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This will allow Optune users to see their usage data. Very important as it has been shown that the higher compliance rate the better the patient does. Over 90% is perfect but anything over 70% helps. It will be available soon!
This is a major breakthrough in finding the best treatments for a patient. They use a new test which can predict if your tumor is going to respond to Temodar (and a handful of other drugs). The important point is that there are some patients with unmethylated MGMT that are predicted to respond to Temodar even though we thought these people had a very little chance of responding. And they did respond. There are also cases presented where patients with methylated MGMT were predicted that there tumor would not respond to Temodar and they did not respond.
Gleostine, also known as CCNU and Lomustine, will no longer be covered under Medicare. The drug company does offer an assistance program at http://www.nextsourcepharma.com/
and there are discount coupons available on Goodrx.Com
But this type of problem is not acceptable. The way drugs are paid for has to be completely overhauled. Gleostine is one of the oldest drugs. It is only going to get worse as each new generation of treatment comes out, they will be exponentially expensive. Unless we make changes now. The Promising Pathway Bill should put a brake on the price increases.
Unfortunately this trial failed to show any survival benefit. We had high hopes for this drug Veliparib, which is a PARP inhibitor that does cross the blood brain barrier. We need better treatments for a glioblastoma with unmethylated MGMT as the overall survival for both the experimental and treatment group was less than 13 months. We are still hoping that the experimental treatment Val-083 which is also in trials for unmethylated Glioblastoma shows better results.
This will be a live event. Should be fun and will raise money for brain tumor research!
The Japanese version of FDA granted approval of this new treatment for Glioblastomas! The clinical trial had amazing success for recurrent Glioblastoma. We are trying to get access here!
I wrote this Op-Ed about the Promising Pathway Act. It is worth a read. We will be launching a letter writing campaign as soon as the House version of the bill is ready. The senate version was introduced a few weeks ago.
Very interesting concept. They did a mathematical model of numerous biomarkers to try to figure out which is best for an individual patient with newly diagnosed, methylated MGMT Glioblastoma: Temozolomide, Lomustine or the combination of the 2. In general the combination was best for most but there are cases where one or the other drug alone was better than the combination. Theoretically, they could predict which path to take, improving the effects of chemotherapy, and in some cases, minimizing unneeded side effects. It has to be tested in patients to make sure it works, but this is the type of research we need. Figure out why and in which patients treatments work instead of blindly using the same treatments on everyone.
They announced an increase of 3-4 months in median overall survival. That sounds like nothing but for DIPG it is significant. It is very rare for a DIPG trial to show any benefit. This could be the start of major progress against DIPG as part of a combination of therapies.
These 2 grants are exciting.
We did a webinar about the Gallium Maltolate project. See https://virtualtrials.org/video2021.cfm?video=202105 This is a new approach to treating brain tumors. They are trying it on Glioblastomas but it may work for most cancer types - not just brain tumors.
To be honest, I never heard of uORFs before this grant application came in. I had to research what it is, and found that they regulate gene expression and thereby can influence how much of a protein is made by the cell. Dysfunction of the uORFs may be the underlying cause of many cancers, and very little research has been done into the connection between uORFs and cancer. The researcher chose to work on Group 3 Medulloblastomas because it is known that these tumors rely heavily on translational regulation. If this project is successful it may lead to breakthroughs in all cancer types.
We have worked with this organization for a few years. They have a survey for Glioblastoma patients and / or the caretakers, where they will pay you to participate. They also donate to the Musella Foundation! Please participate if you can!
We had high expectations for this treatment, and were shocked when it failed the clinical trial. this article may explain why and opens the door to try again using a way to get the treatment into the brain - perhaps with focused ultrasound, or other ways around the blood brain barrier.
I will be speaking tonight about the Promising Pathway Act. It is difficult to get across how important this bill is in just a short text blurb, so I am going to give it the treatment it needs. I will start with a little history of the Musella Foundation, and the reasoning for our various programs, and how it all ties into the Promising Pathway Act. This bill is a game changer. It will quickly impact the lives of brain tumor patients if passed. I thought the same about the "Right To Try" bill, which passed but turned out not to make much of a difference (except to the few lucky enough to be able to use it!). We looked at the drawbacks of the Right To Try law, accelerated approval, as well as the expanded access pathway and helped to create a new pathway that solves the problems and hopefully can allow us to make quick progress in the fight against brain tumors - while increasing the amount of research conducted, getting access to more treatments and holding costs down!
This may be a breakthrough in the treatment of Glioblastomas. Teserpaturev is the new name for the treatment that we used to call G47 Delta. In the clinical trial for recurrent Glioblastoma, they had a 92.3% one year survival rate, compared to historical rates of about 15%! It should be available in Japan soon and we will work on getting it here!
Of course 1 case report doesn't prove a treatment works but it is fantastic to see a long term survival with just one injection of CAR T cells!
I think this is the perfect combination. The original phase 3 trial of tumor treating fields (TTF) for recurrent glioblastoma did not show a benefit because the patients were too far gone - TTFs are slow and gentle, and need a few months to turn the tide and shrink the tumor away. Most patients in the trial did not have the time for TTFs to work. GammaTile is implanted at the time of surgery, and slowly releases radiation to the tumor bed. It possibly could buy the time needed for the TTFs to kick in. I will keep an eye on this trial.
Metastatic brain tumors are about 10 times more common than primary brain tumors, but there has been a severe lack of research in these tumors. In the past, once you had a cancer that spread to the brain, it was considered over and impossible to really do anything for it. Times have changed and now that we have better ways to control those primary tumors, we also have better treatments for the brain mets. Some of these also apply to primary brain tumors. Our special guest speaker today is Dr Tawbi, who is the co-director of the brain metastasis clinic at MD Anderson Cancer center!
Most of the funds used for these grants were raised by our National Walks To End Brain Tumors. We had an actual live 5k walk in Florida and a virtual walk in MN. We have 2 virtual walks coming up in NJ and another in UT. See https://walktoendbraintumors.org/ for details. A special thanks to those volunteers and participants who made this possible!
For the grant from our DIPG All-in-initiative fund, some of the funding came from our partners in the DIPG All-In-Initative: The McKenna Claire Foundation and the Prayers From Maria Foundation.
Unfrotunately, this trial failed to show any improvement by adding a Parp inhibitor to the standard treatment for MGMT Unmethylated Glioblastoma. It highlights the need to develop new treatments, as survival was only 1 year in both the experimental group and the standard of care group.
