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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06/20/21 Novocure Announces Launch of MyLink™ to Enable Patient-Guided, Remote Download of Optune® Usage Data        

This will allow Optune users to see their usage data. Very important as it has been shown that the higher compliance rate the better the patient does.  Over 90% is perfect but anything over 70% helps. It will be available soon!



06/19/21 Virtual Trials: Causally-validated treatment effects efficiently learned from an observational brain cancer registry        
 
This publication (for which I am one of the authors!) directly addresses, and largely validates the hypothesis that originally motivated our brain tumor virtual trial project. The paper develops a mathematical model that uses patient-reported data from the foundation's online registry, comparing these to the results of seven clinical trials with analogous inclusion criteria. The results closely mirrored four of the comparison trials. One further comparison was well within the margin of error, and another was still within the error margin, but only barely, (This last trial was a strange one, for recurrent high grade glioma patients who never used chemotherapy before and the number of patients was small.)
 
 
The bottom line is that a registry like ours is able to efficiently mirror the results of large randomized trials, and, in so doing, involving many fewer patients, and costing much less. Note that the data used in this paper was from an earlier generation of our registry; The current version is regulatory-grade, using both patient reported-data and medical records for verification.


06/17/21 Prospective prediction of clinical drug response in high-grade gliomas using an ex vivo 3D cell culture assay        

 This is a major breakthrough in finding the best treatments for a patient.   They use a new test which can predict if your tumor is going to respond to Temodar (and a handful of other drugs). The important point is that there are some patients with unmethylated MGMT that are predicted to respond to Temodar even though we thought these people had a very little chance of responding.  And they did respond.   There are also cases presented where patients with methylated MGMT were predicted that there tumor would not respond to Temodar and they did not respond.  



06/17/21 Costly brain cancer drug no longer covered by Medicare        

 Gleostine, also known as CCNU and Lomustine, will no longer be covered under Medicare.  The drug company does offer an assistance program at http://www.nextsourcepharma.com/ 

  and there are discount coupons available on Goodrx.Com

But this type of problem is not acceptable. The way drugs are paid for has to be completely overhauled.  Gleostine is one of the oldest drugs.  It is only going to get worse as each new generation of treatment comes out, they will be exponentially expensive.  Unless we make changes now. The Promising Pathway Bill should put a brake on the price increases.



06/14/21 Save the Date! Promo Discount Code for National Walk To End Brain Tumors: Clark, NJ 7/24/21        

 This will be a live event. Should be fun and will raise money for brain tumor research!



06/14/21 Veliparib + RT + TMZ in Patients With Unmethylated MGMT Glioblastoma        

 Unfortunately this trial failed to show any survival benefit.  We had high hopes for this drug Veliparib, which is a PARP inhibitor that does cross the blood brain barrier.   We need better treatments for a glioblastoma with unmethylated MGMT as the overall survival for both the experimental and treatment group was less than 13 months.  We are still hoping that the experimental treatment Val-083 which is also in trials for unmethylated Glioblastoma shows better results.



06/11/21 Oncolytic Virus Teserpaturev Approved in Japan for Malignant Glioma        

The Japanese version of FDA granted approval of this new treatment for Glioblastomas!   The clinical trial had amazing success for recurrent Glioblastoma.  We are trying to get access here!



06/10/21 Promising New Legislation Could Transform the FDA's Drug Approval Process, Leading to Better Treatments and Lower Prices        

 I wrote this Op-Ed about the Promising Pathway Act.  It is worth a read. We will be launching a letter writing campaign as soon as the House version of the bill is ready. The senate version was introduced a few weeks ago.



06/09/21 Combination chemotherapy versus temozolomide for patients with methylated MGMT (m-MGMT) glioblastoma: results of computational biological modeling to predict the magnitude of treatment benefit        

Very interesting concept. They did a mathematical model of numerous biomarkers to try to figure out which is best for an individual patient with newly diagnosed, methylated MGMT Glioblastoma: Temozolomide, Lomustine or the combination of the 2.  In general the combination was best for most but there are cases where one or the other drug alone was better than the combination.  Theoretically, they could predict which path to take, improving the effects of chemotherapy, and in some cases, minimizing unneeded side effects. It has to be tested in patients to make sure it works, but this is the type of research we need. Figure out why and in which patients treatments work instead of blindly using the same treatments on everyone.



06/08/21 Y-mAbs Announces Update on Omburtamab for DIPG        

 They announced an increase of 3-4 months in median overall survival. That sounds like nothing but for DIPG it is significant. It is very rare for a DIPG trial to show any benefit.  This could be the start of major progress against DIPG as part of a combination of therapies.



06/06/21 Musella Foundation awards two more brain tumor research grants!        

 These 2 grants are exciting. 

We did a webinar about the Gallium Maltolate project. See https://virtualtrials.org/video2021.cfm?video=202105 This is a new approach to treating brain tumors. They are trying it on Glioblastomas but it may work for most cancer types - not just brain tumors.

To be honest, I never heard of uORFs before this grant application came in. I had to research what it is, and found that they regulate gene expression and thereby can influence how much of a protein is made by the cell.  Dysfunction of the uORFs may be the underlying cause of many cancers, and very little research has been done into the connection between uORFs and cancer. The researcher chose to work on Group 3 Medulloblastomas because it is known that these tumors rely heavily on translational regulation. If this project is successful it may lead to breakthroughs in all cancer types.



06/04/21 Heterogeneous delivery across the blood-brain barrier limits the efficacy of an EGFR-targeting antibody drug conjugate in glioblastoma        

 We had high expectations for this treatment, and were shocked when it failed the clinical trial.  this article may explain why and opens the door to try again using a way to get the treatment into the brain - perhaps with focused ultrasound, or other ways around the blood brain barrier.



06/04/21 Market Research Opportunity for Patients and Caregivers        

We have worked with this organization for a few years. They have a survey for Glioblastoma patients and / or the caretakers, where they will pay you to participate. They also donate to the Musella Foundation!  Please participate if you can!



05/30/21 Important Brain Tumor webinar tonight Sunday 5/30/21 7pm Eastern        

 I will be speaking tonight about the Promising Pathway Act.  It is difficult to get across how important this bill is in just a short text blurb, so I am going to give it the treatment it needs. I will start with a little history of the Musella Foundation, and the reasoning for our various programs, and how it all ties into the Promising Pathway Act. This bill is a game changer. It will quickly impact the lives of brain tumor patients if passed.  I thought the same about the "Right To Try" bill, which passed but turned out not to make much of a difference (except to the few lucky enough to be able to use it!). We looked at the drawbacks of the Right To Try law,  accelerated approval, as well as the expanded access pathway and helped to create a new pathway that solves the problems and hopefully can allow us to make quick progress in the fight against brain tumors - while increasing the amount of research conducted, getting access to more treatments and holding costs down!



05/25/21 Japan to approve virotherapy drug for 1st time for cancer treatment        

 This may be a breakthrough in the treatment of Glioblastomas.  Teserpaturev is the new name for the treatment that we used to call G47 Delta.   In the clinical trial for recurrent Glioblastoma, they had a 92.3% one year survival rate, compared to historical rates of about 15%!   It should be available in Japan soon and we will work on getting it here!



05/25/21 Novocure Announces Clinical Trial Collaboration with GT Medical Technologies to Evaluate Tumor Treating Fields Together with GammaTile Therapy in Recurrent Glioblastoma        

 I think this is the perfect combination.  The original phase 3 trial of tumor treating fields (TTF) for recurrent glioblastoma did not show a benefit because the patients were too far gone - TTFs are slow and gentle, and need a few months to turn the tide and shrink the tumor away. Most patients in the trial did not have the time for TTFs to work.    GammaTile is implanted at the time of surgery, and slowly releases radiation to the tumor bed.  It possibly could buy the time needed for the TTFs to kick in. I will keep an eye on this trial.



05/25/21 Case Report: Prolonged Survival Following EGFRvIII CAR T Cell Treatment for Recurrent Glioblastoma        

 Of course 1 case report doesn't prove a treatment works but it is fantastic to see a long term survival with just one injection of CAR T cells!



05/23/21 Brain Tumor Webinar Tonight (Sunday 5/23/21 at 7pm Eastern)        

 Metastatic brain tumors are about 10 times more common than primary brain tumors, but there has been a severe lack of research in these tumors.  In the past, once you had a cancer that spread to the brain, it was considered over and impossible to really do anything for it.  Times have changed and now that we have better ways to control those primary tumors, we also have better treatments for the brain mets. Some of these also apply to primary brain tumors. Our special guest speaker today is  Dr Tawbi, who is the co-director of the brain metastasis clinic at MD Anderson Cancer center!



05/23/21 Musella Foundation awards three brain tumor research grants!        

 Most of the funds used for these grants were raised by our National Walks To End Brain Tumors. We had an actual live 5k walk in Florida and a virtual walk in MN. We have 2 virtual walks coming up in NJ and another in UT. See https://walktoendbraintumors.org/ for details. A special thanks to those volunteers and participants who made this possible!

For the grant from our DIPG All-in-initiative fund, some of the funding came from our partners in the DIPG All-In-Initative:  The McKenna Claire Foundation and the Prayers From Maria Foundation. 



05/20/21 A randomized phase II trial of veliparib, radiotherapy and temozolomide in patients with unmethylated MGMT glioblastoma: the VERTU study        

 Unfrotunately, this trial failed to show any improvement by adding a Parp inhibitor to the standard treatment for MGMT Unmethylated Glioblastoma. It highlights the need to develop new treatments, as survival was only 1 year in both the experimental group and the standard of care group.



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