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Medication to treat CCM

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There was an article published in Nature Medicine online today that you will be hearing a great deal about:


In the article, researchers at the University of Utah have suggested that statins like Zocor, Lipitor, etc. may be useful in the treatment of CCM, both to reduce hemorrhage and to discourage the development of additional lesions. As I wrote in the newsletter, there are several cautions you should keep in mind:
1.  The drugs have only been tried for treatment of CCM in genetically engineered mice.  There are significant differences between mice and humans. It's not yet known whether they will be effective in humans.  Anyone taking them to treat CCM at this point should be under the supervision of the researcher, Dr. Kevin Whitehead, who is first author on the article.
2.  They would like to enroll individuals in a pilot study to determine whether these medications are indeed effective, so we need potential pilot study enrollees to stay off the medicine until they are enrolled.

The researchers are looking for 50-100 people known to have the hereditary form of CCM for the study. This doesn't mean the medication won't be useful to those with the sporadic form; they are just looking for folks who have multiple lesions for these early tests.  Preferably, they would like individuals who have a relatively active form of the illness - have had multiple hemorrhages or have developed additional lesions. They have not decided whether they will be enrolling children, but they know that they must limit the study to US residents.

If you are interested in participating, please contact either Kevin Whitehead from the University of Utah at kevin.whitehead@hsc.utah.edu or me at info@AngiomaAlliance.org  If you live in New Mexico, please contact Dr. Leslie Morrison at lmorrison@salud.unm.edu  

Dr. Whitehead will be a presenter at the family conference in April.  He will be discussing the pilot study as well as the other implications of his findings - what the research is showing in terms of what may be causing CCM hemorrhage.  I hope you can join us there.

Thanks for all of your help!


Here's an article I spotted that gives a simple explanation:


I've been speaking with the researchers who are working on the statin study about some of the other implications of their work.  As was first discovered by Dr. Awad's research group, they have demonstrated that CCM hemorrhage/lesion development is probably related to inflammation in the blood vessels or to some kind of injury.  In normal blood vessels, the endothelial layer responds to insults and then returns to its normal state.  In CCM, the endothelial layer responds to insult but does not return to its normal state.  The researchers believe statins facilitate the return of the endothelial layer back to its normal state.

The implication here is that there may be some things that anyone can do to reduce their risk of bleeding.  Here are the very basics:  

1.  First and foremost, don't smoke!
2.  Get your flu shot early in the flu season
3.  Stay away from sports that may cause head injury
4.  Minimize situations where you may have limited oxygen (mountain climbing to 10,000-12,000+ ft, SCUBA)
5.  Get plenty of rest, wash your hands frequently, reduce your stress where possible to reduce your vulnerability to infectious diseases.

Obviously, even if you do all of these things, you may still have a bleed or develop more lesions, but I think their findings confirm what so many of you had already noticed.

I may move this thread to a new forum because it is so important, and I don't want to see it sink down the list.  

If you have the genetic form of the illness and are not already on statins, please consider contacting me or Dr. Kevin Whitehead about participating in the study (contact info below).

Why would getting a flu shot be important?

(I've never done it before... It's not common here except for the infirm or aged.)

Well, to be graphic, throwing up puts alot of pressure on your head.  It has been known to give people a bleed.
   Kirk, I am sorry to tell you this, but you kind of qualify under the "infirm"
I see there is new info today. I contacted him yesterday. I just started lipitor a month ago so I think I mite have met the standards. Execpt I just started lipitor. Sounds like I'm out as well.
Quote (libby @ Jan. 20 2009,17:40)
Well, to be graphic, throwing up puts alot of pressure on your head.  It has been known to give people a bleed.
   Kirk, I am sorry to tell you this, but you kind of qualify under the "infirm"

Huh, well, that's a bummer... :-)

Seriously, I'll ask my doctor what he thinks about it. Again, flu shots are not given as much here as in the US.

Flu shots are important to minimize the chance of triggering a cytokine cascade - the type of immune response that CCM endothelial cells have difficulty recovering from.  In other words, it's best not to get sick if one can avoid it.  Influenza is a serious and mostly avoidable illness that would certainly trigger a cytokine cascade.  The researcher believes that this why there may be a seasonal effect for bleeds - they are more likely to happen during autumn/winter when people are more likely to have colds or flu.

And I agree with Libby - for the purposes of a flu shot, you can now be considered infirm.
Topic moved from Support Forum to new Drug Trials forum.
Dear Connie,

This is AMAZING news!  Congratulations to you and all of the physicians and scientists you work with.  I've shared this with one scientist at work to get her input, she does research on her own knock-out mice for breast cancer and knows Dr. Capecchi.  It is incredibly exciting to think that an already FDA approved medication may possibly end up being helpful for our disorder - WOW! And thank you for the advice about flu shots and keeping our immune systems strong - this is exactly the kind of information we all need.

Thank you - thank you!

I mentioned this study to my GP this morning, and he said that statins have a lot of side effects (notable muscle and articular pain). He says he has lots of patients who can't take them. This contrast with the information I saw announcing the study, saying that the medications are commonly used and don't have many side effects.

Not trying to spoil the party, but it's something to be considered. This said, maybe the dosages needed for us would be lower than those needed to lower cholesterol?

Oh for heaven sakes, Kirk, people in the States use statins all the time.  And what side effect is not worth putting up with if it meant fewer permanent bleeds and permanent brain damage.  I mean, really.  
     This is giving a lot of people hope.  
       It is already an approved FDA drug for cholesterol.
     I think it would be fantastic for people to be in the trials.
I certainly agree that it would be great to have a med that will ensure fewer bleeds, but side effects are an issue. I know that plenty of people take them, but my doctor said lots of people just can't deal with the side effects. (I don't personally know anyone who takes them to ask...)

BTW, and slightly off-topic, statins are one of big pharma's biggest scams. Not only is it clear that cholesterol is _not_ such an obvious problem for cardiac health, but they rate high in the abusive test, heavy marketing scale of big pharma's sins. You can read a bit about them here: http://www.westonaprice.org/moderndiseases/statin.html

But, again, if they will help us, with our particular condition, I'm all for it.

Ok, Kirk.  The first statin I was on gave me side effects.  The next statin, which I am still on, gives me no side effects at all.
     I have a call in to my neurologist to find out when my big gleeds stopped (which we have been wondering about, as they have definitely slowed down).  I think it was a little bit after taking the statin, but I am so brain injured, I can't remember.
   My side effect was having trouble going to the bathroom.  That is nothing compared to brain injury.   There are lots of Statins.  I don't know if one was suggested in the article.
They mentioned two of them, but apparently they all have similar effects, though different ones will cause different side effects.

But that article I linked to has something else that's interesting:

"If statins work, they do so by reducing inflammation, not because they lower cholesterol. Statins block the production of mevalonate leading to inhibition of platelet clumping and reduction of inflammation in the artery walls. However, simple changes in the diet can achieve the same effect without also cutting off the body?s vital supply of cholesterol:"


It's true that the article said something about inflammation being the trigger for bleeds. There's been a lot written about "anti-inflammatory diets" (some of it serious, much of it wacky), and I wonder how important this would be for us? I doubt any researchers will be looking into it, as there aren't enough of use around to study (who have had bleeds, at least), but I'm going to do some reading about it. At worst, this diet does have a lot of common sense (avoid refined sugars, polyunsaturated fats, etc.).

Huh, just another bit of synchronicity. The latest issue of Business Week has a cover story about Lipitor:


It seems to be a long analysis of the fact that these drugs don't seem to be as helpful as big pharma wants us to believe...

Kirk - the debate about the cholesterol lowering properties of statins have absolutely nothing to do with their use for CCM.  It is the anti-inflammatory property that is key.  If you'd like to talk about statins for heart disease, could you please move the discussion up to the Old Timers board as it is confusing and off topic here.

This is wonderful news. To think that such a simple and widely available drug may help is great. Also it is good news about the flu jab - I am given the flu jab each year because of my cavernoma, so in the UK at least this seems to be standard practice. However, I think we need to remind ourselves that the effect of statins is likely to be by degrees rather than absolute. I have been on a high dosage of statins for some years because of high cholestorol - the statins have caused me no ill effects and I have controlled my cholesterol levels because of them. Yet in that time I have had a good numbers of 'oozes' from my cavernoma. So it is clear that statins alone will not stop cavernomas in their tracks. But if, statistically, they help (reducing seriousness of bleeds? reducing overall incidence of bleeds in a population?) then this is, as I have said, simply wonderful news.  :D
CCM has made the cover the Nature Medicine, one of the top scientific journals in the world for medical research.  You can see it at:


There are two feature articles - one is by Ben Kleaveland from Mark Kahn's lab at the University of Pennsylvania and the other is by Kevin Whitehead (see the long thread below).

This is a really big deal for visibility in the scientific community and most especially for the potential of making CCM research funding a priority at the US National Institute of Health.  NIH funds almost all the CCM research that has happened, including a few overseas projects.  CCM has come of age!


Even a journal like that can't get the illustration right? What the heck is that illustration supposed to be anyway?

   It says   "   On the cover, a color-enhanced magnetic resonance image of the brain shows multiple congenital malformations of the cerebral vasculature (red). "  I never had a color enhanced MRI.  I have no reason to believe that isn't an accurate picture.
Well, it's not a picture of CCMs... They don't look like that.

I asked Dean Li, the primary investigator about this. He said, "They bought a picture and did not use ours---I have no idea where the malformation is?but I think they liked the colors."

Yea, my thought is that it's more colorful than anything else... Those red bits look kind of like leeches.  :p

I think in the magazine cover picture the little white dots are evidence of prior bleeds and the little red snakey things are the weakened veins/arteries (correct me because I dont know which one) that have the slightly bulging red areas in them.  The bulges I think are the actual cavernomas and if they were magnified more, they would look like blown up bubble gum with a series of small lines in them - almost hair like projections superimposed against a transparent surface.  At least that's what the pictures of mine in my brain look like.
Jan 21 you made a comment about diet and the relationship between anti inflammatory responses in the body.  You questioned, if we could effectively control those responses through diet.  After the stroke I developed Celiac Disease (an auto immune problem that causes all kinds of anti-inflammatory responses).  Interestingly, the solution to controlling Celiac Disease is diet, as a response to the allergice reaction to gluten.  But I have to tell you that I have cut down on my headaches phenomenally and I used to sleep 3-4 hours every afternoon and now I only need an hours sleep and I can get up and go again.   It is early to tell.  I  have only done this a month but I havent had one headache!! This is the healthiest I have been in ages.   The lifestyle eating is called "The Eat Clean Diet" by Tosca Reno  ISBN 10:1-55210-038-3 and the other ISBN number is 13:978-1-55210-038-7.  It is basically fruit, vegtables, meats and healthy trans fats and cutting out sugar....pairing a complex carb and a protein.  I am not hungry, not "dieting" in the sense of cutting back on food....but eating very differently....wisely and in a health conscious way without being fanatical.  It is also full of omega 3's.  I am including this in the public forum simply because I feel like my energy is coming back.  Maybe it is the Celiac Disease under control but the headaches are diminishing and so I offer it as food for thought....smile.  Cheers- Grace  (if I posted this in the wrong place....sorry)
Cavernomas (CAs, or CCMs) are not "bulges" in blood vessels, but are rather clusters of tiny blood vessels, which is why they are often described as looking like raspberries or like pieces of popcorn.

As for diet, it is a question that is worth examining, in my opinion. The problem is that there are so many options it's hard to really pin down what may work. I'm glad yours is working for you; I don't know anything about celiac disease, but your headaches may or may not be related to your CAs, so it's hard to tell.

Wow, thank you for the great news about CCM making the new cover of Nature Medicine, Connie.  Awesome!  Thank you once again for all of your hard work w/the researchers.

And as for diet, I believe strongly that it has a major impact on our health.  Latest book I have discovered which is simply amazing is "Anti Cancer: A Way of Life" by Dr. David Servan-Schreiber - at age 31 he was a physician/neuroscience researcher who was dx'd with a cancerous brain tumor.  I highly recommend his book for anyone who is serious about making important, healthy changes in diet, outlook, etc.  CCM may not be cancer but we all want a strong immune system and now we also want to keep inflammatory responses way down based on the findings from Connie's research team.  This book will be a huge help.

Take care,

I would like to clarify what I said and your response to it...so that we all maintain our credibility here.  We were talking about the picture of the MRI on the cover of Nature Medicine and offering subjective descriptive responses.  Cavernomas on the skin may look like popcorn or "raspberries".  I have those kind on my upper thigh and my ankle.  When I had an angiogram done I watched the dye seep when it hit the brain and in just one place it looked very much like the little bulge in the picture on the cover of Nature Medicine. I imagine there is some variety depending on the degree of magnification and the type of picture....mri, angiogram.... and of course we know some types of measurement do not pick up occult lesions at all. A cavernoma is a weakness in the cell wall, that is what I have been told.  Regarding my comment about headaches, I was trying to provide affirmation that I think you are on target.  There is a relationship between inflammation and diet and cavernomas.  I know there is a relationship between headache and cavernomas because both times I have had a major bleed, it has been associated with a headache.  One of the best things about this site has been learning that other people struggle with the headache thing.  Thanks to all of you who take the time to share so honestly.  You wouldnt believe how much it helps and encourages me to know you are out there.
Hi Ivy!
Can you post the ISBN number off the book?  Then I can order it easily off line.
Grace :)

A cavernoma is not a "weakness in the cell wall". It is a vascular malformation, one that makes a berry or popcorn-like shape, as shown in the picture at the top of this page:


Cavernomas may have weaknesses in the endothelium, which is why they bleed, but that is not how they are formed.


Dear Grace,

Here is the ISBN-10 number: 0670020346

I've learned so much from this book, it really opened up my eyes to the things we should eat and, more importantly, the things we should avoid.  For example, I know now that high fructose corn syrup is really, REALLY bad and that cancer cells really like that stuff, so I will do whatever I can to avoid it.  (I knew that before but for some reason this book brings the message home in a good way that makes a lot of sense.) He talks about changing one's "terrain" -- all different things, not just food -- it's really interesting.  Hope you like it, too!

Take care,

Quote (Ivy @ Feb. 25 2009,18:06)
For example, I know now that high fructose corn syrup is really, REALLY bad and that cancer cells really like that stuff, so I will do whatever I can to avoid it.

Does he offer any proof about this? I mean, cancer rates are actually dropping in recent years, and lots of people got cancers back in the 70s and earlier before high fructose corn syrup was "invented". I'm just saying... I take this things with much skepticism unless I see something that looks like proof.

This said, you don't _need_ high fructose corn syrup; it's just a highly concentrated sugar, and you're better off not consuming too much sugar. The best thing is to drink water instead of soda.

There is quite a bit of data out there about HFCS (high fructose corn syrup) - otherwise known as corn syrup, fructose, dextrose, and "natural" sweeteners.  Everyone should make their own decisions.  HFCS cannot be metabolized normally by our cells so it is converted into fat.  A lot of experts tie the current increase in obesity to consumption of HFCS.  It's found in so many food items nowadays - bread, pasta, ketchup, cakes, pies, cookies, ice cream, etc. - we really have to read food labels carefully.  Before the 1970's most sugar was derived from beet and sugarcane plants.  HFCS is cheaper and more  profitable for agri-business....but at the expense of our health.  I prefer to try to stay away from it as best I can and I don't drink soda either.  (Alas, this is what happens when we are no longer 20 years old and invincible!  I just want to try to stick around on this planet for many more years to come.)  :)

I agree that it contributes to obesity, but I've never seen any suggestion that it causes or promotes cancer.

If you can access articles on PubMed here is info on one good read, some are harder to understand than others.  /Ivy

Journal of Nuclear Medicine Vol. 49 No. Suppl_2 24S-42S
© 2008 by Society of Nuclear Medicine
doi: 10.2967/jnumed.107.047258

Causes and Consequences of Increased Glucose Metabolism of Cancers
Robert J. Gillies, Ian Robey and Robert A. Gatenby
University of Arizona, Tucson, Arizona

In this review we examine the mechanisms (causes) underlying the increased glucose consumption observed in tumors within a teleological context (consequences). In other words, we will ask not only "How do cancers have high glycolysis?" but also, "Why?" We believe that the insights gained from answering the latter question support the conclusion that elevated glucose consumption is a necessary component of carcinogenesis. Specifically we propose that glycolysis is elevated because it produces acid, which provides an evolutionary advantage to cancer cells vis-ą-vis normal parenchyma into which they invade.

Key Words: cancer ? glucose ? metabolism ? carcinogenesis ? acid-base ? somatic evolution
It looks like statin research is the hot topic these days - here is a new press release from Mayo Clinic.  It references statins and vascular conditions in the brain.  How exciting is all of this stuff ?  /Ivy

Statins Lower Stroke Severity, Improve Recovery

Feb 26, 2009 - ROCHESTER, Minn. ? Mayo Clinic researchers have shown that patients who were taking statins before a stroke experienced better outcomes and recovery than patients who weren?t on the drug ? even when their cholesterol levels were ideal. The finding is reported in the current issue of the Journal of Stroke and Cerebrovascular Diseases.

?We were trying to determine if the daily use of statins had more of an impact on stroke patients than simply lowering their ?bad? (low-density lipid) cholesterol,? explains lead researcher Latha Stead, M.D. ?We already knew statin use improved outcomes in general, so we focused on the patients who had optimal LDL levels and found it still had quite significant value.?

Statins or reductase inhibitors are enzymes that are widely used to improve cardiovascular health and, more recently, for certain vascular conditions in the brain. One use has been to lower the level of LDL which can contribute to arterial blockages.

Significance of the Research

Previous researchers had shown a lower death rate and improved function in strokes when people had used statins. The Mayo team found that statin used in this cohort also decreased the severity of the strokes and significantly improved overall outcomes. The researchers say this shows benefits far beyond lowering lipid levels. Researchers think the specific benefits may include plaque stabilization and improved cell function in vascular walls, as well as anti-inflammatory and antioxidant factors. More research is needed to pinpoint the specific benefits.

How it was done

Researchers identified 508 patients who were diagnosed with acute ischemic stroke in the emergency department during the 22 months from March 2004 to December 2005. Among that number, 207 had their lipid levels measured within 15 days either side of the stroke incident ? and had LDL levels at or below 100 mg/dL, which is considered optimal for healthy individuals. Roughly half the cohort of 207 had been taking statins. Researchers also adjusted for age, gender and stroke severity.

Others on the research team were Lekshmi Vaidyanathan, M.B.B.S.; Gautam Kumar, M.B.B.S.; M. Fernanda Bellolio, M.D.; Robert Brown, Jr., M.D.; Smitha Suravaram, M.B.B.S.; Sailaja Enduri, M.B.B.S.; Rachel Gilmore, M.B.B.Ch.; and Wyatt Decker, M.D., all of Mayo Clinic.


To obtain the latest news releases from Mayo Clinic, go to www.mayoclinic.org/news. MayoClinic.com (www.mayoclinic.com) is available as a resource for your health stories. For more on Mayo Clinic research, go to www.mayo.edu.

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