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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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02/08/18 Phase II, Open-Label, Randomized, Multicenter Trial (HERBY) of Bevacizumab in Pediatric Patients With Newly Diagnosed High-Grade Glioma.        

 This trial shows why we need to test treatments in kids and not just assume that they will work the same as in adults.  This trial compares the standard of radiation and temodar with and without Avastin,  for newly diagnosed high grade glioma.  In previously reported trials on adults, there was a pretty good increase in progression free survival with just about no increase in overall survival.  In this study with children, they found that adding Avastin decreased both the progression free survival and overall survival, and there were more side effects in the Avastin group.

[Disclosure: Genetech is a sponsor of our organization]

02/03/18 Statement from Jeffrey Shuren, M.D., J.D., director of the FDA’s Center for Devices and Radiological Health on the recent National Toxicology Program draft report on radiofrequency energy exposure        

 The FDA is always conservative when it comes to the health of the public.  Sometimes too conservative.  They report that there is probably no link between cell phone use and cancer.  I tend to agree with them.

02/03/18 H3 K27M-mutant gliomas in adults vs. children share similar histological features and adverse prognosis.        

 This mutation is a bad sign if present.  Most DIPG patients have it, and some GBM patients have it.  Average survival in an adult Glioblastoma is usually less than half as long as those without it.  Luckily, there are a few treatments in the pipeline that target this mutation.   ONC201 is one of them - it is in trials for both adult and pediatric brain tumors with this mutation.  Too early to tell how it will work but I do know of a few people who did well with it.  If you have this mutation but do not fit any of the trials, there may be other ways of getting it. Contact us for help.

02/01/18 Cancer ‘vaccine’ eliminates tumors in mice        

 This is not in brain tumors yet, but this may be the most exciting news in years. This team has previously invented Rituximab, which is one of the most important cancer drugs ever invented, so they have the experience  to do this correctly and quickly..  I am trying to see if we can get it tested on GBMs and/or DIPG.   

02/01/18 Influence of Treatment With Tumor-Treating Fields on Health-Related Quality of Life of Patients With Newly Diagnosed Glioblastoma A Secondary Analysis of a Randomized Clinical Trial        

 JAMA is one of the most respected journals. The  conclusion: Considering the net clinical benefit, our HRQoL (healthcare related quality of life)  data support the addition of TTFields to standard therapy in patients with glioblastoma

02/01/18 BTB Foundation Expands Giving with Academic Scholarship Opportunity (Chicago Area Only)        

 This scholarship is for students in the Chicago area affected by a brain tumor.

01/31/18 Please help Us Better Understand Glioblastoma Multiforme (GBM) Patient Experiences through a short, online survey:        

 I sent this out a few weeks ago.. They need just a few more patients.  

01/31/18 Clinical importance of eflornithine (difluoromethylornithine) for the treatment of malignant gliomas        

 This drug is in clinical trials now  for recurrent anaplastic astrocytoma.   This article reviews all of the data on over 500 patients who took the drug.  Looks best for anaplastic astrocytoma, where there was a big improvement in survival! 

Disclosure: The company that makes this drug is a sponsor of the Musella Foundation

01/31/18 ONC201 Trial Begins at NYU for Children with H3 K27M Mutant Glioma        

 This is an important trial for patients who have this mutation. Check your pathology report for the H3 K27M mutation, or if your child has a DIPG and did not have a biopsy - they most likely have this mutation.

01/30/18 Final results of a phase I dose-escalation, dose-expansion study of adding disulfiram with or without copper to adjuvant temozolomide for newly diagnosed glioblastoma.        

 This sounded like a great idea, but unfortunately it did not pan out in this study.  That is why we can't just go by theory - it has to be tested in trials.


01/29/18 Optune Open House, Santa Anna, CA        

 This is from the people at Novocure. These meetings are a perfect introduction to Optune for brain tumor patients thinking about trying it or those who are using it!


01/28/18 Tiny implant opens way to deliver drugs deep into the brain        

 This may be groundbreaking.. We just need a good drug to use.

01/21/18 Lessons Learned Using a High-definition Three-dimensional Exoscope for Brain Tumor Surgery        

 Very cool video of a new tool for brain tumor surgery. Warning - very graphic.

01/20/18 Cancer remedy draws patients and criticism        

 I know nothing about this specific treatment, but it raises a lot of red flags. They refuse to publish results. This could mean one of 2 possibilities:

The treatment doesn't work - so if they publish results, patients would stop going to them and stop giving them $250,000 a treatment. OR - the treatment does work, and by not sharing the results - they are literally killing thousands of patient a year who could benefit from the treatment, if it really did work.  Either way, not good.

If it really worked on pediatric DIPG, it would be simple to prove, since the standard treatments do not do so well. 

01/17/18 Midatech and UCSF receive IND approval for DIPG treatment MTX110        

 There is a huge unmet need for more treatments of this rare pediatric brain tumor. Glad to see a new clinical trial! I wish them luck.

01/17/18 Help Us Understand Glioblastoma Multiforme (GBM) Patient Experiences better through a quick survey:        

 This is only for patients (and caregivers) where the patient was diagnosed with a GBM in the last 15 months.  If that fits your situation, please take the survey.  You will get $75 for your time, and a donation will be made to the Musella Foundation.  (If you do the survey, let me know).


01/17/18 High-Dose Metformin Plus Temozolomide Shows Increased Anti-tumor Effects in Glioblastoma In Vitro and In Vivo Compared with Monotherapy.        

 Very interesting.  In our virtual trial, we have 10 glioblastoma patients who tried the combination and they did a lot better, on average, than those who took Temozolomide without Metformin.

01/17/18 Long Island resident with recurrent brain cancer receives novel experimental treatment at Lenox Hill Hospital        

 This is an exciting new type of treatment. I will be watching it closely!

01/11/18 Drugs targeting the cells circadian rhythm offers hope for glioblastoma        

This article is a little complicated to follow, but it may lead to a breakthrough. Excellent work.

01/10/18 Dr. Kurt Jaeckle to Lead Phase III Clinical Trial of Novel Drug VAL-083 for Late-Stage Glioblastoma        

 This is a trial for recurrent glioblastoma patients who have failed Temodar and Avastin.  There is another trial of Val-083 for newly diagnosed MGMT unmethylated patients.  Val-083 is a chemotherapy similar  to Temodar but works at a different location on the DNA of the tumor cells.  It should theoretically not be affected by the MGMT status and may work even when the tumor is resistant to Temodar

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