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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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10/20/21 NY hospital recruiting cancer patients for groundbreaking treatment loopcayman 20 hrs ago        

    Of course it is too early to tell how well this works but I love the concept. They are trying to bypass the blood brain barrier by grafting abdominal tissue into the cavity left when removing a brain tumor.  This should allow chemotherapies to reach the tumor better.



 This is a new approach to leptomeningeal disease - which is when the cancer spreads to the lining of the brain and /or spinal cord.  This is usually a very bad sign, with an average of about 2-3 months survival after diagnosis and no effective treatments approved yet. I wish them luck!

10/16/21 Systemic coagulation is activated in patients with meningioma and glioblastoma        

 This shows why brain tumor patients are more likely to develop blood clots than people without brain tumors.  They do not suggest anything to prevent it but it may be worth talking to your doctor about it.  All brain tumor patients should know about blood clots. Go to for a nice overview with symptoms and how to prevent it!  This can be life threatening so you absolutely need to know the warning siges:  Swelling, pain, tenderness and /or redness of the skin can occur in any body part but most commonly the back of the leg. Left untreated, blood clots can travel to your lungs (pulmonary embolism) - the signs of which are difficulty breathing, faster or irregular heart beat, chest pain or discomfort which gets worse with taking a deep breath or coughing, coughing up blood and very low blood pressure, lightheadedness or fainting.

If you have any of these symptoms, it is an emergency and you need to get it checked quickly. They are very treatable if caught early but can cause huge problems or even death if ignored.

10/07/21 ONC206 for Treatment of Newly Diagnosed, or Recurrent Diffuse Midline Gliomas, and Other Recurrent Malignant Brain Tumors (PNOC 023)        

 ONC-206 is a new experimental therapy, related to Onc-201.  The first clinical trial of Onc-201 just opened at UCSF for patients with newly diagnosed diffuse midline gliomas or recurrent high grade gliomas.  

10/04/21 Sharing your GBM Experience Helps Others        

 This survey is from our friends at Pinpoint Patient Recruiting.  They are trying to learn what brain tumor patients need, so they can help you better.  This is similar to the request we made last month but they changed the requirements. Now they are looking for patients diagnosed with a Glioblastoma within the last 24 months, or their caregivers.   You get $75 for doing the survey!

10/04/21 Repeated superselective intraarterial bevacizumab after blood brain barrier disruption for newly diagnosed glioblastoma: a phase I/II clinical trial        

 This is a different way to use Avastin: superselective intra-arterial cerebral infusion (SIACI) after Blood Brain Barrier Disruption.  The "standard" way involves IV infusion every other week until progression. This new way is delivering the Avastin only where it is needed by using a catheter inserted through the groin and threaded up to the area of the tumor. They can map out which arteries feed the tumor and inject the Avastin directly into those arteries in the brain, after blood brainso the drug is delivered in very high concentration exactly where it is needed, much higher dose to the tumor than using the IV methods. And the rest of the body doesn't get exposed, or gets a very insignificant dose, so it theoretically shouldn't have the systemic side effects of Avastin.  The procedure to perform this does add a risk, but it is only 3 injections, compared to many more the standard way.  

As to results, they look promising. The abstract did not include any controls so I looked up the original Avastin trial for newly diagnosed glioblastoma  using the standard IV method, and that did have a control group. This is just a rough comparison, as the results vary widely by many factors so the numbers aren't directly comparable.

Control group:  PFS: 7.3 months  Overall Survival:  16.1 months

IV Avastin : PFS: 10.7 months  Overall Survival:  15.7 months

SIACI Avastin:  PFS: 11.5 months  Overall Survival:  23.1 months

This is a proof of concept.  I would love to see this method of delivery used with a customized set of drugs based on the molecular pathology report from the surgery. 

09/30/21 Oblato Announces that it has received a Positive Response from the FDA for the use of OKN-007 for patients with high-grade gliomas in an Expanded Access Program        

 The Musella Foundation gave a $30,000 grant to help jumpstart the development of this drug - OKN-007 - back in 2013.  This is your donation dollars hard at work!

  They have been running a clinical trial of the drug for newly diagnosed as well as recurrent Glioblastomas.  Early reports look interesting  for recurrent glioblastoma, the median progression free survival was only 1.4 months but overall survival was 21 months.  There was no control group but historically, patients with recurrent glioblastoma rarely live over a year. 21 months would be outstanding.

They will soon be starting more clinical trials, for diffuse midline glioma, DIPG, high grade gliomas and others.  They just announced that they will soon open an expanded access program, even before these new trials start. May be worth considering.

09/28/21 Neuroscientist Michelle Monje awarded MacArthur 'genius grant'        

 Well deserved!  Dr Monje is one of the best brain tumor doctors in the world, as well as one of the nicest people! So happy for her!

09/26/21 Musella Foundation awards $50,000 brain tumor research grant!        

 This project lays the foundation for a new way to treat all cancers.  If successful, the methods could be used for any targets.

09/25/21 xINFORM - Personalized Treatment Options Software        

 I think that all patients should sign up for this service. It is free to you (and you can get a $100 gift card if you do the survey after getting the options report).  It is useful even if you do not need to make a decision immediately - the records will be in place and organized so if a recurrence happens - you are not left scrambling to find and organize everything.

1. It will help you organize your medical records.  xINFORM takes medical records as PDF files and extracts the important information into a structured format that is easy to read.  xINFORM will automatically update the records as needed (if you give your permission - otherwise you can upload the records periodically).   It then provides you with ideas for treatments. These can be clinical trials, experimental treatments, off label cocktails or standard treatments.  You can update the list of options whenever something changes. 

2. It helps your doctors - they can see at a glance the important information about your medical history, and our report helps narrow down the hundreds of possibilities to a managable few. And finally if you and your doctor decide to pursue a treatment via expanded access or under the right to try laws, our team can help with the paperwork and phone calls - saving your doctor a lot of time and aggravation!  Your doctor can get access to a different xCures program where they can manage multiple patients through the process if they like.

3. Your participation helps all other patients with a similar case. We observe what treatments you do and the outcome so we can identify treatments that are working - and those that are not working.  Every individual is different of course - but in the case of cancer - playing the odds  of trying what worked better in similar cases is better than finding an article on the internet and trusting it.

09/25/21 Sunday's 9/26/21 webinar is postponed!        

 Unfortunately we had a scheduling problem and have to cancel tomorrow’s webinar.

The webinar was going to be on Kiyatec's newly approved test called 3D Predict.  I wanted to tell our patients about the test, and we will have the webinar as soon as possible. This test is the best way to tell if Temozolomide is going to be worth using or not in your particular case. It is more accurate than MGMT testing. Of course it is not perfect, but just better than MGMT testing. It will also test other drugs and tell you which may work the best. 

It requires a tumor sample, so f you are going to have a surgery, it is worth considering asking your doctor about ordering this test. For details see

09/23/21 Novel Virus Targeting Deadly Brain Tumors Shows Early Promise        

 This is the first use of neural stem cells to help deliver an oncolytic virus. Early results look good, but of course need to be studied in a larger trial!

09/21/21 The Musella Foundation presents two webinars this week!        

 Both webinars this week are very exciting. Note the new dates and times. We are doing a webinar on a Friday afternoon to see if we can get better participation.

The first one, on xInform, is part of our patient navigation program. Kenny Wong will speak about the new version of xInform software which gives patients a graphical representation of their cancer journey as well as a customized report on the best treatment options for them.     You and your doctor decide which treatments to pursue - we just supply the ideas - we do not do any actual treatments.  Since this is a new program, xCures is offering a $100 gift card for feedback to participants who go through a 15 minute survey after getting their report!    This service is free to our patients.

The second webinar is on KIYATEC's new test that can tell how the commonly used treatments will work on your tumor. It is more specific than the MGMT test. I have seen the presentation and it is definitely worth watching - and worth ordering the test which is now available!

09/12/21 Study protocol for OptimalTTF-2: enhancing Tumor Treating Fields with skull remodeling surgery for first recurrence glioblastoma: a phase 2, multi-center, randomized, prospective, interventional trial        

 This is an exciting new trial, where they are going to try to increase the effectiveness of Optune by drilling 5 small holes through the skull over the tumor with the intention of increasing the field strength of Optune where it is needed the most.  It is a randomized trial for people with recurrent glioblastoma. Half of the patients will get the remodeling surgery and half do not. All of the patients then get Optune plus whatever their doctor thinks is best.

Note that the article has a typo in the clinical trial identifier. For details go to:  (They left off the last 9 in the NCT number!)

09/11/21 A Month I Hope No Reader Must Face the Loss of A Child        

 Sept. is child cancer awareness month. This article by a friend of mine talks about the loss of her daughter, Vivienne, and ways you can help speed up the search for the cure. She mentions the Promising Pathway Act. I think getting that law passed is the #1 most important thing we can do to speed up the search for the cure. And it doesn't even cost you anything. Just go to and send a letter to your representatives. Only takes a few minutes. Then send it to all of your friends and family to do. We need a LOT of emails to make any difference.  If you have any political connections, talk to me about how we can use them!

09/11/21 The Importance of Shared Decision-Making for Patients with Glioblastoma        

 I am one of the authors of this paper on how the medical decision making process should be handled.

09/07/21 Lessons learned from contemporary glioblastoma randomized clinical trials through systematic review and network meta-analysis: part 2 newly diagnosed disease        

 This is an overview of the major phase 3 clinical trials for newly diagnosed Glioblastoma.    Unsurprisingly, TTF  (Tumor Treating Fields, also known as Optune) had the best results of any phase 3 trials for Glioblastoma.  The most upsetting thing is that other treatments that looked good are not only not available but have been discarded and are no longer being developed. One such treatment is ICT-107. This was a therapeutic vaccine that did amazing in some people but it failed to hit it's main endpoint on a randomized phase 2 study.  Some analysis of the trial showed that it really was a success but not as designed in the original protocol so it was deemed a failure.   As this article shows, it still did a lot better than the standard of care (this paper considers the old standard of care before Optune was added).   I am trying to get a new law passed - the Promising Pathway Act - which would let us get access to the group of treatments from this article that did better than the standards but are not available to you now.  

09/05/21 Does proton therapy have a role in the treatment of brain tumors?        

Proton radiation has a few theoretic  benefits over the standard photo or gamma radiation.  It can limit the radiation dose to the normal tissue better and should have less long term side effects. 

If a tumor is up against the optic nerve, Proton radiation can hit the tumor without hurting the optic nerve.   

The downside is most brain tumors are diffuse and you need to treat a border around the tumor anyway, and it is more expensive and harder to find a facility.

More studies need to be done to prove an advantage.   

08/28/21 #CancelChildhoodCancer citizen petition campaign.        

This is quick and easy.    We need you to sign a petition on to help speed up the search for pediatric cancers, including brain cancers! Our friends at the Pediatric Brain Tumor Foundation are spearheading this campaign! This literally took me 10 seconds to do.  

08/26/21 Researchers Discover Treatment That May Be Viable For Human Brain Cancer        

This article talks about a new treatment in dogs that have glioblastomas. A single injection helped most dogs and 1 dog had a complete remission.  Next they will be trying it in people. I wish them luck and will be keeping an eye on this!

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