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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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11/19/19 Publication in Nature Communications Confirms DRD2 as Target of ONC201        

 That is what we thought but it is nice to have proof!


 Amazing results.  For recurrent gbm, 1 year survival of 92% compared to 15% historical controls.

11/18/19 Extensive brainstem infiltration, not mass effect, is a common feature of end-stage cerebral glioblastomas.        

 Fascinating.   Important finding - looking at how the current treatments change the natural course of the disease.   This opens the door to new ways to treat GBMs.  Prevent the infiltration.

11/18/19 Another paid survey!        

  This is a different company than the one I posted the last 2 weeks.  This one will pay you $125 for an hour long phone conversation. Let me know if you participate.  They want" Adults (over 18 years old), GBM caregiver or patient only.  Must have at least started treatments.

11/13/19 Clinical Efficacy of Weekly ONC201 in Adult Recurrent Glioblastoma Published        

This study population was all recurrent GBM patients - not limited to the H3K27M mutant tumors as the current trials are..  They did have one patient, who has the H3K27M mutation, who had multifocal recurrent gbm and had a complete response that has lasted a year and a half so far.  They are now testing this drug in clinical trials only with tumors that have this mutation.  So although the study did  not hit the target endpoint of progression free survival at 6 months,  there were a few positives from the study:  They think they found the biomarker (H3K27M) that identifies patients where it has a better chance of helping,  and they found that the drug gets to the tumor at the correct concentration - it gets through the blood brain barrier. It is also safe.



10/27/19 Musella Foundation Online Support Groups are moving!        

 Please register and try it out. Let me know how you like it!

10/26/19 NYU Langone Health launches new molecular assay to identify patients with brain tumors        

 This is a new type of testing - which is a little more advanced than just seeing which genes are present or mutated. This tells which genes are active and may be able to better tell which patients might benefit from particular medications than just using the genetic profiling.

10/24/19 GBM patient and Caregiver Survey        

This is from our friends at PinPoint Patient Recruiting.  They will pay you to take a survey, and will make a donation to the Musella Foundation.  Let me know if you do the survey!

10/22/19 Donate or request expensive medicines!        

 We frequently  get asked if we can accept unopened Temodar and until now had to say no!  

Our copay assistance program helps only if you have insurance. For those without insurance, we can't help but this place may be able to help!


10/10/19 First-line treatment of ONC 201 in newly diagnosed DIPG pediatric patients is now open.        

 There are a few trials of this drug, as well as the compassionate use program, but a new trial opened that requires DIPG patients to start before radiation. It is hard to get the word out to those patients since things happen so fast when first diagnosed and most families are in shock.  So if you hear of a patient diagnosed with DIPG, mention this trial to them as an option.

Disclaimer:   The Musella Foundation gave a venture philanthropy grant to the company that makes Onc-201 - which means the foundation gets a return if the drug is successful.

10/10/19 Oncology Pioneer xCures Names Experts to Advisory Boards        

 We are partnering with this company (and Cancer Commons)  to track the patients in our Onc-201 compassionate use program.  We are testing  a program that will allow our patients to utilize xCures' services at no cost to the patients or to the Musella Foundation. xCures will evaluate a patient’s case, figure out the best treatment options using a combination of artificial intelligence, nurse navigators, research scientists, internal tumor board and an external virtual tumor board. xCures will then present the options to the patient who then decides with their own medical team which option to pursue.  xCures will then help them get access to the treatments if needed, and then follow up to see how it works out, both to add knowledge to their knowledge base and to help again if there is a recurrence. 

Disclaimer: I am a paid consultant for this company and I am an investor.

10/10/19 New Trial of Focused Ultrasound in Glioblastoma: Opening the Blood-Brain Barrier for Chemotherapy        

 This is a a way to allow more of the drugs to get past the blood brain barrier.  Should make the drugs work better!

10/09/19 Any Amazon users?        

 Please help us raise money to allow this project (mentioned below) to continue.  It is the most important project we ever funded and is making a huge difference in kids and young adult lives right now, and will hopefully speed up approval of the drug so that all those who need it can get it.  

Disclaimer:  This grant is venture philanthropy - which means if it is successful, the Musella Foundation will get a return.

09/30/19 Optune Open House        

 From our good friends at Novocure!  These Open Houses are valuable to anyone who has a brain tumor or knows someone with a brain tumor!


09/27/19 Barriers to accrual and enrollment in brain tumor trials        

   I am one of the authors!


09/25/19 Medicenna Presents Promising Update from its MDNA55 Clinical Trial in Recurrent Glioblastoma at the Targeting Innate Immunity Congress        

 Finally some good news for a change! Although this is early data from a small noncontrolled trial, the survival times are impressive!  They just about doubled the historical average survival for recurrent GBM without serious side effects!

09/14/19 DeAngelis named MSK physician-in-chief, chief medical officer        

 This is great news. Dr DeAngelis is one of the best neuro-oncologists and has now been named the chief medical officer of Memorial Sloan Kettering Cancer Center.  Hopefully she will be able to encourage a focus on brain cancer at MSK!


09/13/19 Tocagen Reports Results of Toca 5 Phase 3 Trial in Recurrent Brain Cancer        

 Unfortunately the trial did not meet it's endpoint of median overall survival.   I did not really expect it to as the immunotherapies appear to help only a small subset of patients, but when they do - it helps a lot.  This leads to a long tail of survivors, but the median does not change.  All of the immunotherapies by themselves will probably have this same problem.  I think the key is to combine them to the point where most people benefit.  I wouldn't write this off until we see the complete results and see if there is a signficant tail.

09/11/19 Frankly Speaking About Brain Tumors        

 This is from our good friends at the National Brain Tumor Society,  the Cancer Support Community and Gilda's Club.  It is an introduction to brain tumors. Everyone should read it.

09/11/19 Publication Reports Clinical Efficacy of ONC201 in Expanded Access H3 K27M-mutant Glioma Patients        

 These are exciting results. I am proud to say the Musella Foundation is one of the sponsors of that program!


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