This excellent article explains why Glioblastomas are so hard to treat - it reviews past history of treatments and suggest a new concept to fight glioblastomas. We (the Musella Foundation) gave the author a grant to study the treatment she talks about! It may eventually result in a breakthrough - although it is at the pre-clinical stage now.
Another great speaker tonight! Dr Kesari is an old friend - he is involved in a lot of cutting edge research including the CAR-T cell trial.
We do not have any more webinars scheduled. If you have any ideas for topics and / or speakers, let me know!
This is one of the most important (if not - THE most important) bill for brain tumor patients ever! It will drastically speed up the search for the cure, increase your treatment options, increase the amount of research being done, and hopefully decrease the cost of treatments!
We will soon ask for your help in supporting this bill. Do not do anything yet - we are trying to figure out how best to help. If anyone has experience in this area, contact me!
Al Musella, DPM
Musella Foundation
888-295-4740
Musella@virtualtrials.com
Great news! This brings the vaccine closer to approval. Early reports showed over a 6 month improvement in survival, which is significant and 23% of patients had tumor reductions. Fast track designation and orphan designation mean the FDA has looked at the data and shows an interest in speeding it up.
This drug is approved for other cancers so it may be available off label, so if the trial reports success, we can use it right away!
What a horrible start to the fundraising year! Last year at this time we gave out 9 grants for $495,000. This year only gave out 2 grants for $59,432 with another $25-50k possibly going to be awarded soon.
However, these are good projects. unfortunately we had to reject a few other good projects. Hopefully things will get back to normal later this year.
Now that patients are living longer, safety becomes very important. At the time Optune was invented, the number of long term survivors was negligible, so we did not worry about long term safety. Now that there is a chance at becoming a long term survivor, safety matters a lot! This was a study of over 11,000 patients who used Optune and they found no serious side effects other than skin irritations which were manageable.
All of the webinars this year have been great - informative, fun and lots of good questions were asked. All had over 1,000 views! Although the topic is pediatric brain tumors tonight, it will also talk about Diffuse Midline Glioma, which is relatively common in young adults as well as children.
GBM Agile is the next generation of clinical trial - where multiple drugs are tested against a common control arm, instead of each trial having it's own control arm. They selected Val-083 to test in one of the arms of the trial. Val-083 is an experimental chemotherapy, similar to Temodar but it works on a different area of the DNA so the MGMT repair enzyme can not undo the damage it does to the tumor. In theory, it should not matter if the MGMT is methylated or unmethylated. With Temodar, if your MGMT is unmethylated, there is a much less chance that it will help. This is probably the best and fastest path to FDA approval for Val-083. I wish them luck.
Tonight's webinar is another great one. Dr Duma is working on a few treatments that may have a huge impact.
We also added another webinar next week - about DIPG / Diffuse midline glioma
Such a sad story. This is a friend of mine. His son died of a medulloblastoma and it was devastating. He got into fundraising for pediatric brain tumor research, and has made some large donations to the Musella Foundation and other research organizations. He had a vison for a huge fundraiser that will make a huge difference. He was going to create a tourist attraction where the profits go to pediatric brain tumor research. He bought the land, and drew up the plans but then ran into an "environmental" group who did not want it to happen. So they protest and sued him and shut down the project for now.
With all of the things going wrong with the world right now, these people pick saving the lives of kids with cancer to protest. Unbeleivable.
We have so many projects that could get done with the funding. We are running a major pediatric research project that may have to close down in about 2 weeks as we do not have the funding. I know of a few promising treatments that are just waiting for funding.
This is a great tool. All Optune users should use it to monitor their compliance. There is a big dose response curve, showing that people who use it over 90% of the time do the best and it is a big effect. See https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6342854/ for details. So 90% should be the target and try to go even higher!
This is obviously too early to tell how it works but it is an exciting new concept and I wish them luck.
I posted this to show that even though we sometimes feel that no progress is being made, we need to remember how bad this disease is and appreciate what we do have. This report shows that the average survival in this hospital in Saudia Arabia (from 2005 to 2015) is only 8 months! They probably picked 2005 because that is when Temozolomide was approved for Glioblastoma, although it was commonly used here in the USA for Glioblastomas since 1999 when it was approved for anaplastic astrocytoma. (My dad used it for a gbm in 1999!). They do not mention Optune, even though it was approved in 2011.
This is an experimental drug - which in this poster from ASCO shows a small trial of 8 patients with newly diagnosed glioblastoma, unmethylated MGMT, who did pretty good compared to what we have seen previously with Temozolomide. This opens a new option for unmethylated MGMT patients, and perhaps eventually in combinations for all gbm (and DIPG and brain met patients.
This next webinar is about a vaccine that looks promising. Bring all of your questions about vaccines and other immunotherapies!
Note that we use Zoom as the meeting room and Zoom has been doing a lot of security updates recently so leave a few extra minutes in case you need to download the latest version of zoom (it might tell you you have to update before joining the webinar). It is simple - just follow the directions - but it may take a few extra minutes and we usually start right on time!
This is the last webinar in our Brain Tumor Awareness Month Webinar series - but we will add more webinars when we find an interesting topic / speaker! Feel free to suggest topics and speakers!
Here are my thoughts on the most important abstacts so far. This is a first pass - I may add to this on our forum!
Let's discuss them in our forum - did I miss any? Let me know. Go to https://forum.virtualtrials.org/ to discuss these!
Some more of what I feel are the most important reports from ASCO 2020!
This is one of many abstracts about Onc201 presented at the Annual American Society of Clinical Oncology conference taking place this week. To see the entire list of Onc201 abstracts, go to: https://oncoceutics.com/oncoceutics-to-present-additional-data-at-asco-showing-clinical-benefit-from-onc201-for-cancer-patients/
This abstract reports on a fascinating finding. Onc201 is an experimental oral drug that blocks DRD2. Tumors with the H3K27m mutation, mostly diffuse midline glioma and DIPG, usually have a high expression of DRD2 so should benefit most from this drug. The research shows that the tumors that respond best to Onc201 have a low level of EGFR and conversely, tumors with a high EGFR do not respond as well. Their conclusion is that EGFR and DRD2 perform similiar functions - so if EGFR is high, blocking DRD2 doesn't help much. My conclusion is that we should try to combine Onc201 with a drug or vaccine that blocks EGFR - perhaps we will have a treatment that most high grade brain tumors respond to.
Disclosure: The Musella Foundation gave a venture philanthropy grant to Oncoceutics and will benefit if Onc201 is ever FDA approved.
This program is a life saver. I started it because both of my family members who had glioblastomas also had problems with the cost of their treatments. The program is funded by donations directed to this program and does NOT take anything away from the money we raise for brain tumor research. That is a seperate fund. When making a donation, you can tell us which fund to apply your donation to and if you want to just fund research, 100% of your donation will go to brain tumor research! You can make donations at https://virtualtrials.com/donate