New info on statin trails?

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New info on statin trails?

Postby ChrisR » Wed Jul 27, 2011 2:03 pm

My fiance appears to have a large number of tiny, dynamic caveromas in her brainstem, and the most recent bleeder is unreachable. Like many, we're interested to know the status of drug treatment studies. I emailed Dr. Whitehead but haven't received a response. Does anyone know where they are with this? Any news?
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Re: New info on statin trails?

Postby Connie Lee » Wed Jul 27, 2011 10:32 pm

Yes, I just back from a meeting with Leslie Morrison from the University of New Mexico among others. I am not sure what's happening in Utah, but the first pilot testing on humans will be done in New Mexico. They have MRI technology at UNM that allows them to see how leaky cavernous angiomas are. They will be giving people with the Common Hispanic Mutation an MRI, putting them on statins, and then giving them another MRI 3 months later. They thought they would have been able to start and finish this work over the summer, but the National Institute of Health asked for some changes in how they conduct the study, and this delayed the start. They are now looking at starting in the fall.

There is also animal model work continuing with a drug named fasudil and with statins in a number of labs throughout the country. I'm assuming this is also happening in Europe.

I wish this work were progressing more quickly. The hold-up has been in part not knowing what "biomarker" to use. Do statins work if they prevent cavernous angiomas from growing? If they keep more lesions from developing in those with the hereditary form? Or, if they reduce the leakiness of the lesions? If we look at growth and new lesions, these would be long term studies that require many people. Looking at leakiness using this newly available technology should give us a quick indicator with far fewer people.
Connie Lee
President and CEO, Angioma Alliance
17-year-old daughter with CCM3 mutation who has had 4 brain surgeries, T2-L3 spinal fusion
To support Angioma Alliance, visit http://www.Angioma.org/Donate.
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Re: New info on statin trails?

Postby ChrisR » Wed Jul 27, 2011 11:05 pm

Thank you very much for the update. At least there's still some hope for drug treatment in the future. My fiance's seem to be growing, and this is her 2nd bleed in as many years. With many, many tiny lesions discovered in her brainstem any treatment options at all would be a tremendous. I'm sure there are plenty of members here looking forward to the results.
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Re: New info on statin trails?

Postby ChrisR » Wed Aug 24, 2011 6:06 pm

Just to follow up, do you know if any retrospective studies have been done on statins? I assume that at least a percentage of people with CAs have been treated for high cholesterol. A retrospective study was needed before any clinical trials could take place, correct? Did they see positive results?
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Re: New info on statin trails?

Postby josh » Fri Mar 23, 2012 1:04 am

Connie Lee wrote:Yes, I just back from a meeting with Leslie Morrison from the University of New Mexico among others. I am not sure what's happening in Utah, but the first pilot testing on humans will be done in New Mexico. They have MRI technology at UNM that allows them to see how leaky cavernous angiomas are. They will be giving people with the Common Hispanic Mutation an MRI, putting them on statins, and then giving them another MRI 3 months later. They thought they would have been able to start and finish this work over the summer, but the National Institute of Health asked for some changes in how they conduct the study, and this delayed the start. They are now looking at starting in the fall.


Hi Connie, All,

Beyond my fasudil excitement post, statins seem also interesting! Giving the timing here on this thread it seems like we might get some fresh statin intel coming out of this study already? Fall + 3 months = now ?

Please! I need more to be hopeful about here!!! :)

Regards,

Josh
Diagnosed at age 35 after brainstem hemorrhage in December 2010."1.0 x 0.4 x 0.9 cm focal lesion in the anterior aspect of the medulla most consistent with cavernous angioma." MRI in March 2012 shows growth and symptoms worsening (sigh). MRI in Sep 2012 maybe shrinking! New bleed in 2014,CM bigger,recovering OK *meh*
----
The Chronicles of a Rebel Brain http://brainrebel.blogspot.com/
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