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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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 https://www.sonalasense.com/ 
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.



07/04/23 Ancient Virus Awakening: Hidden Culprit in Glioblastoma Brain Cancer Aggressiveness        
This article discusses a promising new target and a repurposed treatment for Glioblastomas. The researchers found that HML-2, a protein produced by a virus, plays a role in the development of treatment resistance and recurrence in Glioblastomas. They conducted experiments and demonstrated that an anti-viral drug (specifically abacavir, although other drugs may be effective as well) can effectively reduce the levels of HML-2. However, it is important to note that these findings have not yet been tested in human subjects. Notably, abacavir is commonly used by patients with AIDS, which adds an intriguing dimension to its potential role in Glioblastoma treatment.
 
Interestingly, the article included two footnotes regarding Glioblastomas in AIDS patients, and these footnotes present conflicting information. One footnote suggests that the treatment used for AIDS significantly improves the survival rates of Glioblastoma patients, while the other claims that AIDS reduces the life expectancy of individuals affected by both AIDS and Glioblastoma. It is worth mentioning that, anecdotally, I know of a 21-year GBM survivor who has taken the HIV cocktail.
 
Additionally, antivirals have been tested in small trials against CMV (Cytomegalovirus) with promising results, suggesting a potential avenue for further research in Glioblastoma treatment.
 
The discovery of HML-2's role in Glioblastoma treatment resistance and the potential effectiveness of anti-viral drugs like abacavir present an exciting development in the field. However, it is essential to conduct research and clinical trials to validate these findings and determine the efficacy of such treatments in human patients.


07/01/23 Plus Therapeutics Releases Early-Cut Data From Cancer Studies For Brain Cancer Settings        

 Early data from their phase 1 dose finding trial in recurrent Glioblastoma looks pretty good.  This is a single injection of a targeted liposome that contains radiation. This targets the tumor theoretically without harming normal cells.  We had a webinar about it last year https://virtualtrials.org/video2022.cfm?video=202205 

This is now in clinical trials for adult recurrent glioblastoma, leptomeningeal spread  as well as pediatric high grade gliomas and ependymomas.     This is one of the very few trials that accept patients with leptomeningeal spread.  They did not give numbers for the leptomeningeal group in this article but did say the treatment decreased the cell count in the cerebral spinal fluid.

Disclaimer: Plus Therapeutics is a sponsor of the Musella Foundation



07/01/23 Share Your Experiences With Glioblastoma Multiforme (GBM)        

This is from our friends at Pinpoint Patient Recruiting.  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!



06/30/23 Prognostic survival biomarkers of tumor-fused dendritic cell vaccine therapy in patients with newly diagnosed glioblastoma        

The findings of this study are highly remarkable. Even in patients with IDH wild-type glioblastoma and unmethylated MGMT, which typically indicates a poorer prognosis, the five-year survival rate reached an encouraging 33%. It is important to note that these results are based on early-stage research with a limited number of patients, so it is necessary to exercise caution before drawing definitive conclusions. Nevertheless, this study holds significant potential, and I will certainly monitor its progress closely.



06/29/23 Mechanism of Action of KL-50, a Novel Imidazotetrazine for the Treatment of Drug-Resistant Brain Cancers        

 This is a very technical article but the bottom line is they show that this experimental chemotherapy is much better than Temozolomide, especially for those tumors that are MGMT methylated but become resistant to Temozolomide due to silencing of the MMR (Mismatch Repair) pathway.  It is very early - apparently not being used in humans yet, but does well on mice.  Look at the supplemental paper figure 7b. which shows a survival curve of this new drug, KL-50 against Temozolomide.  Huge difference.  Look forward to seeing it in humans!



06/22/23 1000 Patients Treated With GammaTile Therapy        

 Congratulations to GT Medical!   They hit a big milestone - 1,000 brain tumor patients treated with their GammaTiles!   
GT Medical is a proud sponsor of the Musella Foundation!



06/21/23 xCures and DDRFA partner to make an impact on patient-driven DIPG & DMG research        
This is an exciting partnership between xCures and DDRFA, which brings together their respective strengths. xCures possesses the capabilities to collect, structure, and analyze patient data, while DDRFA, in collaboration with over 60 brain tumor foundations, including the Musella Foundation, has extensive access to patients with DMG and DIPG.
 
The crucial element driving progress in this endeavor is data. The registry established through this partnership will enable researchers to examine the utilization of various treatments, both in isolation and in combination, assess their efficacy, and study the natural progression of these diseases. This comprehensive data repository also offers the possibility of creating artificial control groups, potentially eliminating the necessity for placebo use in clinical trials for these conditions. Additionally, the platform facilitates the seamless implementation of prospective virtual trials on treatment combinations.
 
As a consultant to xCures, as well as a DDRFA partner,  I am thrilled to be a part of this groundbreaking initiative. If you are interested in participating, please follow the link provided in the article. While focused on diffuse midline glioma, which includes DIPG, the Musella Foundation and Cancer Commons are leveraging this platform for all malignant brain tumors, as well as other cancer types.


06/21/23 Quick survey on your brain tumor knowledge!        

This survey is very important to us. Please take a few minutes to fill it out!

 


06/20/23 Intraoperative MRI-Guided Resection Is Not Superior to 5-Aminolevulinic Acid Guidance in Newly Diagnosed Glioblastoma: A Prospective Controlled Multicenter Clinical Trial        

 Gliolan is an oral  dye which is taken up preferentially by tumor.  Under a special light, it glows, so that the surgeon can tell the difference between tumor and normal brain at the time of surgery.   This allows for a more complete resection and less harm to the normal brain. This paper compares the use of Gliolan to the use of intra-operative MRI.  They found that the chance of getting a complete resection is about the same - with a slight but not significant edge to the MRI, but a whopping decrease in the time of surgery by about 100 minutes using Gliolan instead of the intraoperative MRI..   



06/20/23 AANS/CNS Section on Tumors and the World Federation of Neurosurgical Societies are hosting a GBM symposium        

From our friends at the American Association of Neurological Surgeons. This free zoom event should be of interest to anyone who is dealing with a brain tumor! 



06/18/23 Senators introduce legislation to lower cost of cancer treatments        

 This is an important bill.  Every day, I receive numerous phone calls from patients who simply cannot afford Temodar (or Gliostine). As the administrator of a copayment assistance program, I have the opportunity to witness the copayment bills from countless patients, and the exorbitant charges are truly alarming. It is disheartening to come across bills where a pharmacy would demand over $12,000 for a Temodar prescription, with the patient being responsible for a copayment of $2,500. Astonishingly, by contrast, if the same prescription were obtained from Costco using a coupon from GoodRx.com, paying in cash without insurance, it would cost less than $100. It is evident that someone is profiting immensely from these drugs, while we bear the burden of exorbitant costs.



06/18/23 Carmustine wafer implantation for supratentorial glioblastomas, IDH-wildtype in "extreme" neurosurgical conditions        

 Gliadel has been approved since 1996 for recurrent glioblastoma and in 2003 for newly diagnosed glioblastoma.  They are biodegradable wafers implanted into the resection cavity at the time of a brain tumor surgery, and slowly release BCNU chemotherapy  This new study shows remarkable results in the worst subgroup of patients - those over 80 years old with a slow karnofsky score.  Survival was improved from 16.5 months to 39 months, with no additional side effects (beyond what the surgery usually causes).



06/17/23 GammaTile® (GT) as a brachytherapy platform for rapidly growing brain metastasis        

 GammaTile is fda approved for newly diagnosed as well as recurrent malignant brain tumors, both primary and metastatic.  They are a form of brachytherapy - an implant positioned in the tumor bed after the tumor is removed to start radiation therapy immediately and to where it is needed the most.  This article talks about the experiances using it on 10 patients with fast growing brain mets.  None of them had a local recurrence.with a median follow up time of 6 months. There were no adverse radiation effects. 



06/12/23 Stanford Scientists Identify Genes Linked to Familial Brain Cancer        

Note that the majority of Glioblastomas are not linked to these genes - but this is useful if multiple family members have Glioblastomas.



06/12/23 Dr Henry Friedman podcast        

 This is from our friends at The Glioblastoma Research Organization: an interview of Dr Henry Friedman of the  Preston Robert Tisch Brain Tumor Center at Duke University.   Interesting stories, and he mentions me at the 31:40 mark!).

 


06/08/23 Senators Braun, Gillibrand, colleagues introduce bipartisan Promising Pathway Act to help patients with ALS and other life-threatening diseases get treatments        

In my opinion, this is one of the most crucial bills we have ever encountered. It builds upon existing frameworks such as the accelerated approval pathway, expanded access, and right to try laws, with the primary objective of ensuring convenient and widespread accessibility to experimental therapies. Furthermore, it places a strong emphasis on systematically gathering data from every patient who undergoes these treatments, allowing us to derive valuable insights from their experiences. This bill is precisely the transformative measure needed to make a significant impact in the ongoing battle against cancer. I am currently working on an effortless way for you to express your support for this bill to your representatives in Congress. I will notify you as soon as it is ready!



06/08/23 Targeting the IL4 receptor with MDNA55 in patients with recurrent glioblastoma: Results of a phase IIb trial        

 These are pretty impressive results for a single infusion of this experimental drug. 



06/05/23 Use of proton pump inhibitors (PPI) in glioblastoma (GBM) and relationship to overall survival in a national real-world evidence (RWE) database.        
This is an impressive application of real-world evidence. Dr. Castro hypothesized that the use of proton pump inhibitors (PPIs) may have a negative impact on the survival of patients with Glioblastomas. Typically, testing such a hypothesis would be challenging and costly. However, he utilized a regulatory-grade registry that maintains a comprehensive record of the medications patients take. By analyzing this data, they were able to demonstrate a significant negative effect associated with PPI usage. This effect could potentially be as significant as the difference between methylated and unmethylated MGMT status.
 
While it is advisable to replicate these findings using other datasets for confirmation, until counter-evidence emerges, it would be worthwhile for individuals taking the drugs listed below to discuss the matter with their healthcare providers and consider alternative medications.
 
The proton pump inhibitors include:
 
  • Omeprazole (Prilosec) - available over-the-counter without a prescription.
  • Esomeprazole (Nexium) - available over-the-counter without a prescription.
  • Lansoprazole (Prevacid) - available over-the-counter without a prescription.
  • Rabeprazole (AcipHex)
  • Pantoprazole (Protonix)
  • Dexlansoprazole (Dexilant)
  • Zegerid (Omeprazole with sodium bicarbonate) - available over-the-counter without a prescription.
Disclaimer: I am a founder and paid consultant to xCures and hold stock in the company.


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