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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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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 virtualtrials.com/oncosynergy 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 https://virtualtrials.com/activism.cfm 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‚Äôs 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.
 



07/09/20 Ziopharm Oncology Doses First DIPG Patient in Phase 1/2 Trial of Controlled IL-12 for the Treatment of Pediatric Brain Tumors        

 This is a fascinating gene therapy that can be controlled by an oral drug - the gene therapy is injected into the tumor and it inserts a gene that when activated by the oral drug produces IL-12, which is an immune enhancer.  The problem is too much IL-12 causes severe problems so there is a need to be able to control it. They use this oral drug to control it and can turn off the gene therapy if needed simply by stopping the oral drug. 

They announced the first use of it in a DIPG patient.  They used it on over 175 other patients with other cancers, mostly glioblastoma, with relatively good results.   I wish them luck!

 




07/08/20 Musella Foundation awards another brain tumor research grant!        

 This grant will be combined with grants from many other charities, and it will allow the onc201 program to reopen soon for a few months. After that we will try to fund it on a month to month basis as long as needed (until FDA approval).




07/07/20 Survival, Costs, and Health Care Resource Use by Line of Therapy in US Medicare Patients With Newly Diagnosed Glioblastoma: A Retrospective Observational Study        

 This is pretty shocking. They looked only at Medicare patients, aged 66 or older with glioblastoma..  and this study covered the years 2007 - 2013 so it doesn't reflect the benefit (and costs) of recent treatments like Optune (as Medicare only approved payments for Optune last year) and GammaTile.

They found that the average survival for GBM was ony 5.9 months for those who had surgery and only 3 months for those that did not have surgery.  The numbers we usually see include young people who do much better.

This underscores the need for us to change the entire system. We have the opportunity to make a major change now but I need your help contacting your legislators (not even asking for donations!) . See virtualtrials.com/activism.cfm     This will make a huge difference and give us 5-10 new treatment options within months after the bill passes. I could see it easily doubling average survival - just by you taking 5 minutes of your time.




07/03/20 Everolimus improves the efficacy of dasatinib in PDGFRa-driven glioma        

 Look at your pathology report to see if you have the PDGFRα mutation...  if so it might be worth considering this combination!  It is early work but they did the research the right way - they came up with a theory, tested it in the lab and in animals, then tried it on a small group of people and it did pretty well.   The Musella Foundation helped support this project through our collaboration with the DIPG Collaborative.




07/03/20 Valganciclovir as Add-on to Standard Therapy in Glioblastoma Patients        

 Impressive gains for a relatively easy treatment. Valganciclovir (Valcyte) is approved for the treatment of cytomegalovirus so it is easily obtainable off label.  Small study and needs to be confirmed but might be worth considering!




07/03/20 Is polio the answer to curing brain tumors?        

 This experimental treatment is available in clinical trials at Duke (North Carolina), UCSF (California) and the University Hospitals (Ohio).




07/01/20 Early Imaging Marker of Progressing Glioblastoma: A Window of Opportunity        

 Interesting concept:  use advanced imaging to find progression faster than the current methods - perhaps early treatment would improve results?  




06/30/20 Musella Foundation awards two more brain tumor research grants!        

Wanted to say a big thank you to Wizathon.com, as well as our many volunteers and participants in the National Walk To End Brain Tumors.  Wizathon helped us turn our live 5k events into virtual events.  They did not do as well as in years past, but did much better than I expected considering the circumstances!

Hopefully things will get back to normal next year!




06/29/20 We need your supprt for the Promising Pathway Act        

I feel that this is the most important bill we have ever came across for brain tumor patients. 

 We need tens of thousands of people to do this to have a chance of a quick passage of this bill. Please pass it along on social media - facebook, twitter and even TikTok!

Contact me if you have questions about this bill!  musella@virtualtrials.com

 




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