorrhage to ask their doctors about minocycline or doxycycline.

Also, a member here has reported taking resveratrol supplements (naturally found in grapes and red wine), though I have not yet been able to find any data about its effects on AVMs. (It's hard to sort through the hype.)


#5

I drink a lot of green tea.


#6

..for a reason. One of its components, a substance called epigallocatechin gallate is known since 2001 (EGCG) to inhibit the growth of blood vessels. Since that publication many further tests followed, now the molecular mechanisms are well known. Wikipedia is low on information about it, you will only find the interesting information in the context of malginancies.

Previous studies have claimed the anti angiogeneic effect of EGCG is comparable to beavicumab aka avastin, a drug used in tumor diseases (can't find article :-( ).

Strikingly not even Bevazicumab has been considered as medication against AVM. Everything google gives me is a post on this forum ;-)


#7

sorry I misspelled the name of the drug and the link had a typo as well. It's Bevacizumab and the correct wiki article is here http://en.wikipedia.org/wiki/Bevacizumab


#8

there is loads of stuff on Bevacizumab (Avastin) use in Hereditary Hemorrhagic Telangiectasis (HHT) http://www.ncbi.nlm.nih.gov/pubmed?term=bevacizumab%20vascular%20ma...

And the following might be of high interest for everybody with brain AVM. They basically show that Bevacizumab works against it in mice..

Bevacizumab Attenuates VEGF-Induced Angiogenesis and Vascular Malfo...

CONCLUSIONS:
We provide proof-of-principle that, once abnormal AVM vessels have formed, VEGF antagonism may reduce the number of dysplastic vessels and should be evaluated further as a therapeutic strategy for the human disease.


#9
...this is the first report of an approach to medical
therapy in a disorder (brain AVM) that is currently treatable only by
surgical ablation, either by excision, irradiation, or
embolization.

I think everybody with bAVM should be aware of this.


#10

lakersfan, here is an article suggesting there may be increased bleeding for brain AVMs from Avastin therapy: http://journals.lww.com/jto/Fulltext/2009/02000/Rupture_of_a_Cerebral_Arteriovenous_Malformation.21.aspx

It is a single case study, which makes the sweeping conclusions somewhat problematic, but it makes me want to dig further to find out the possible pros and cons of Avastin.


#11

Here's more: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3218160/


#12

http://stroke.ahajournals.org/content/43/7/1925.long states Bevacizumab (Avastin(R) ) works in a mouse model of brain arteriovenous malformaions (bAVM). I has been shown histologically that

* it passes the blood-brain barrier,
* localizes on bAVM endothelium and
* significantly decreases blood vessels in bAVM tissue.

No clinical success is promised. It's just the first step of a long process and I am happy somebody has done it.
This finding is very exciting and promising. Previously such anti angiogenesis tests were not performed on an AVM model (only human carcinoma cell lines etc) and this was only published this month. We should all be aware of this and share it as much as we can.

I second your opinion on the report of single off-label use of Bevacizumab (Avastin(R) ). It's not representative.


#13

Hi,I have a extreme AVM in my face with a very rapid growth and many episodes of bleeding. For years I tried various antiangiogenic drugs. My first drug was dioxicicline for 2 years, prescribed me Dr. Mulliken at Children's Hospital of Boston. At that time they made a trial with marimostat but I could not go on because I am not U.S. citizen. The dioxiciclina not produce me any results. Then I tried talidomide + celebrex. When I took this drug seems that the bleeding stopped, but had to stop treatment because thalidomide caused me a neuropathy . Then I wanted to give Avastin (Benzacizumab) but I was told I had a long time in blood and if I needed surgery I would have problems. Then I tried with two special antiangiogenic cancer called everolimus and sunitinib. These drugs seem to work fine, but I produced many bleeds because they broke me my veins. I was also trying out a season with propranolol because a study in France was indicated for treatment for hemangiomas. No results. Now I have no solution. I have decided to remove all my mav and am waiting for a face transplant candidate. In last time I red about rapamicida trials


#14

Hi Guys , My 7 year old daughter is currently on rapamucine (anti-angiogenic) trials to try to slow down her AVM, its early days yet, (only two weeks) But i will keep you all informed, Think its important for us to start a database of all drugs that have been trialed and their success or failures . Anybody volunteering ??

George


#15

George, what if we started a sub-group for Possible Drug Therapies for AVMs and asked members to report the drugs they were trying, the side effects, and the benefits they experienced? If you start it, George, you could make a list of drugs and articles about them at the top the same way you made a list of doctors on the UK group. (I love that you did that, by the way.) Then we could have discussions and comments about the drugs the same way we do in every other group. Might want to put a disclaimer on the group as well that no drug should be taken without the approval and oversight of your doctor. What do you think?


#16

Hi Dancermom, I will start a discussion and then get a credible list together. Your help rallying the troops will be more than welcome :)


#17

I am now in the process of getting a prescription for Avastin (R) (Bevacizumab). Will update here and on the new thread (thanks for the efforts!) about the process once there is something to report.


#18

I hope Avastin is beneficial for you, lakersfan, and that you experience minimal or no side effects. We're rooting for you!


#19

I am optimistic because I am otherwise entirely healthy and don't take any other drugs.
I don't like this: http://en.wikipedia.org/wiki/Bevacizumab#Drug_administration it says it's administered intravenously every 14 days usually. The mice in the UCSF survey received a dose every other day.


#20

Good luck hope all goes well,I will also keep you updated on Nicole’s Rapamune trial .