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This is one of my favorite new treatments. Very elegant. You get a dye injected IV which preferentially concentratees in the tumor. Then foucused ultrasound is applied using a helmet like device for a few minutes. This activates the dye which kills the tumor cells. It is noninvasive (other than the injection into the arm) and can be repeated if needed. The Clinical trial for DIPG is now open, and the trial for recurrent Gliolbastoma will open soon. I will be watching this closely and wish them luck.
Pinpoint Patient Recruiting is doing another survey of Glioblastoma patients (or caregivers). They pay you $75 for your time to take a 30 minute online survey! They also are a sponsor of our organization. See details below!
We (the Musella Foundation) are also looking for long term survivors (over 2 years for Glioblastoma or DIPG / DMG patients or 3 years for other tumor types!) to post their survivor stories on Virtualtrials.org. Reply to this email for details!
This may affect you - so read this! Brain tumor patients are usually given a drug to help prevent stomach problems from the steroids they use. Most commonly it is a proton pump inhibitor such as
This letter to the editor to Neuro-Oncology practice raises a very serious issue. These drugs may cause resistance to Temodar (Temozolomide) by increasing the levels of an enzyme called ALDH1A1. If this enzyme is high, the average survival for a patient with a methylated MGMT GBM is 14.6 months compared to 32.9 months if the enzyme is low. For Unmethylated MGMT, the numbers are 12.6 vs 21.4 months. This is a HUGE difference.
This has not been tested in a GBM trial, but it raises a red flag when considering these drugs, especially when there are easy alternatives. Instead of the drugs listed above, H3 blockers, such as
Diffuse midline gliomas with the H3K27M mutation are among the worst of the worst brain tumors, even if the diagnosis is not glioblastoma.. In this meta analysis, they found that these patients only have a median overall survival of 10 months and although radiation helps, no chemotherapies they tested helped at all. This is a huge unmet need.
These 5k runs / walk are a lot of fund and raise money for our brain tumor grants program!
This article talks about the combination of Onc-201 and paxalisib for DIPG. It says that Onc-201 works by itself for DIPG but usually the tumor develops resistance to it through the P13K pathway. Paxalisib targets this P13K pathway so it makes sense to try the combination. They treated 2 patients under compassionate use and both had dramatic reductions in tumor volume, complete resolution of symptoms and extended survival. So they started a trial https://clinicaltrials.gov/ct2/show/NCT05009992 for the combination to use in DIPG and DMG. I will be watching this trial closely.
Impressive results: 64% overall response rate and 91% clinical benefit rate for pediatric low grade gliomas. What makes this even more impressive is that there is very little research for this tumor type, which is the most common pediatric brain tumor type, and there are no approved treatments or even a standard of care for this type of tumor. Best yet - it is an oral drug and reasonable toxicity profile.
I think focused ultrasound is going to make a major breakthrough in the treatment of not only brain tumors but many brain diseases. There are many different ways to use it. We have video in our video library about focused ultrasound and the many ways it can be used. There is a new clinical trial that may be one of my new favorites for Glioblastoma and DIPG involving 5-ALA and focused ultrasound to kill the tumor.
We had scheduling trouble so recorded the webinar off line and posted it to our website. We set up a place in our discussion forum (there is a link right above the video) to ask questions and the speaker will reply! This is an important webinar and you should consider GammaTile when you are going to have a brain tumor surgery for a brain met or a primary malignant brain tumor or a meningioma. See the webinar for details!
Promising results from patients with unmethylated Glioblastoma who only had a biopsy or partial resection.
This is the life story of Dr Linda Liau! She is one of my all time favorite brain tumor doctors - and am proud to say - a friend! She is also on the Musella Foundation medical advisory board and has helped mold the foundation into what it is today!
This article talks about a very large increased risk of developing meningiomas when taking Cyproterone acetate which is used to treat severe acne and excessive hair growth in women and prostate cancer in men. If you take this drug talk to your doctor about a possible screening MRI.
We posted 2 new videos about DCVax on our website. The first one talks about the history of DCVAX and talks about the manufacturing process. Very interesting. The second video explains the clinical trial design and results. They are at virtualtrials.org/dcvax
All of these projects have the potential to make a big difference and all are worthwhile. We are working on funding 2 more projects in the next few weeks - the projects have been approved by our grants committee and are just waiting for us to raise the money to fund them. Donations are badly needed and will be used for these projects immediately. To make a donation, go to virtualtrials.org/donate
This study shows that it is ok to use Optune when you have a shunt!
Excellent review of all of the oncolytic viruses being used to treat Glioblastoma. Of note is the Japan has given conditional time limited approval of one of them: teserpaturev, which is a small trial showed 92% 1 year survival for recurrent Glioblastoma which is unheard of! Can't believe Japan implements conditional approvals and the USA doesn't yet!
This is very scary - about 7% of the time when a parent is told their child has a DIPG (from reading an MRI) the doctor is wrong. These tumors are rare - so most neuro-radiologists do not see enough of them to be experts in it. This is why you need a second opinion on the reading of the MRI. All DIPG and DMG patients should join the DIPG registry. In the USA it is at https://dipg.org/dipg-research/dipgdmg-registry/ and internationally at https://dipgregistry.org/ Both will have experts review your MRI for free and let you have a free consultation with experts. The Musella Foundation helped fund a small part of these registries and consultation programs via our participation in the DIPG Collaborative. We also offer similar services to Glioblastoma patients with our registry at https://virtualtrials.org/xcelsior.cfm
The concept is to try to make currently available immunotherapy drugs work better by changing the tumor microenvironment to enable the immunotherapies to work better. This article is about good results in head and neck cancer, but they approached us about funding research into using this drug for recurrent high grade gliomas and we were so impressed that we quickly awarded them a $100,000 grant to get the clinical trial going! As a matter of fact, one of our medical advisory board members who reviewed the grant application liked it so much, he volunteered to participate in the trial!
This is the Promising Pathway Act that I have been talking about. If you do not know what it is, watch my webinar from last week to understand the implications. It will speed up the search for the cure and get us new treatments in time to help people who have brain tumors now. EVERYONE who reads this should send a letter of support to their representatives in Congress and get at least 10 of your friends and family to do so. I made an easy way to do so: go to https://virtualtrials.org/activism.cfm#/1/ and fill out the form and send it. Should take 2 minutes! There is a chance that the bill comes up for a vote in 2-3 weeks, so the letters need to be sent right now.
