This is an important webinar. I will be explaining my Three point plan to speed up the search for the cure. The promising pathway act is a large part of it but there are other pieces needed!

Should be exciting.

 As I mentioned in another news article, we badly need donations!  Please participate in one of these events - you can participate in the Virtual Event from anywhere!  Or just make a donation on our website at virtualtrials.org  click DONATE!

Thanks!

 This copayment assistance program is a life saving program.  I know we all like to donate to brain tumor research only - which is one of the options we offer where 100% of your donation goes to brain tumor research. However, there are other needs like the Copay Assistance Program where your donation directly saves lives. We need donations for research and the copay program as well as our advocacy efforts.   Our fundraisers are again being negatively impacted by Covid. To donate go to virtualtriasl.org and click donate!

 Very well deserved!  Dr Germano performed one of the brain tumor surgeries on my sister-in-law's GBM.   I then invited her to join the Musella Foundation medical advisory board and she has been a valuable participant since! She serves on our grants committee to help us find and fund the most promising of research!

 Sitoiganap  is an experimental vaccine therapy for Glioblastoma.   It used to be called ERC1671 and Gliovac.  Early trials look very good so the FDA is stopping the phase 2 trial and allowing them to start a phase 3 trial.  I wish them luck.  

 The results are in and they look very good! Follow the link below to see the slides from the results presentation. I am working on getting the video of the presentation – not sure if I can but if I do, it will be linked to that page! This is a major advance in the treatment of not only brain tumors but it is applicable to all solid tumors.

 Unfortunately, the addition of Nivolumab to the old standard of radiation and Temozolomide (without Optune) did not result in any improvement in survival or progression free survival. Strangely. we always assumed that patients using steroids would do worse but with both the Nivolumab group and the placebo group did a drop better than those without steroids.  That doesn't mean steroids help - just that they do not hurt as much as we thought!

 These webinars give you a chance to ask questions of leaders in the field! Well worth watching. We broadcast them on Zoom, and simulcast them on Facebook.  It is easiest to ask questions via the zoom interface.  If you can't watch live, we post recordings in our video library!

 This may be the breakthrough that we needed.  It has not been tested on people yet (that we know of), so it is too early to get really excited but this may lead to an actual cure. This technology can edit, insert or delete any gene from the tumor.  We need to make sure it is safe first, then figure out which genes to edit.  

 This is an exciting new drug that targets EGFR mutations and is brain penetrant.   I doubt if this drug by itself will be the cure, but it will probably help a lot, and may be a part of the ultimate cocktail that is the cure.  

 This confirms what I said in a recent editorial about using Optune with Keytruda.  Optune has a positive effect on the immune response to the tumor.  It is imperative that we try various combinations to take advantage of that effect.

 Each part of this combination did well in early trials, and the idea of combining them is that the oncolytic virus will create an inflammatory reaction around the tumor which would make the Car-T cells work better.  For other types of cancers, Car-t cells provided cures in a high % of patients, but so far hasn't been able to repeat that level of success in brain tumors. This combination is an attempt at the home run - bringing that success to brain tumors. 

Disclaimer: Mustang Bio is a proud sponsor of the Musella Foundation

 This is one of my favorite conferences, and UCLA is also one of my favorite brain tumor centers. (perhaps biased as I am on their patient advisory board).  They are working on a lot of really promising stuff and this is the time to learn about it! It is free but you need to register in advance.  

 This exciting clinical trial has recently opened for patients with relapsed or refractory Glioblastomas.  The Musella Foundation has funded early work on this drug, and we had a webinar about it. See  https://virtualtrials.org/video2021.cfm?video=202105 for information about how the drug works!

 This is groundbreaking.. for pediatric (and probably adult) high grade gliomas including glioblastomas, anaplastic astrocytoma,s diffuse midline glioma and others, which have a BRAF mutation, treating with a BRAF inhibitor and possibly a MEK inhibitor resulted in most patients having a durable response.  Survivals were better than those using the standard of care.   This is early data and they are testing it in a clinical trial but it may be worth asking your doctor about if your path report mentions a BRAF mutation.  

 This is a pdf version of a PowerPoint presentation given about advanced MRI imaging.  It shows a new technique called  Fractional Tumor Burden Mapping (FTB Maps) that can show progression or response to treatment faster and clearer than the usual scans. It can also distinguish better between pseudo-progression and true progression.    This can be done by any MRI machine, but they need to obtain the software to create the maps from the Imaging Biometrics. (The contact info is in the presentation).  You can ask your doctor to order FTB Maps as part of every scan you get.

 This is a heartbreaking situation.  My worst fear (which has driven me to create the Musella Foundation) was that there was a treatment in existence that could help a lot, but we were not able to get access to it.    Optune has been proven to help. A lot. There is no longer any question that it works and has the best results of any FDA approved treatments in the USA. The problem is the expense.  And how much value you place on human life.  Here in the USA, the vast majority of insurance companies pay for it. We - The Musella Foundation - have a copayment assistance program that has been helping a lot of patients pay the copays and deductibles to the point where most of the people that we help do not have to pay anything for Optune (as well as Temozolomide, Gleostine or Avastin). Some people who make too much money to qualify for our program - or the Novocure assistance program - will have to pay something, as will people without insurance.  

In the UK, they have a strict monetary limit on what a person's life is worth.  They do it because they have a limited amount of money and need to use it where the most people would benefit. Sounds great in theory until you happen to have a serious disease and need a treatment that exceeds their limit.  The most unfair part is that the the current regulatory system is set up so that any new treatment for a rare disease will exceed the limit.  I am trying to change that with the Promising Pathway Act, but unless that or a similar bill passes, patients in the UK is not going to be able to use any new treatment.   DCVAX will hopefully get approval within the next year and is probably going to have the same problem. The CAR-t Cell therapies and viral therapies in the pipeline are going to way more expensive.  The only hope is to change the underlying costs so these treatments can be developed at a fraction of the current costs and to have more options so they can compete on cost.

 This article questions the need or benefit of adding Temozolomide to radiation for IDH wildtype Glioblastomas.   The conclusion is more research needs to be done, but there was clearly no benefit to adding Temozolomide. This goes completely against everything we thought we knew.  More research needs to be done but it opens the door to trying different approaches.

 This fundrasier already raised over $5,500 for brain tumor research!  Follow the link in the press release to learn more about it!

They say they have a urine test for brain tumors that is 100% sensitive and 97% specific. That means they can 100% of the time tell when you have a brain tumor, and 97% of the time tell when you do not have a brain tumor - so about 3% false positives - which is very good for such a test.   This can be used as a screening test during your annual physical exam.  Unfortunately we really do not yet know if early detection will make much of a difference with Glioblastomas.