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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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01/14/19 Copay assistance program is now open!        

 Thanks to generous donations, we are able to reopen our copay assistance program!  We have a lookback period of 3 months from when the completed application arrives so if you are approved, and have paid for a covered treatment in the last 3 months we can reimburse you!  




01/11/19 Publication Reports Role of Dopamine Receptors in Cancer and ONC201 Response        

 The article they mention is at http://clincancerres.aacrjournals.org/content/early/2018/12/19/1078-0432.CCR-18-2572.long

but it is not free. It shows that the DRD2 is overexpressed in many types of cancer.  Onc-201 blocks that receptor, but they also found that high levels of DRD5 make the cells resistant to the Onc-201.  So for this drug to work, we need high DRD2 and low DRD5.  That happens in most brainstem gliomas, and high grade gliomas that are in the midline of the brain - especially those in the thalamus, and in younger patients.   There are about 14 clinical trials going on for Onc201 in various cancers, including brain.  For those who do not qualify for the clinical trials, there is a compassionate use program available – contact us (the Musella Foundation)  for details 888-295-4740

 

 




01/09/19 ERC-USA Initiates Therapy Under Right to Try Law With First Patient In California Using Investigational Compound ERC1671 for Treatment of Glioblastoma        

 This is the first case I heard of where a brain tumor patient was able to get a treatment under the "Right To Try" laws.  I do not know what the costs are (if anyone finds out - please let me know).  This is one of the more exciting vaccines. It is made with fresh tumor sample from the patient AND with tumor samples from 3 other people with the same tumor type. The idea is that should allow the vaccine to hit any of the current targets in your tumor, but also prevent the tumor from mutating around the vaccine - since the most common mutations were picked up from the donors!




01/09/19 Musella Foundation awards 2 grants!        

The first grant is for the development of a new type of vaccine for the treatment of brain tumors.  The second is a project to try to make it easier to find the correct clinical trials.  It is not just a matching service - it is a system where clinical trials will be explained and reviewed so we have more information to go on when selecting a clinical trial!

 




01/07/19 Biodegradable wafers releasing Temozolomide and Carmustine for the treatment of brain cancer.        

They should have done this a long time ago. I hope this becomes available for patients soon.  The delivery method should be approved separately from the drugs used - so we can mix and match drugs based on a patients' genetic profile.




12/26/18 Do Corticosteroids Diminish Immune Checkpoint Blockade Efficacy?        

Although this article is about checkpoint inhibitors in lung cancer, the same might apply to brain tumors.  It has already been shown that steroids may decrease the effectiveness of other brain tumor treatments. Unfortunately, there are times when steroids are needed so we can't just discontinue them. (Note: if on steroids - you can not just stop cold turkey - they have to be weaned off on a specific schedule or you can die!)




12/24/18 Identification of a novel role of IL-13Ra2 in human Glioblastoma multiforme: interleukin-13 mediates signal transduction through AP-1 pathway        

This article shows that most GBMs overexpress IL-13Rα2  and that this may be involved in making the tumor invasive, proliferation and angiogenesis.  There are a few experimental treatments that target this marker.  ICT-107 was a vaccine that showed remarkable results in a few subgroups of patients but "failed" their pivotal trial  and is no longer in development.  GB-13 is in preclinical testing and hopefully will get into clinical trials soon..




12/24/18 Tumour treating fields in a combinational therapeutic approach        
Good review of how Optune works and talks about  how it may work better in combinations.
Our virtual trial is trying to identify combinations that work well.  If you are using combinations, make sure to register with our virtual trial project  virtualtrials.com/  click on virtual trial.  We will be able to identify good combinations faster than any trial can because patients are doing these combinations now and nobody is tracking it. When the researchers propose a trial of combinations, it takes about 3 years and lots of money to do one combination.  There are many possible combinations out there. It is impossible to do a formal trial of each.  
 



12/24/18 Targeting cellular metabolism using rapamycin and/or doxycycline enhances anti-tumour effects in human glioma cells        

This study identifies a few promising combinations of readily available drugs.  However, it also shows that it is hard to predict which combinations will work in an individual.  Different cell lines reacted different ways, and sometimes made the tumor grow faster instead of helping.  More research needs to be done but I think this is a step in the right direction.  They may be able to find readily available (and sometimes cheap) drugs that can be added to the standard treatments to make them work much better.




12/21/18 FDA TO FACILITATE ACCESS TO UNAPPROVED DRUGS        

This sounds like a great program. We have been helping patients get access to experimental treatments for a while and it takes a lot of time on our part, the doctor’s part and the drug companies' part.  I hope that this will smooth things over.

If anyone tries it, please let me know how it works out!

 




12/20/18 Penn Medicine Launching Telemedicine Platform for Brain Tumor Consults        

 Dr Brem is another one of my favorites.  They offer proton beamm radiation and immunotherapy trials including CAR-T cell which is one of the most promising new treatments.




12/19/18 Dopamine Receptor D5 is a Modulator of Tumor Response to Dopamine Receptor D2 Antagonism.        

I have written a lot about this drug (Onc-201) lately - I am excited about it and we (the Musella Foundation) have a special interest in it because we gave grants to help them get this far!  This study shows that it may also be good to treat many other types of tumors that overexpress the target!  Right now for brain tumors it is in clinical trials for DIPG and high grade gliomas that have the H3 K27M mutation - which usually occurs in younger people with tumors in the midline of the brain.




12/15/18 An early feasibility study of the Nativis VoyagerĀ® device in patients with recurrent glioblastoma: first cohort in US.        

Voyager is an experimental  device that is worn on the head and is used to treat the brain tumor.  This small study shows that the device is safe, but we can't tell if it helps yet.  They have a very impressive list of authors on the paper, so I know the research will be done correctly.




12/15/18 Finding Hope in the Face of Brain Cancer        

 This is a nice story about a patient with  an H3 K27M mutant glioma, which is one of the worst types of brain tumors. 

This involves the drug Onc-201, which the Musella Foundation has given a few grants to help develop!




12/13/18 Tumor treating fields increases membrane permeability in glioblastoma cells.        

 This show a different possible method of action for Optune.




12/10/18 Musella Foundation awards 2 more pediatric brain tumor research grants!        

Both of the grants we gave out today are urgent projects that needed to be done.  Thanks to the generosity of our donors, we were able to quickly approve them - both applications were received within the last 4 days and our dedicated medical advisory board were able to evaluate and approve them quickly!




12/10/18 Survivin Vaccine for Newly Diagnosed GBM        

 This is another vaccine that is a simple shot in the arm. It is a stock treatment - it does not require tumor tissue, and  in a small trial showed a nice increase in average survival over historical controls.  These are the types of treatments that need quick approvals so everyone can get them.




12/05/18 Cancer therapy shows promise for some brain tumors        

This is the experimental drug Onc-201.    When the article says that it was largely ineffective in a pilot study for GBM, they did not point out that that study included mostly GBM patients who did not have the H3 K27M mutation, and they have since realized that this mutation makes the tumor more sensitive to this drug.

 The current clinical trials (and compassionate use program) requires the H3 K27M mutation be present. (DIPGs do not require a biopsy – it is assumed that most will have the mutation).

 

The mutation H3 K27M is a marker of the worst of the worst brain tumors.  Most DIPGs have it, and it is found in the midline and spinal cord gliomas usually of younger adults and kids.  Until now, there really was no hope for these tumors.  This drug gives some hope. It is not a miracle cure for everyone but it is a huge step in the right direction.  It is an oral drug with minimal side effects.  Look at your pathology reports and see if you have this mutation. If you do, ask your doctor about Onc-201.

The Musella Foundation has been a supporter of it's development since they started.




12/03/18 Functional Biological Activity of Sorafenib as a Tumor-Treating Field Sensitizer for Glioblastoma Therapy.        

 I am a big fan of Optune, and think almost all GBM patients should be on it. It is the best treatment currently available, but it is not good enough by itself.  We need to find what to add to it so that it works for everyone.  This article presents one such combination.   There are hundreds of other combinations that also need to be tested and the only way we are going to find the best combination is for us to track the outcomes of every patient who uses Optune.  We are now tracking patients in our virtual trial project. Go to virtualtrials.com and click on virtual trial to learn about it and join. It is free - but you need to commit to posting update monthly for as long as needed.  All brain tumor patients should be participating, but especially if you are considering Optune.




12/03/18 Help Us Better Understand Glioblastoma Multiforme - Paid survey!        

 This is from our friends at Pinpoint Patient Recruiting.  They are doing a survey about GBMs. They want GBM patients or caregivers to participate in an online survey, and are offering you $75 for your time.  They will also make a donation to the Musella Foundation!

Please let us know if you do the survey and your experiences with it!




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