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This may be another option for patients whose tumors are in the corpus callosum.
This is for a new treatment for pediatric brain tumors that have a certain mutation. Almost all DIPG patients have it and some high grade glioma patients have it, especially those near the midline of the brain. Fascinating but highly technical article. Bottom line is that it led to a clinical trial for kids with this mutation.
These are my thoughts on the right to try law. The Senate passed it already and the House is considering it.
This is impressive. After a single injection, they had a complete response to a recurrent gbm, and 20% of the patients did much better than expected - although unfortunately they all died. This is a step forward - it has to be fined tuned: optimize the delivery and schedule of it and see which drugs can make it work better.
I have sent this before but now they only need a few more patients. They already had enough caregivers. If interested, they pay you $75 and give us a donation. (So let me know if you do the survey!)
Unfortunately, this report says there is no effect.
This trial shows why we need to test treatments in kids and not just assume that they will work the same as in adults. This trial compares the standard of radiation and temodar with and without Avastin, for newly diagnosed high grade glioma. In previously reported trials on adults, there was a pretty good increase in progression free survival with just about no increase in overall survival. In this study with children, they found that adding Avastin decreased both the progression free survival and overall survival, and there were more side effects in the Avastin group.
[Disclosure: Genetech is a sponsor of our organization]
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.
