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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08/02/23 Phase 1 clinical trial underway to test City of Hope-developed cancer treatment        

 This is very early - just starting human trials.  However it is also a shot at a home run therapy not only for brain tumors but most solid tumors.  It is the holy grail of cancer treatments - oral, doesn't hurt normal cells, may work on all cancers by targeting a pathway that is central to all cancers.  Will be keeping an eye on this.   The trial is open in California now and will open in Arizona soon.

07/27/23 Musella Foundation Copay Program now closed to new and renewal patients        

  We have run out of funding and the copay program will remain closed to new and renewal application until we get enough donations to the program to reopen.  Of course, we will continue to pay claims for those that have an active grant!

07/26/23 Hackensack Meridian Neuroscience Institute Now Using QuicktomeTM Brain Mapping Technology To Maximize Patient Outcomes By Allowing Neurosurgeons To Visualize Key Areas of the Brain Related To Speech and Other Key Functions During Complex Brain Surgery        

 Follow the link in the article to see a short video explaining this new technology that maps out the important areas of the brain so the surgeon knows how much he can take out without doing too much harm.  The article also talks about a new advanced radiosurgery system that they will be aquiring soon!

07/26/23 United States Food and Drug Administration (FDA) Authorizes Phase 2 Study of DB107 In Promising Turn-Around of Targeted Treatment to Treat Newly Diagnosed High Grade Glioma        

 I love this company's plan:  they look at failed trials that had some patients do well, and figure out why they failed and which patients benefit. Then they run the trial only on those patients predicted to have a good outcome.  One of their first projects is to take Toca511 and TocaFC (now called DB107) and start a trial only for people with the correct biomarker. They did not yet annoucne the biomarker - when they do we can spread word of it and notify people in our database who have that marker.  The original early trials of Toca511 looked bery good. I know of a few patients in the trial that did pretty well.  However, their large phase 3 randomized trial failed.  At that time they did not know which biomarkers predicted success but now they do.  It did not help the average patient, but it did help a long tail of people who did have this biomarker!  

07/23/23 Share Your Experiences With Glioblastoma Multiforme (GBM)        

 This is from our friends at Pinpoint Patient Recruiting. We mentioned this recently but they need a few more participants!

  They do surveys to learn about the experiences of people dealing with a Glioblastoma.  They have a few surveys now.  You can do as many as you have time for.  They pay you $30 to $105 (depending on the length of the survey) to take the survey, and will also make a donation to the Musella Foundation for every survey you fill out!  So please do them!

07/19/23 Jill Biden welcomes proposal for Medicare to pay for navigation services for cancer patients        
Navigating through a brain tumor diagnosis can be an overwhelming experience for anyone. The shock of the diagnosis, coupled with the pressure to make life-altering decisions within a short time frame, can be daunting. Moreover, these decisions are often made without any prior knowledge or experience, and under the influence of doctors who may have financial conflicts of interest.
The doctor you initially consult with could potentially lose over $100,000 in billing for the first few months of care if they refer you to the "best" doctors. Even these "best" doctors tend to recommend treatments they have access to. Every day, I encounter patients who may not have made the best decisions because they were not informed about all the available options. The number of decisions to be made can be overwhelming. Having a third-party navigator to assist with these decisions can significantly impact the outcome and reduce stress levels. We are currently working to demonstrate that our navigation program leads to better outcomes.
Doctors' biases are not always financial. Some doctors may have personal preferences against certain treatments, even if evidence supports their benefits. Or they may simply not have enough time with you to go over everything you need to know.  They might make decisions on your behalf without fully understanding your feelings. Patients should be provided with all the information in an understandable format, enabling them to make informed decisions.
Optune and GammTile are two treatments that have proven benefits, yet some doctors won't even mention them. If they do, they might discourage you from using them. With Optune, they might emphasize the inconvenience of usage, including the need to shave your head. Some doctors might feel it's better to live the remaining months without these hassles, while others believe the potential long-term survival benefits outweigh the inconveniences.
Unfortunately, the best time to start using Optune is as soon as possible after diagnosis, during or after radiation. Medicare guidelines state that they will only cover Optune if it's started within seven weeks of the last radiation dose. However, many patients prefer to wait until all other options have failed before trying Optune. This approach is not effective, as the chances of success are significantly reduced if not started early.
With GammaTile, the decision to use them must be made before the first (or subsequent) surgery. The rushed nature of these decisions often means that the topic doesn't come up in time.
Then there are clinical trials. Your doctor may inform you about the trials available at their hospital, but they might not be aware of all the trials being conducted there. It's rare for them to evaluate all trials and help you choose the best one for you.  Some trials have to start before that first surgery and you are so rushed to get into surgery that you do not find out about those options in time.
This is where a navigator can be invaluable. A third-party individual with no financial conflicts of interest, who is familiar with the options and has access to data, can educate the patient about the available options and help make these difficult decisions. We offer such a service, currently free to patients, funded by donations. To avoid conflicts of interest, we do not accept corporate sponsorships. However, raising the necessary funds to keep this program free for patients is becoming increasingly challenging, and the program is overloaded with requests. If Medicare could cover this service, we could hire more navigators and assist more patients.

07/18/23 Announcement: Webinar tonight (Tuesday 7/18/23) on SurVaxM Vaccine for Brain Tumor Treatment        

 SurVaxM is an experimental vaccine for the treatment of brain tumors. Early results from a small trial were recently reported   Of 63 patients with newly diagnosed Glioblastoma, the median overall survival was 25.9 months from the first dose of the vaccine, which was probably 3-4 months from diagnosis.  Our guest speaker is Michael J. Ciesielski, PhD, CEO of Mimivax. This should be of interest to all people dealing with brain tumors.

07/18/23 NOX-A12 Plus Radiotherapy and Bevacizumab Produces Responses in Previously Untreated Glioblastoma        

 This is early results on a small number of patients but the results are very good. They started with newly diagnosed patients with unmethylated MGMT who did not have a complete resection.  They had only  a biopsy or a debulking.  This is the worst subset of Glioblastoma.  They report of 6 patients, 5 out of the 6 are alive at the 15 month point, and 1 had a complete response, 2 had a 99% response, and 2 had a partial response that was durable!   It is very rare to see complete response or 99% response in MGMT unmethylated patients.   The trial is ongoing and worth considering for Glioblastoma patients with MGMT unmethylated.

07/18/23 Manmeet Ahluwalia: 'I Wanted to Come to the United States and Cure Cancer'        

 Nice article about one of my favorite neuro-oncologists!     He makes great points about disparities not only among minorities but among the elderly and the need to get community doctors involved since 70% of cancer patients are treated in the community setting!

07/18/23 HighField Biopharmaceuticals Announces First Patient Dosed in Phase 1b/2 Trial of HF1K16 for Recurrent and Refractory Glioma        

 Another successful early trial of a new treatment!  They report very early data on five recurrent Glioma patients who have failed all standard treatments. They had one complete response, and two had stable disease.  Unfortunately, it appears that this trial is only available in China. Hopefully once it is successful it will be brought to the USA!

07/14/23 Rare Brain Tumor Responds to Targeted Tumor Treatment with ‘Unprecedented’ Success        

 The tumor type is Papillary craniopharyngiomas. Although this is a small study of 16 patients, the amazing thing is that no patient’s tumor progressed while on vemurafenib/cobimetinib, and none have died.
The treatment is a combination of a BRAF/MEK inhibitor (vemurafenib/cobimetinib). 
   If you have any tumor (not just brain - but pancreatic, ovarian, colon, melanoma, etc) with alterations in BRAF / MEK, it may be worth it to show your doctor this article.  Both drugs are FDA approved so this should be easy to get - although expensive at about $13,000 per month.   If you can not get these drugs, xCures (our partner) is running an expanded access program for another MAPK inhibitor for tumors with any of these alterations: KRAS, NRAS, HRAS, BRAF, MEK, and ERK mutations.

This shows the importance of getting genomic testing for your tumor.  It has actionable results in a minority of cases but when it find the right markers, it opens the door to using targeted drugs that may help a lot.

07/12/23 Announcement: Webinar on SurVaxM Vaccine for Brain Tumor Treatment        

 SurVaxM is an experimental vaccine for the treatment of brain tumors. Early results from a small trial were recently reported   Of 63 patients with newly diagnosed Glioblastoma, the median overall survival was 25.9 months from the first dose of the vaccine, which was probably 3-4 months from diagnosis.  Our guest speaker is Michael J. Ciesielski, PhD, CEO of Mimivax.


07/12/23 Life expectancy in glioblastoma patients who had undergone stereotactic biopsy: a retrospective single-center study        

 This shows the need for better treatments. The biggest criticism I get about the Promising Pathway Act that I have been supporting is "Patients do not want treatments that are not fully tested."   Read the statistics from this article and consider if you were in such a situation, would you be open to trying a treatment that showed good results in phase 2 trials, or would you rather wait 5-10 year for them to complete the phase 3 trials?

07/12/23 Spatially resolved transcriptomic profiles reveal unique defining molecular features of infiltrative 5ALA-metabolizing cells associated with glioblastoma recurrence        

 This article talks about using 5ALA to find tumor cells outside of the area that shows up as tumor on MRI.  They conclude that it would be useful to analyze these cells for targeted therapies but missed the obvious use: sonodynamic therapy.  If 5ALA can find the tumor cells outside of the main tumor which doesn't show up on MRI, then using focused ultrasound to kill the cells that take up 5ALA may be effective in preventing recurrence.

07/10/23 Measuring Safety and Outcomes for the Use of Compassionate and Off-Label Therapies for Children, Adolescents, and Young Adults With Cancer in the SACHA-France Study        

 ALL expanded access treatments should be tracked in a virtual trial. We did it with the Onc-201 expanded access program and it worked out great.  

07/06/23 Time has come to rally for the Promising Pathway Act!        

 PLEASE help support this bill. You can make a huge difference.  I want everyone reading this to email their representatives, and ask 10 of their friends or family to also write.  Spread word on social media!   Follow the link below for a simple way to send the emails!

07/06/23 PNOC015: Repeated convection enhanced delivery (CED) of MTX110 (aqueous panobinostat) in children with newly diagnosed diffuse intrinsic pontine glioma (DIPG)        

 This is only a small phase 1 study but they report outstanding results - 26.1 month median survival for DIPG, where the historical average is about 10 months.

07/06/23 IL4R-Targeting Toxin MDNA55 Yields Promising OS in Recurrent Glioblastoma        

 Impressive results for recurrent gbm patients with inoperable tumors.  

07/06/23 Beating Brain Cancers With Sound Waves?        

 In this podcast hosted by Dr. Sanjay Juneja (the OncDoc on social media), Dr Ely Benaim from SonAlAsense talks about Sonodynamic therapy.   This is one of the most promising treatments for not only brain tumors but possibly for any type of cancer.  There are clinical trials going on now for recurrent GBM and DIPG. For details go to 
There is a different trial going on now with a similiar technology that can also treat patients with multifocal GBM.

07/04/23 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!   This program can help pay for the following treatments:  Optune, Temodar, Avastin and Gleostine, as well as the generics / bioequivalents of these!  If you think you may need help, apply ASAP as the program might not be open too long. Remember, seeking help is never something to feel guilty about. We are here to alleviate some of the burdens in your life and provide support during challenging times. Don't hesitate to reach out and let us assist you.

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