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.  

 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!  It is especially important to make sure that Bernie Sanders gets a lot of emails - so if you are from Vermont - get everyone you know to do this!

 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!  It is especially important to make sure that Bernie Sanders gets a lot of emails - so if you are from Vermont - get everyone you know to do this!

 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.

 Impressive results for recurrent gbm patients with inoperable tumors.  

 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.

  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.

 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

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!

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.

 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!

 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!

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 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..   

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! 

 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.

 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).

 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.