Brain Tumor News!

Note: The comments under each article title are the opinion of our president, Al Musella, DPM,
and do not reflect official policy of the Musella Foundation!
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08/24/20 The dopamine receptor antagonist trifluoperazine prevents phenotype conversion and improves survival in mouse models of glioblastoma        

 This article says that although radiation improves survival for glioblastomas, it also makes the tumor harder to treat. They found that by adding the drug trifluoperazine  (which is approved for psychiatric disorders) at the time of radiation, they were able to preserve the benefit of radiation but stop the conversion that causes the tumor cells to be harder to treat.  In mice, it resulted in longer survivals!    

There is a different clinical trial now of another dopamine receptor antagonist, Onc-201, being tested for H3K27M mutant gliomas. They are testing it during and after radiation, as well as only after. Comparing the 2 may show the effect described in the article- hopefully longer survivals!

08/24/20 Prognostic Value of ABO Blood Groups in Patients with Glioblastoma Multiforme        

 This is fascinating but needs to be confirmed in larger studies.   For patients with Glioblastoma, they found median OS was 22 months in blood group O whereas 14 months in blood group A, 11 months in blood group B and 6 months in blood group AB.    This could be significant when looking at clinical trial data. Blood type is usually not analyzed but it appears to make a larger difference in survival than any treatment ever tested.  

08/23/20 ERC Announces Interim Results from Phase 2 Trial of Immunotherapy ERC1671 (Gliovac) in Recurrent Glioblastoma Patients        

   This is the early results of a phase 2 randomized clinical trial for recurrent glioblastoma, which shows a remarkable improvement compared to historical controls (they do not discuss how the placebo group in the trial dd).    6 month survival rate was 100% in the trial compared to historical 33%. Median overall survival is 46 weeks compared to historical control of 23 weeks. Presumably some of the patients are still alive and the survivals should increase but they are already at double, and this is with a treatment that usually has minimal side effects.  

08/23/20 Ketone-Supressing Drug Combats Rare Brain Cancer in Mice        

This is a scary report.  They found that different tumors behave differently to alterations in levels of alpha-ketoglutarate.   Brainstem gliomas (in mice) benefitted from a treatment that lowers the level of alpha-ketoglutarate. However, low grade gliomas (in mice) did better when they increased the level of alpha-ketoglutarate.   It is great that they found an easy way to influence the speed of growth of tumors, but a lot more research needs to be done to fully understand how it impacts various tumors in people.   IF true, we need to be careful testing the ketogenic diet which increases the levels of alpha-ketoglutarate. It might help some tumors but also might hurt other types.  The methylation of the histones that alpha-ketoglutarate causes may be random, so the effect might not be consistent even in the same tumor types, or over time in the same patient. This definitely deserves more study.

08/23/20 Northwell neurosurgeon first on Long Island to use Modus V™ 3D exoscope to remove brain tumor        

 An exoscope is the next generation of operating microscope. It lets the surgeon better see what he is doing! 

08/17/20 Amazon Smile Fundraiser! Action Required!        

 Please pass this along to your friends and family!  If you already are using it - note that you have to turn it back on in the Amazon app if you use the App.  If you use the website in a browser, you do not have to do anything.

08/17/20 Promising Pathway Act Update.        

 if you haven't sent the message to your representatives yet - please do it now. If for any reason you are opposed to the bill, contact me to discuss it.

08/12/20 Brain Tumor Survey        

This is from our friends at Pinpoint Patient Recruiting.  They will pay you $75 for your time, and give the Musella Foundation a donation!  Let me know if you do it!

07/31/20 New video added: Metastatic Brain Tumors        

 Worth watching for anyone not only dealing with metastatic tumors but any brain tumor as he explains stereotactic radiosurgery and LITT (Laser Interstitial Therapy) which can be used on other types of brain tumors as well!

07/30/20 Once, Twice, Three Times a Finding: Reproducibility of Dendritic Cell Vaccine Trials Targeting Cytomegalovirus in Glioblastoma        

 They report amazing results - about 35% 5 year survival for glioblastoma.  This is the type of treatment that highlights why our Promising Pathway Bill needs to be passed right now. If the bill was in effect, treatments like this would be readily available to you now.  Under the current regulations, this might not get approved for a few more years or possibly never.

07/29/20 OncoSynergy has joined forces with the Musella Foundation For Brain Tumor Research & Information, Inc        

 100% of donation made on the page will go to fund this trial. We need to raise $60,000 to get the  first patient treated then work on raising more to help get the entire trial completed.  We can speed this up by funding it now. 

07/29/20 An Emerging Medical Market Play with Great Opportunity        

An Emerging Medical Market Play with Great Opportunity         This is a paid advertisement (to the Stockhouse newsletter - not to us!)  I usually never would reprint one of these in our brain tumor news blast as they are usually designed to just pump up stock prices, however it mentions an important new technology. This is a new platform that enables drugs to pass through the blood brain barrier.  Could be useful not only for brain cancer but other brain diseases like Alzheimer’s.  Will be keeping an eye on this.

07/28/20 Novocure Announces Recipients of 2nd Annual AACR-Novocure Grants for Tumor Treating Fields Research Program        

 These projects will hopefully find ways to improve Optune! Very worthwhile!

07/28/20 Dianhydrogalactitol (Val-083) synergizes with topoisomerase poisons to overcome DNA repair activity in tumor cells        

 These types of reports bother me because we can't just try them right now.  It seems to make sense, and works in mice but it will be years before most people could try it.  It will unfortunately be too late for most people who currently have a glioblastoma.

However, if our "Promising Pathway Act" was passed, drugs like Val-083 would be approved and easily available, and we could try combining them with a few different topoisomerase drugs, record the outcomes in the registry and quickly learn the best way to use it. This is a much faster pathway to the cure.  We need your help getting it passed. Go to for details and to easily send letters to your congresspeople.

07/24/20 FDA Grants Rare Pediatric Disease Designation to ONC201 for the Treatment of H3 K27M-Mutant Glioma        

 This is a great sign.. This experimental drug, Onc-201 is the first treatment ever that targets diffuse midline glioma and DIPG.  Early results look very good.  Our organization has given them many grants to try to speed up this process, but getting Rare Pediatric Disease Designation, along with Orphan Drug and Fast Track designation will hopefully allow the FDA to approve it sooner rather than later!

07/24/20 Trump administration unveils four executive orders aimed at lowering drug prices        

 I deal with this problem every day. Patients can not afford their medications.  We have been running a copay assistance program to help brain tumor patients get access to their medications. We have awarded grants to patients totaling over $7 million.  However we ran out of money and had to close the program to new patients.  We keep getting calls from desperate patients looking for help with these copayments and right now no programs are open to help them. Many are doing without treatments. Not acceptable.

  The president signed an executive order today that allows us to buy drugs from overseas.  The usual cost for the first prescription of Temodar is usually over $10,000.  In India, that same dosage could cost $100.  This drug went generic years ago but here in the USA it is still expensive.  I doubt if the prices will go down to the levels in India but even the UK charges about $3,000.  Would be great to level the playing field and have all countries that can afford it pay the same rate.  Of course I wouldn't want the poorer countries to have to do without it.

07/22/20 GBM awareness day: Contact your legislators!        

 We need everyone to do this. Ask your entire family to do it as well as your friends and post it to social media!

07/22/20 First Recurrent GBM Patient Enrolled in Novocure’s EF-33 Phase 2 Pilot Trial of Tumor Treating Fields Delivered Utilizing High-Intensity Transducer Arrays        

 This is exciting. Novocure is testing a high intensity version of Optune on recurrent gbm  There are also about 26 clinical trials going on for Optune looking at it's use in other diseases and for glioblastomas combined with radiation, checkpoint inhibitors and other drugs!

07/11/20 Comparative Epidemiology of Gliosarcoma and Glioblastoma and the Impact of Race on Overall Survival: A Systematic Literature Review        
This is similiar to an article I posted a few weeks ago, both show that there is a large discrepancy in both clinical trial participation as well as overall survival by race.    This is not acceptable. We are working on leveling the playing field by collaborating with the Society of Neuro-oncology as well as a group of research and other organizations to remove barriers to participation in clinical trials. 
Our copayment assistance program was a major help in this regard - as a major part of the survival difference is inability to afford treatments - however we ran out of money and our program is closed to new patients. We get calls every day asking for help and right now there are no copay programs open to help people on Temodar.  Many patients are sadly going without it.

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