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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.
We have worked with this company before, and they do pay the $75 to you, and also send a donation to the Musella Foundation!
One of our members wrote a nice book about her experiences with a brain tumor
We gave this researcher a grant previously - that project came out very well. She now needs just a little more money to follow up on it to get enough data to apply for big government grants. Our relatively small investment in her work can lead to a big grant that can take this new treatment into the clinic!
This may have a big effect not only on our organization but all charities.
Of course I am biased, but I think this is the fastest way to finding the cure for brain tumors!
My knee jerk reaction is that this is insane. They did not spend a penny on research and development for it - that was done 40 years ago! However, without this company making it, we wouldn't be able to use it. Nobody would be making it. If anyone else wanted to make it, they would be able to, and the price would go down. Medicare (which is probably the largest payer for this drug) paid about $600,000 last year for this drug, at the high price. Back when it was cheaper, they used to spend $160,000 a year on it. That isn't enough money for a drug company to take on it on. Even for a generic drug, it requires some people to work on it, manufacturing and distribution costs, advertising as well as insurance in case it causes problems. I can see how a drug used in rare instances can be this expensive.
This is my favorite trial for newly diagnosed inoperable glioblastomas! They had some impressive results in the early trials - particularly among inoperable tumors.
