This is a new test that will be available starting today! It can acurately predict which of several drugs would work best for your tumor, including Temodar. The research has shown that in some Glioblastoma cases patients with unmethylated MGMT (whom we assume would not respond well to Temodar), this test predicted that it would work, and those patients did well. On the other hand, some patients with methylated MGMT (whom we think should do well with Temodar), this test said they would not respond and they did not. It can also tell if Lomustine alone is a better choice than Temodar alone, and that the combination of Temodar and Lomustine is sometimes worse than one of them alone, and in other cases is the best choice.
The test requires live tumor cells so you need to set it up a few days before your surgery so the surgeon can request a test kit. (Or if he already has the test kits, you just need to request the test). I do not know the cost and if it is covered yet, so ask your doctor to check for you. I will have a webinar about this test on August 22nd. More details as it gets closer. If you do the test, please tell us about your expeirence.
This is the new classification of brain tumors. It is very confusing and very different. However, it is way more specific. Previously, they changed Glioblastoma Multiforme into 2 groups: Glioblastoma, IDH mutant and Glioblastoma, IDH Wildtype. Now they changed it so that the only tumor that can be called a Glioblastoma has to be IDH wild type. If the tumor has an IDH mutation, it is not longer considered a Glioblastoma (or a Glioblastoma, IDH Mutant - which is now removed from the classification scheme.) This makes sense because the tumors act very differently and you really can not group the two together in a clinical trial and expect it to make any sense at all. In general, patients with what used to be called Glioblastoma multiforme with an IDH mutation live twice as long as those without the mutation. (31 months with IDH mutations, and 15 months without). They also changed from using the roman numeral system to arabic numbers. These are much easier to read and less prone to error! So a Glioblastoma is now consider a grade 4 instead of IV. And it has to have wildtype IDH.
They tested Opdivo (Nivolumab) with either the standard dose of Avastin (Bevacizumab) or a lower dose of Avastin for recurrent Glioblastoma. The combinations really did not do that well, but they found that the lower dose of worked just as good as the standard dose. This is important because this is an expensive drug. If we could cut the dose we not only save money but possibly minimize side effects.
Some patients did benefit, but the median patient really did not. They need to figure out which patients benefit and why, as well as which patients would not benefit and why.
We awarded two more brain tumor research grants: the first grant is the 3rd year of a special project by Dr Eric Wong which examines the relationship between field strength at the tumor site and outcome. This can eventually result in better ways to use Tumor Treating Fields, and figure out why it works so good with some people and not others.
The second grant is a collaboration between the Musella Foundation and Dragon Master's Foundation for a project by Dr. Seyed Ali Nabavizadeh which looks at better ways of using Pet and MRI scanning to evaluate pediatric brain tumors. The currently used methods on adults do not translate well to the pediatric tumors, especially those of the brainstem and midline structures.
We thank the donors who allowed us to award these important grants. Some of the funding came from our National Walk To End Brain Tumors, and some came from memorial donations, as well as donations to our organization.
This is extremely upsetting to me. Jace and his family are friends of mine. We went through this journey together. At times it looked like he would beat his disease. He made the most of his time, setting out to help others with this disease. Him and his family have done so much to advance the cause - just so sad that he isn't here to benefit from his hard work. He will be missed. My condolences to the family.
This is another option for tumors of the thalamus. It is only 1 case report but shows that it has potential and there are not that many good other options in this area available yet.
We could use your help to improve the website for everyone else!
The results look promising but it is hard to judge what the natural progression of these tumors would be without the drug. People with nonenhancing tumors with IDH mutations do much better than enhancing tumors with or without the mutation. More research needs to be done, and they probably should have tried to set up a virtual control group - select patients from a database with the same entry criteria who did not receive the drug so we have a frame of references.
This is a confusing study. It goes against what we thought was true about using temozolomide. This study was in anaplastic astrocytomas, and showed that there is very little benefit in using temozolomide at the same time as radiation but there is a large benefit using it after radiation. However, that only applies to certain subgroups. In some subgroups of patients temozolomide did not help at all. We will be having a webinar next month on a new test that should simplify this and better predict which patients would benefit from Temozolomide or other treatments.
Our copay assistance program is now open. If you think you may need help, apply. Never be shy or embarrassed to ask for help. We went through this and understand the financial pressures that a malignant brain tumor can cause, even if you were OK financially before. We are here to take some of the stress off of you and try to make the process easy. If you have questions or any trouble with the application, contact us by using the 'Contact Us' link on the website or call us at 888-295-4740.
If you do use the program, please fill out the anonymous survey on the website. We use that to make the program better and to help raise funds for the program.
We had a webinar about the use of Focused Ultrasound for brain tumors. Go to our video library to view it. This is a non-invasive treatment that can help drugs get into the tumor to make them work better. It may make the difference between a drug helping and not doing anything. Watch the video for details!
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.
This will be a live event. Should be fun and will raise money for brain tumor research!
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.
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.