Sponsored by
Our friends at the Chad Tough Foundation are in a contest with ESPN. Whomever gets the most votes over the next 10 weeks gets $100,000 for their charity. It is free to vote but you need to sign up to espn.com. You can vote every day.
This is one of the more important projects of the year. I went to a seminar last week where Dr Resnick demonstrated it. The system has amazing capabilities already. You can have the child's brain tumor sample analyzed and uploaded into the system and it will figure out which are the most important mutations driving the tumor growth and which drugs are available or in trials which may be useful against this tumor. You can see how your tumor compares to all of the other samples with your tumor type.
The Musella Foundation gave Dr Resnick a grant last year to help add and analyze DIPG samples with this system!
This was a surprise. Nuvigil (armodafinil) is a drug approved to treat excessive daytime sleepiness associated with sleep apnea, narcolepsy and shift work disorder. It is similar to Provigil which although approved for the same sleepiness, has been used for many years off label to treat fatigue from brain tumors and brain tumor treatments. Nuvigil is an enantiomer of Provigil.
This is a tiny study, but it shows that a linear accelerator is just as effective as the Gamma Knife - which is what we knew all along.
I love this type of project. These researchers tried adding the drug valganciclovir (Valcyte) to the treatment plan for recurrent gbm patients who were using Avastin. The concept behind this is that most or all GBMs have a virus in them called Cytomegalovirus. (Some researchers disagree and say NONE of the GBMs they tested have the virus). It is not known if the virus triggers the tumor to form, or if it makes the tumor more aggressive, or if it is just a bystander and doesn't affect the tumor. Valcyte is an oral antiviral drug which slows or stops the virus from reproducing. This study (although it is too small to be considered proof) shows that adding Valcyte increases overall survival and progression free survival. This implies that the CMV plays a role in making the tumor grow.
Using it in combination with Avastin was a great idea, since Avastin also slows down the tumor growth using a different pathway (VEGF). I think that hitting either pathway alone allows the tumor to find a way around the treatment, but hitting it on multiple pathways may be the answer. Perhaps adding 1 or 2 other treatments, hitting the tumor from another pathway, may make even a larger difference.
Photodynamic therapy for malignant brain tumors involves giving the patient a dye right before surgery and then shining a laser light at the tumor at the time of surgery. It has been approved in Japan and this article shows that it may increase the time to progression, at least in the treated area, but a lot. There was no control group so we don't know for sure but compared to historic controls, it looks pretty good.
As far as I know, the clinical trials for photodynamic therapy of brain tumors in the USA are completed and we are waiting for the results.
I do not think this was the best way to set up the study. The better way of doing it would have been to start Optune a few weeks after radiation is over, and perhaps try Avastin in a pulse dosing form - either as newly diagnosed at the same time you start the optune, or at the time of recurrence. Withholding Optune from a newly diagnosed patient for the purpose of entering a trial like this sounds unethical to me.
It shows a lack of understanding of how Optune works. It is a slow, gentle treatment. The time to start it is not when you have a recurrence as it needs a few months to kick in. The effect of slowing tumor growth starts immediately but it takes time before the tumor starts to shrink. The trial using it for newly diagnosed patients did much better than the one that started at recurrence.
Having said that, the results show that Optune does help when used this way, but I would like to see more trials using it the correct way. For those that missed out on the opportunity to use it when newly diagnosed, this shows that it is worth trying at the time of recurrence.
Great news.
Now that the 3 largest private health insurance carriers in the USA cover Optune, the rest should follow suit soon! This is a major victory in the fight against brain tumors. We thought the hard part was going to be getting FDA approval because it is a completely new type of treatment, but that actually was easy since the data supported it. Once that happened, I assumed patients would be able to just get it but the timing was terrible. Insurance companies have just started fighting back against expensive treatments and started denying all new treatments as a way of saving money until they are forced to pay for them. It was a long, hard battle but the people at Novocure persevered and won the battle with the private insurers.
Next up is Medicare. I had multiple meetings with Medicare and they are getting close to approving payment. The people I met with at Medicare understand that brain tumor patients need this treatment and they are trying to find a way to pay for it. Having the majority of private insurance companies paying for Optune, along with the recent publication of data in the Journal of the American Medical Association, should allow patients to appeal Medicare rejections successfully. IF you have a problem with a Medicare rejection, call me at 888-295-4740 and maybe I can write a letter for you to help with the appeal.
This is very exciting. They found a way to target the EGFR in tumors and not in normal tissue. There are a few trials going on now for this treatment. Check virtualtrials.com for details.
Excellent result. For the group with total resections, this increased the chances of being alive at the 3 year point from 6% in the control group to 32% in the gene therapy group. Amazing.
Please help with this if you live in Washingotn State.
The "Right To Try" movement is taking over the country. It started 2 years ago and already about 21 states passed this bill.
Discuss it in the braintumor-treatments online group! (virtualtrials.com)
Bottom line is don't watch the stock prices for evidence on how a trial is going. The doctor said that all patients were doing better than expected. That has been happening with every trial, not just dcvax. People doing the standard care today are doing better than they were many years ago because doctors are getting more experience and making surgeries safer and more complete, radiation is safer and better targeted. They use more Temodar than they used to and now use Optune, Avastin and older treatments in better combinations. And the patients in the control group are getting treated by the best brain tumor centers in the world - so they would be expected to do better than patients who are treated at smaller community hospitals.
This trial is blinded which means the doctors do not know which patients are adding the vaccine to their treatment plan so they won't know how much better the vaccine is than the control group until all data is analyzed at the end.
I take it as a positive: people are not dying faster, which means the vaccine is not hurting and causing major safety problems. The negative for the trial is that it will just take longer to get to the end if everyone does better.
Very scary. The point is that brain tumor surgery should only be done by experienced neurosurgeons.
Sounds like Biden might really make a difference. He did miss an important segment - he left out "brain tumor organizations" from the list of groups he wants input from. We (not just the Musella Foundation, but most of the other 100+ brain tumor foundations) have a unique perspective: We have only the best interest of patients at heart and great ideas to really speed up the search for the cure.
Throwing money at the problem using the same old system will help, but I do not think that is the fastest way to the cure. A new system needs to be implemented. The current system discourages collaboration and data sharing. Individual doctors have to fight and waste a lot of their time getting grants and doing "safe" projects that will enable them to publish papers and keep their jobs. This has to change to spoeed up the system.
These people are trying to create a movie about brain tumors and are asking for help - they need patients and doctors to volunteer to be interviewed..
We gave out $230,000 last month, which is way more than usual and our funding is used up. I will let you know when it reopens.
Sorry,
I frequently hear how people with brain tumors "look great" and other people do not understand that brain damage sometimes isn't obvious - but it is very real. Especially when it come to disability claims.
