I love articles like this. Diffuse midlines gliomas are among the worst of the worst brain tumors. Of course you can not make decisions based on a handful of case reports but they do give some hope where there really wasn't much before. Your donations have helped fund this - we gave 3 grants to help get this developed and it is in clinical trials, and there is a compassionate use program open. Ask your doctors about this if you have the H3K27M mutation (sometimes reported as H3F3A), or a brainstem tumor. It is most common in younger people with tumors near the midline of the brain. We will be dedicating part of the proceeds from our National Walk To End Brain Tumors 5k events to this project!
Excellent review of glioblastomas and how to treat them.
Gleolan is FDA approved - it helps the neurosurgeon know what is tumor and what is not while operating. Good work to my friend Dr Schulder!
I was really hoping this trial would turn out well but it failed to meet it's endpoints. This is a different way of using vaccines - it makes a lot of sense. However, they chose to try it on recurrent glioblastomas, which might have been too late.
This looks good for recurrent GBM. It is too small of a study to tell for sure but the survivals compare very well to historical survivals. We need to follow all patients who use Optune to see which combinations are the best, and this opens the door for more research on using Optune for recurrent GBM.
Stay tuned - I will send out another news blast about this issue when the proposed rule is released!
Thanks to those who watched the video on Youtube. I think that helped. Nobody wants to be viewed as advocating for a 2 tiered health system in the USA where 95% of private insurances pay for Optune but our elderly and disabled won't be able to get it. Things like that can happen behind closed doors but not when everything is out in the open. Medicare did the right thing with this process. This was the first ever public CAC meeting for a device - they used to do these things behind closed doors.
These are nice meetings if you are using Optune or are considering it!
We are having a series of 5k fundraisers - visit the Walktoendbraintumors.org website to see Where and When.
I need everyone to watch this video. Ask your friends to watch it as well - all on separate devices so each person gets counted.
You will probably see a lot of negative things being said about Optune. Take that with a grain of salt. The committee is trying to find an excuse not to pay for it and I doubt if any of the committee members have much experience with using Optune. We will point out the good things in our follow up letters!
This is about a new drug delivery system for Parkinson's disease but I see no reason it can't be used for brain tumors. It allows you to do something like convection enhanced delivery but over a long period of time.
This may explain why using Tamoxifen for glioblastomas helped some patients. An old research paper (see https://virtualtrials.com/Tam1.cfm) from 1996 showed pretty good results using high dose tamoxifen for recurrent glioblastomas.
I had a relative who did well with high dose tamoxifen for over 5 years with her GBM, but it's use fell out of favor when Temodar arrived on the scene. Maybe it is time to go back and test this again in new combinations!
This shows what we already assumed: getting treated in a academic center with a high volume of brain tumor patients will result in a better outcome.
From our friends at Tocagen! Sounds like an exciting meeting!
We can not let Medicare deny access to FDA and NCCN approved brain tumor patients. It sets a dangerous precedent.
We have been watching Chloroquine for a while. Some of our long term survivors have been taking it. My thoughts are it might help some other treatments, such as Optune, work better but there have been no trials to prove that. The next best thing is to watch patients in our registry.. If you are going to try this, please register with us before you start so we can see how it works out! Virtualtrials.com/brain
This was written in Japanese and the link takes you to a google translation of it so it is a little hard to understand but it looks like they are reporting 1 year survival rate for recurrent GBM of 92% compared with historical controls of 15%. If that is true, this is amazing. It was a small study but may lead to approval in Japan.