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This is a fun way to raise money for brain tumor research. Part of the proceeds goes to the Musella Foundation!
Good project, but I disagree with their conclusion. They found that 25% of the time, the methylation status changes between the first and second surgery. They conclude that it is insignificant and we shouldn't bother testing the second time as it provides no useful information. They are correct for now, but that should change very shortly as there is now a drug in clinical trials that can work on unmethylated patients. This makes the methylation status very important to determine, and for those 25% of patients with the changed status, it can be a life altering test.
This is a hot topic. Some researchers are reporting 100% of GBMs have cytomegalovirus. Other researchers are reporting none have it. I would love to see a roundtable discussion with both groups getting together, discuss the methods they use, and finally figure it out. It has profound consequences. Some early results of targeting CMV in small trials has showed some success, so I lean toward the group that says there is CMV in GBMs. More research is needed.
This is the polio vaccine treatment for brain tumors that was covered in 2 60 minutes episodes. Very exciting. And I am so proud to announce that the Musella Foundation played a role in getting this trial started for children aged 12-18. The clinicaltrials.gov listing names us as a "sponsor and collaborator"!
It should open soon.
General consensus is that Optune is now the standard of care for newly diagnosed GBM patients, and a good option for recurrent GBM patients!
I am sending this out again as they still have a few more spots open. It is an easy way to make $125! We heard back from some of our members who tried it and they did get the money, and we also got a donation from them.
One of my favorites neuro-oncs is coming to the USA. He twice changed the standard of care for GBMs. Hopefully he will have more resources at Northwestern to speed up the search for the cure. I welcome him and wish him luck!
This is very exciting news. I have always felt that it is almost criminal that most patients do not have access to treatments like this. They have shown that the treatment is safe, and early results show impressive results - at least a doubling of average survival with some patients still doing perfectly for a long time. This breakthrough therapy designation will speed up the process of approval. It opens the possibility that FDA approval could come based on the phase 2 trial which has completely enrollment and results should be available within a year, which means that FDA approval might be possible by the end of next year. Unfortunately not soon enough for anyone who has a brain tumor now. We still have to work on ways to make it available now to people who need it - possibly using compassionate use or the right to try laws.
Unfortunately, this trial failed. It may have failed because the vaccine was started too late - at the time of recurrence. It makes a lot more sense to try it for newly diagnosed healthier patients. Adding in a checkpoint inhibitor should also help. Lastly, with other vaccines, the early readings of the trial did not look good, but as time goes on, there was a small group of patients who do well for a much longer time than expected.
This is a survey from a market research group. If you participate in a phone call, they will send you $125, and the Musella Foundation also gets a donation! This is only for GBM patients or people who care for a gbm patient.
Let me know if you participate!
Exciting. Early trials of the vaccine looked good.
Unfortunately, the trial failed.
I have talked about Val-083 a lot over the last year. The trial is finally open. This is a great option for recurrent GBM patients with unmethylated MGMT.
This is an open label trial - which means we should be able to find out how good it works quickly. Hopefully by the end of this year.
There is no mention of why there was a hold in the first place. It makes no sense to me that they have to wait for 233 people to die before they can analyze the data. If we ever have a cure, these methods insure that we will never see it because the trials would never end.
This is a blog post from the chairman of the company that makes Val-083. I think this trial will accrue patients faster than they predict as the early results are impressive and there really are not many competing trials looking for this patient population: Patients with GBM who have failed Avastin and have unmethylated MGMT. Worth looking at this trial.
This is an international collaboration to try to find the cure of DIPG. DIPG is a rare brain tumor that mostly affects children. Since it is so rare, no one institution has enough patients to figure out the answers we need to cure this devastating disease. By working together, it will greatly speed up the progress.
The Musella Foundation is mentioned in the article as one of the funders!
These 2 new approvals should help make brain tumor surgery safer, and also may turn some inoperable tumors into operable ones!
