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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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03/15/19 First-Of-Its-Kind Treatment Beats Back Notorious Brain Tumor        

 I love articles like this.  Diffuse midlines gliomas are among the worst of the worst brain tumors.     Of course you can not make decisions based on a handful of case reports but they do give some hope where there really wasn't much before. Your donations have helped fund this - we gave 3 grants to help get this developed and it is in clinical trials, and there is a compassionate use program open.  Ask your doctors about this if you have the  H3K27M mutation (sometimes reported as H3F3A), or a brainstem tumor.  It is most common in younger people with tumors near the midline of the brain.    We will be dedicating part of the proceeds from our National Walk To End Brain Tumors 5k events to this project!

03/14/19 Optune Open Houses        
These are informative and fun meetings. Some of them are webinars available online for those not close to a live meeting.  All are free.  They are sponsored by Novocure and the Musella Foundation is not involved - I am just letting you know about them because they are important!  

03/13/19 Newly Diagnosed Glioblastoma: A Review on Clinical Management        

 Excellent review of glioblastomas and how to treat them.

03/12/19 xCures to Implement an Intermediate Size Expanded Access Protocol for ONC201 in H3 K27M-mutant Gliomas        
This is an exciting experimental treatment for brain tumors with the H3K27M mutation.  This is usually found in children with DIPG, and people with midline gliomas - especially of the thalamus.  There are clinical trials open for it, but if you do not qualify for the trials, you may be able to get it outside of the trial.   There is no cost for the expanded access program because we - the Musella Foundation - along with the other organizations mentioned in the press release - funded it with a $1 million  grant!   Early results presented at the last Society of Neuro-oncology meeting looked good with a few impressive responses, which is rarely, if ever seen in tumors with this mutation.
Disclosure:  I have a small ownership interest in xCures.


03/12/19 Northwell neurosurgeons remove “glowing” brain tumor using breakthrough technology in Long Island first        

 Gleolan is FDA approved - it helps the neurosurgeon know what is tumor and what is not while operating.   Good work to my friend Dr Schulder!

03/12/19 A randomized, double-blind, phase III trial of personalized peptide vaccination for recurrent glioblastoma        

 I was really hoping this trial would turn out well but it failed to meet it's endpoints.   This is a different way of using vaccines - it makes a lot of sense.  However, they chose to try it on recurrent glioblastomas, which might have been too late. 

03/10/19 Triple-drug Therapy With Bevacizumab, Irinotecan, and Temozolomide Plus Tumor Treating Fields for Recurrent Glioblastoma: A Retrospective Study.        

 This looks good for recurrent GBM.  It is too small of a study to tell for sure but the survivals compare very well to historical survivals.  We need to follow all patients who use Optune to see which combinations are the best, and this opens the door for more research on using Optune for recurrent GBM.

03/09/19 Update on Medicare CAC meeting        

 Stay tuned - I will send out another news blast about this issue when the proposed rule is released!

Thanks to those who watched the video on Youtube.  I think that helped. Nobody wants to be viewed as advocating for a 2 tiered health system in the USA where 95% of private insurances pay for Optune but our elderly and disabled won't be able to get it.  Things like that can happen behind closed doors but not when everything is out in the open. Medicare did the right thing with this process. This was the first ever public CAC meeting for a device - they used to do these things behind closed doors.

03/09/19 Optune Open House        

These are nice meetings if you are using Optune or are considering it!


03/09/19 National Walk To End Brain Tumors        

 We are having a series of 5k fundraisers - visit the website to see Where and When. 

03/05/19 Brain Tumor Advocacy Alert - we need you to watch this video Wednesday Morning 3/6/19 at 9am Eastern Time!        

  I need everyone to watch this video.  Ask your friends to watch it as well - all on separate devices so each person gets counted.

You will probably see a lot of negative things being said about Optune. Take that with a grain of salt. The committee is trying to find an excuse not to pay for it and I doubt if any of the committee members have much experience with using Optune. We will point out the good things in our follow up letters!

03/02/19 Parkinson’s and cancer hope from implant drilled into skull to deliver drugs with pinpoint precision        

 This is about a new drug delivery system for Parkinson's disease but I see no reason it can't be used for brain tumors.  It allows you to do something like convection enhanced delivery but over a long period of time.

03/02/19 The sneaky way estrogen drives brain metastasis in non-estrogen-dependent breast cancers        

This may explain why using Tamoxifen for glioblastomas helped some patients.  An old research paper  (see   from 1996 showed pretty good results using high dose tamoxifen for recurrent glioblastomas.


I had a relative who did well with high dose tamoxifen for over 5 years with her GBM, but it's use fell out of favor when Temodar arrived on the scene.  Maybe it is time to go back and test this again in new combinations!

02/27/19 Medicare meeting about Optune! Tune in this Wednesday March 6, 2019        

 On a different issue, a few years ago, the medical director of Medicare told me that we will never get what we want from Medicare because the brain tumor community is not organized enough to apply pressure.  We have to show them that is no longer true.  We finally have a big step forward in the treatment of brain tumors and Medicare doesn't want to pay for it.   This is the most important advocacy issue we face now.   Trying to get additional funding for research is futile if we lose this battle because any new treatments will be expensive and if Medicare doesn't pay we won't have access anyway.

02/23/19 Improved survival of glioblastoma patients treated at academic and high-volume facilities: a hospital-based study from the National Cancer Database.        

 This shows what we already assumed:  getting treated in a academic center with a high volume of brain tumor patients will result in a better outcome.

02/22/19 Lomustine-temozolomide combination therapy versus standard temozolomide therapy in patients with newly diagnosed glioblastoma with methylated MGMT promoter (CeTeG/NOA–09): a randomised, open-label, phase 3 trial        
This is the results of a relatively small randomized study comparing Temodar to Temodar plus Lomustine for Newly Diagnosed GBM with MGMT methylation.  Results look very good - a significant increase in overall survival - about 17 months. However, I would like to see this study repeated with a larger number of patients, and possibly include Optune use.
 One problem I have is that the treatment was limited to about 6 months of therapy.  Looking at the graphs, there is really no difference between the groups for the first 2 years.  Only 2 patients at the end of the trial make the plots diverge.  These 2 patients may have had different treatments after finishing the trial treatments or may just have been lucky. 

02/21/19 Major Advocacy Issue: Optune        


 We can not let Medicare deny access to FDA and NCCN approved brain tumor patients. It sets a dangerous precedent. 


02/21/19 Malaria drug successfully treats 26-year-old brain cancer patient        

 We have been watching Chloroquine for a while. Some of our long term survivors have been taking it.  My thoughts are it might help some other treatments, such as Optune, work better but there have been no trials to prove that. The next best thing is to watch patients in our registry..  If you are going to try this, please register with us before you start so we can see how it works out!

02/17/19 Confirmation of high therapeutic effect in doctor-led clinical trials of viral therapy for brain tumor - Application for approval for the manufacture and marketing of the first cancer treatment viral drug in Japan -        

This was written in Japanese and the link takes you to a google translation of it so it is a little hard to understand but it looks like they are reporting 1 year survival rate for recurrent GBM of 92% compared with historical controls of 15%.  If that is true, this is amazing.  It was a small study but may lead to approval in Japan.

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