This is our #givingTuesday appeal! The bottom line is that we have helped a lot of brain tumor patients directly - not only with our compassionate use program and copay assistance program, but by offering treatment suggestions, referrals to major centers and clinical trials, offering education via our online forums and our Brain Tumor Guide For The Newly Diagnosed, helped speed up approvals and funded a lot of quality research. Our programs are critical to speeding up the search for the cure and to help patients deal with a diagnosis of brain tumor. We offer all of this at no cost to the patient, so we need YOUR help. We are only limited by funding. We have projects on the back burner just waiting for funding. We need $250,000 by the end of this year just to cover our compassionate use grant. We have plans that require a few million dollars in funding, but every dollar helps and even small donations are appreciated. Check to see if your employer has a matching grants program!
New videos added to Virtualtrials.com We added 2 new videes to our video library. This is the start of a project to make it easier to understand the clinical trials listings on our website. Instead of just a jumble of words, you can click on the video link and have an explanation of what is involved in the trial, how it works, early results and more! You can discuss them in our new discussion forum!
The Conversation I went to a lecture about this at the Society of Neurooncology conference this last week. Of course we want to find the cure and fight hard, but there comes a time when it is unwinnable and it is time to stop. There is a very hard conversation to have with your family and health care team before you get to that point. This video explains it better than any other I have seen. It explains the choices you have and how you can let the team know how you feel. There is no right or wrong decision - it depends on how you feel about the topic, but it really needs to be thought about BEFORE you need it.
Novocure Announces 43 Presentations on Tumor Treating Fields at 24th Annual Meeting of the Society for Neuro-Oncology There was a lot of research on Optune presented last week at the SNO meeting! You can see the list of abstracts when you click the link below.. the abstracts are available on the Neuro-oncology website at https://academic.oup.com/neuro-oncology/issue/21/Supplement_6 you can search for the abstract number from the list of presentations, but note they reuse the abstract numbers from year to year so when you search for a presentation, you get a list of results. Look for the year 2019!
highlights:
Using Optune at the same time as radiation is now possible. Too early to report results but it was safe.
Adding Celebrex or a checkpoint inhibitor or Avastin or Lomustine to Optune helps somewhat! We need to find the best combinations.
Val-083 for unmethylated GBM Very good results, but these are small studies. In the newly diagnosed group, 7 of 15 patients had a complete response. This is with unmethylated MGMT patients which is a much worse group than methylated. The data on the recurrent GBM is not available but they describe the trial!
It is possible that Val-083 should be used instead of Temodar for MGMT unmethylated patients. Val-083 is similar to Temodar - it is a chemotherapy (but IV not oral), but works at a different part of the DNA strand so the MGMT repair enzyme can not undo the damage like it does with Temodar. (A GMB patient with unmethylated MGMT produces a lot of the repair enzyme, making Temodar almost ineffective).
