Clinical Trials for AN and recurrent AN

[free2be]

Just FYI:

Patients must have a histologically or cytologically confirmed advanced or recurrent solid tumor or lymphoma for which standard curative or palliative measures do not exist or are no longer effective. Patients who have recurrent disease after previous surgery, radiation therapy, and/or chemotherapy are eligible. No restriction is placed on the number of prior therapies.
http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=655863&version=HealthProfessional&protocolsearchid=8192557
 
In a National Institutes of Health (NIH)-funded project titled “Molecular Mechanisms of Vestibular Schwannoma Formation,” D. Bradley Welling, MD, PhD, Long-Sheng Chang, PhD, and Samson Jacob, PhD, are collaborating to find new treatment options for vestibular schwannomas in conjunction with Ching-Shih Chen, PhD. They are working with two new compounds that have been found effective against schwannomas and are showing positive effects in xenograft models.
http://medicalcenter.osu.edu/research/department/otolaryngology/Pages/index.aspx
 
http://www.childlab.org/medical-professional-publications/cross-campus-collaboration?contentId=61803&orgId=20014
 
Intraarterial Cerebral Infusion of Avastin for Vestibular Schwannoma (Acoustic Neuroma)
http://clinicaltrialsfeeds.org/clinical-trials/show/NCT01083966
 
Bevacizumab in Treating Patients With Recurrent or Progressive Meningiomas
http://clinicaltrialsfeeds.org/clinical-trials/show/NCT01125046
 
A Study of Nilotinib in Growing Vestibular Schwannomas
http://clinicaltrialsfeeds.org/clinical-trials/show/NCT01201538
 
http://clinicaltrialsfeeds.org/clinical-trials/results/term=Schwannoma
Complete list based on my search*

*There may be more available.
 

[annamaria]

Thanks. Keep this kind of information on possible advancements coming. Let's do what we can as a community to make sure that the medical research continues ...

Annamaria

[leapyrtwins]

So, can anyone explain this study in English?  As opposed to medical speak.

For instance, what does "new compounds" mean 

I'm not sure how relevant this is to most of us as AN patients, but if someone can tell me what it means, I may be able to determine that 

Thanks,

Jan

[annamaria]

Jan,

actually there are several studies included in the list.  Some deal with studying new chemo products (that have been used for different type of cancers) to see if these could be useful for AN and/or meningioma. Another deals with incomplete removal followed by radiation ... it's applicable!

Annamaria

[leapyrtwins]

Thanks, Annamaria.

Am fairly sure I wouldn't have elected using a chemo product for my AN - if that was an option at the time.

Surgery wasn't bad at all - after the first couple of days of recovery - I'd do it again in a heartbeat (and hopefully I won't ever have to).

I think debulking (partial removal followed by radiation) is a great solution - not that I'm a doctor or anything - I think it has a lot of potential for the future.

Jan

[free2be]

In its common use, the term chemotherapy refers to drugs for treating cancer. However, the larger definition of chemotherapy is:
"the use of chemical agents in the treatment or control of disease or mental illness."

Hence, any drug (chemical agent) used to treat any disease is really chemotherapy. It doesn't have to mean that you'll be poisoned by terribly aggressive drugs.

In fact, the one study mentioned here from Ohio and childlab uses a drug that is very much the same as Celebrex without the COX-2 inhibitors. "OSU-03012 is a recently licensed (AR-12; Arno Therapeutics, Inc.) novel derivative of the cyclooxygenase-2 (COX-2) inhibitor celecoxib (Celebrexâ„¢), but devoid of COX-2 inhibitory activity." http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2692816/. I consider, the herb, that is now being sold as a drug, Boswellia, that I am taking to be chemotherapy. No noted side effects.
Celebrex itself has also been used in research on benign brain tumors.

Connie

[rm516]

Thanks for sharing links and the progress ( new trial medicine)
Concentration and Activity of Lapatinib in Vestibular Schwannomas is interesting with big names Collaborators:
 GlaxoSmithKline
New York University
Ohio State University
House Ear Institute
http://clinicaltrials.gov/ct2/show/NCT00863122
http://neuro-oncology.oxfordjournals.org/content/early/2010/02/11/neuonc.noq012.short

[annamaria]

Folks,

In the end, AN is currently assumed to be originating from a (chemical) shortcoming on Chromosone 22. In 1-, 5-, 10-, or 20 years, the cure for AN will be via a chemical mechanism (chemo) that kills the bad cells that a damaged chromosone 22 is not able to keep in check ... that is the wave of the future... we in the community need to support that ultimate approach ... surgery is crude, but ok (JUST FOR) now...

Annamaria

[ppearl214]

In the end, AN is currently assumed to be originating from a (chemical) shortcoming on Chromosone 22.

Annamaria, this is applicable for NF2 (genetic, bilateral AN's and more growths) only as of now... no confirmed medical proof for unilateral AN's, only NF2. Hope this helps!
Phyl

[annamaria]

Thank you.

I assume this forum is for all types of ANs, and any advances in the field are of interest to the community. Hence, I commend the original info in this thread, which may be of value to a large group of people here, not just those who got surgery.  Keep this info coming: we are interested in it!

Obviously ANs/menigiomas/etc. are gene/DNA/chromosonal issues ... the long-term solution will be to identify which mutaitions are problematic and finding ways of mitigating such mutations and/or finding approach vectors that can pin-point AN/meningioma cells for chemo cell apoptosis.

Annamaria

[leapyrtwins]

Connie, thanks for the clarification on chemo drugs.

As silly as this may sound, I'm still an old-fashioned surgery type of gal. 

Drugs have never been my preference - even "drugs" as minor as Tylenol. 

I've never second-guessed my decision to have surgery.  I'm happy with it and satisfied that I had the best possible outcome.

However, I can understand how these studies may be helpful for those ANers who come after us.

Jan

[chelsmom]

Connie,

Thank you for posting the information and links.  We all wish that our treatment choice, surgery or radiation, will be the solution to our AN's but there are some that have had regrowth even after going through both options.  My daughter had a 2 stage surgery to remove 70-75% for her large AN followed by radiation in 2006.  She was 17 years old.  In 2009 she had a significant regrowth and had to have another surgery that has left her with facial paralysis.  Her surgeons have told us that at this point surgery is the only way to control this aggressive AN since she cannot have anymore radiation for at least 10 years.  Although drugs (chemo) are not something that I want her to ever have to consider, I am glad to see that there might be another option if she has to make a choice again.  Hopefully one she will never need.

Michelle     

[free2be]

I'm glad to post whatever information I find that might help someone now or later. Not everything will be applicable to everyone and maybe to no one, but sharing information and advances is important. At least that is my opinion. Unfortunately, some people (like your daughter, Michelle), may need to find other options to explore. I hope that does not become the case for her, but knowledge is power!

Connie

[cakulmom]

All monies given to research in brain tumors is so important.  When they learn how to treat the DNA of our tumors, they unlock the key to making cancer a treatable disease.  Encourage your friends to donate to those organizations who support research.  We are proud supporters of the American Brain Tumor Association: www.abta.org.

[ppearl214]

All monies given to research in brain tumors is so important.  When they learn how to treat the DNA of our tumors, they unlock the key to making cancer a treatable disease.  Encourage your friends to donate to those organizations who support research.  We are proud supporters of the American Brain Tumor Association: www.abta.org.

.. and for the National Brain Tumor Society (and their upcoming Bike Rides)... as well as the ANA...

Phyl