This is from our friends at Pinpoint Patient Recruiting. They do surveys and interviews to help drug companies learn about the needs of the Glioblastoma patients and caregivers. They give us (the Musella Foundation) a donation, and you get $75 for taking the survey. Everyone wins and you help these companies understand our needs better!
This is the results of the CUSP9v3 trial, and they are impressive. It was not controlled and is relatively small, but for patients with recurrent glioblastoma, the progression free survival rate at 12 months was 50%. This is a combination of older non cancer drugs, along with Temodar. All are easily available and relatively safe. May be worth trying both for newly diagnosed and recurrent Glioblastoma.
We had a good run but ran out of money. We gave out 280 grants so far this year to patients, each up to $5,000 - which adds up to an amazing $1,395,000 (if they all use their entire grant - if not, we reclaim the money and recycle it for the next patients!)
This is the latest version of CUSP9 (CUSP9v3)
This is a very small study so obviously has to be repeated with larger numbers but they have impressive data. Looking at the survival curve for survival, progression free survival at 12 months was 50% which is pretty good. However, of the 5 patients who lived that long, none of them did yet, so there is a tail of the curve that doesn't drop below the 50% survival point.
This is a for a cocktail of repurposed drugs that are easily available, in addition to Temozolomide.
funding 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 separate 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.org/donate
Amazon will donate a small amount to our organization every time you buy something from them! Participating from the website is simple. Just go to smile.amazon.com instead of amazon.com. You username and password will work. Select the Musella Foundation as your charity the first time you use the Smile.amazon.com website and we will get the donations until you choose to stop it. However, if you use the App, they require a little more work. See instructions below on how to turn it on, but Amazon turns it off every August and February and you have to turn it back on!
Thanks for helping!
This is the publication of a brain tumor research project that we (the Musella Foundation) funded. It has the best results ever reported for the treatment of this rat model. This is old (published a year ago), but I am including it now because the clinical trial that resulted from it was recently published. See next article!
This is the results of the clinical trial of CED delivery of carboplatin for the treatment of recurrent high grade gliomas. It is based on data from a grant we gave for a rat trial (see previous article). This was funded by our friends at Voices Against Brain Cancer. Overall the results are not impressive. The dose was way too low but the FDA required they start so low and slowly increase it. They started at 1 ug, then upped it to 2ug, then ended with 4ug, and did not get significant side effects. In the rat study, they found the best dosage for rats was 72ug and rats are way smaller than people. So I would like to see this repeated but with reasonable doses.
From our good friends at the IBTA! This is for adult (18+) brain tumor patients only!
This gives an excellent review of Optune with an explanation of how it works, how it might be combined with other treatments to improve outcomes, and basically says it should be part of the standard of care. I agree completely. The arguments against using Optune are discussed and put into perspective. For example, the biggest argument against was that the clinical trials did not use a "placebo" device for the control group. I agree with the authors when they say it is unethical to make a brain tumor patient shave their head and wear an uncomfortable device around without the chance of benefit. I would not refer patients to a clinical trial using such a placebo device control. They also argue that the Optune group used Temozolomide longer than the control group. Duh. The progression free period was longer in the Optune group and both groups stopped Temozolomide when progression occurred. They go on to discuss costs. It is an expensive treatment, and in Europe it might not have the cost / benefit ratio to allow the countries to pay for it but in the USA where life is valued higher, it is worth it. The authors do not mention it but the cost of other treatments being used which had much less benefit are way higher. Bottom line: I feel Optune should be part of the standard of care for newly diagnosed Glioblastoma. Possibly also for recurrent Glioblastoma but only if it is combined with something else.
I have to admit that when I first heard of Novocures' Tumor Treating Fields (which later became know as Optune), I was very skeptical. I knew of old "electrical therapy" treatments that were really scams and I lumped Optune in with that. I was convinced when I met the people who invented Optune and they showed me their preclinical data, and then when I saw the first group of patients do well. I met a few of them and some did very well.
Now along comes another novel therapy - this one uses oscillating magnetic field (OMF) therapy applied through a helmet that patient wears for about 3 hours a day. I wasn't so dismissive this time. I looked at the case report (and it is only 1 patient so you can't tell much), but the tumor volume graph is impressive. It shows a massive growth rate for the 90 days before starting treatment, then with no other treatments, this device quickly caused a big reduction is tumor volume. I would love to see a larger trial of this. It is possibly more convenient than Optune in that you do not have to shave your head, and can take weekends off. Will be keeping an eye on this and I wish them luck.
( Note - this is an older article but it just came up again in my news feed and is worth repeating!)
This combination, tested in a small group of newly diagnosed Glioblastoma patients, resulted in an astounding Progression Free Survival rate of 20 months, and the median overall survival was not yet reached. This compares with historical results of 7.2 months PFS for Temodar and Optune.
This is exciting research because the drug they identified as possibly helping DMG / DIPG is approved for other types of cancers. I want to point out they have NOT yet tried it in DMG / DIPG patients yet, so it is risky. If anyone wants to try it, please sign up for our registry before starting so we can track the outcomes! https://virtualtrials.org/xcelsior.cfm
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.