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The FDA is always conservative when it comes to the health of the public. Sometimes too conservative. They report that there is probably no link between cell phone use and cancer. I tend to agree with them.
This mutation is a bad sign if present. Most DIPG patients have it, and some GBM patients have it. Average survival in an adult Glioblastoma is usually less than half as long as those without it. Luckily, there are a few treatments in the pipeline that target this mutation. ONC201 is one of them - it is in trials for both adult and pediatric brain tumors with this mutation. Too early to tell how it will work but I do know of a few people who did well with it. If you have this mutation but do not fit any of the trials, there may be other ways of getting it. Contact us for help.
This is not in brain tumors yet, but this may be the most exciting news in years. This team has previously invented Rituximab, which is one of the most important cancer drugs ever invented, so they have the experience to do this correctly and quickly.. I am trying to see if we can get it tested on GBMs and/or DIPG.
JAMA is one of the most respected journals. The conclusion: Considering the net clinical benefit, our HRQoL (healthcare related quality of life) data support the addition of TTFields to standard therapy in patients with glioblastoma
This scholarship is for students in the Chicago area affected by a brain tumor.
I sent this out a few weeks ago.. They need just a few more patients.
This drug is in clinical trials now for recurrent anaplastic astrocytoma. This article reviews all of the data on over 500 patients who took the drug. Looks best for anaplastic astrocytoma, where there was a big improvement in survival!
Disclosure: The company that makes this drug is a sponsor of the Musella Foundation
This is an important trial for patients who have this mutation. Check your pathology report for the H3 K27M mutation, or if your child has a DIPG and did not have a biopsy - they most likely have this mutation.
This sounded like a great idea, but unfortunately it did not pan out in this study. That is why we can't just go by theory - it has to be tested in trials.
This is from the people at Novocure. These meetings are a perfect introduction to Optune for brain tumor patients thinking about trying it or those who are using it!
This may be groundbreaking.. We just need a good drug to use.
Very cool video of a new tool for brain tumor surgery. Warning - very graphic.
I know nothing about this specific treatment, but it raises a lot of red flags. They refuse to publish results. This could mean one of 2 possibilities:
The treatment doesn't work - so if they publish results, patients would stop going to them and stop giving them $250,000 a treatment. OR - the treatment does work, and by not sharing the results - they are literally killing thousands of patient a year who could benefit from the treatment, if it really did work. Either way, not good.
If it really worked on pediatric DIPG, it would be simple to prove, since the standard treatments do not do so well.
This is an exciting new type of treatment. I will be watching it closely!
There is a huge unmet need for more treatments of this rare pediatric brain tumor. Glad to see a new clinical trial! I wish them luck.
This is only for patients (and caregivers) where the patient was diagnosed with a GBM in the last 15 months. If that fits your situation, please take the survey. You will get $75 for your time, and a donation will be made to the Musella Foundation. (If you do the survey, let me know).
Very interesting. In our virtual trial, we have 10 glioblastoma patients who tried the combination and they did a lot better, on average, than those who took Temozolomide without Metformin.
This article is a little complicated to follow, but it may lead to a breakthrough. Excellent work.
This is a trial for recurrent glioblastoma patients who have failed Temodar and Avastin. There is another trial of Val-083 for newly diagnosed MGMT unmethylated patients. Val-083 is a chemotherapy similar to Temodar but works at a different location on the DNA of the tumor cells. It should theoretically not be affected by the MGMT status and may work even when the tumor is resistant to Temodar
It is very sad if true.
