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Interesting new way to open the blood brain barrier.
From our friends at the IBTS. This contains many articles that we were about to put into the news blast, but they already had them, so read them here! Importantly, here are my comments on some of these:
1. The Cochrane review of Avastin: This is a very difficult issue. The evidence is not clear yet for the best way to use Avastin. They conclude that there is not enough evidence regarding overall survival benefit to support it's use for newly diagnosed patients, but they show there is an increased in progression free survival. My thoughts are increasing progression free survival is a very good thing. My first choice would be a clinical trial, but if I couldn't do a trial, Avastin would be on my list of things to try.
2. Registry of radiosurgery patients. This is an excellent tool. ALL brain tumor patients should be registered and watched. We try this with our brain tumor virtual trial but have trouble getting enough people to participate. IF everyone was registered, it would cut years off of the time needed to find the cure. Many patients are trying different combinations of treatments, but nobody is observing the outcomes, this not only allows us to miss the good combinations but dooms people to repeatedly try bad combinations. Insane.
3. DCVax: DCVax is now available in Germany and the UK. This is a very big step foward. I am looking into how USA patients can get it. Right now it looks like they may have to go to one of those countries for a few weeks to have it administered there. Payments may be a problems also. USA insurance won't pay for treatments done outside of the USA and it is not yet available in the USA. We are working on speeding that up also.
4. ICT-107 trial - they will be announcing more results at the SNO meeting next month. I will be there and let you know what they say. They will be starting a new trial for newly diagnosed GBM patients soon.
This is a fascinating new clinical trial for recurrent high grade gliomas. The neural stem cells migrate to the tumor cells, and carry an enzyme that converts a harmless oral anti-fungal drug into a toxic chemotherapy drug only in the local area where tumor cells are. Hopefully this will result in the cancer cells getting killed and minimizing side effects to the noraml cells.
It is a phase 1 trial so there are no results to look at yet, but it is worth thinking about this trial. Click HERE for details on the trial
Ben is an old friend of mine. He is a 19 year survivor of a gbm, and has done extensive writing on the subject. The link will bring you to his page where you can see more of his articles as well. This article on long term survivors explores how rare it is to actually survive so long. May be depressing but it shows the need for more research and to be more aggressive in finding treatments.
This is an interesting trial design - hey tested every combination of temodar and 3 add on drugs... there probably wasn't enough patients to be sure but early result look like adding isotretinoin (Accutane) actually did worse than temodar alone, and none of the combinations did much better than temodar alone. The best was all 3 drugs plus temodar, but not by much over temodar alone.
Thanks to a generous donation, we are able to reopen the program!
This could be very important in the fight against brain cancer. It makes a lot of sense.
This is a free program open to kids with brain tumors. (Up to age 21).
From our good friends at the Florida Brain Tumor Association. This is always a good conference
Cancer care runs very good support groups by phone. They also have a copayment assistance program which is open now to help brain tumor patients pay for treatments.
This is very good news.. first we get access to a new class of drugs - PD-1 inhibitors. Next - the FDA showed that they understand the cancer community's needs and approved this after only a phase 1 trial. This could open the floodgates for FDA approval of new cancer treatments as there are a few brain cancer treatments in the pipeline that will soon be reporting phase 2 results. IF the results are good enough, perhaps we can get them approved without having to wait a few more years for phase 3 to complete.
This also raises the possibility of combinations of treatments such as adding a CTLA-4 inhibitor such as Yervoy and another drug or 2 - perhaps Avastin.
This is an exciting new brain tumor biotech center on Long Island at the Feinstein institute for Medical Research. They are bringing together top researchers to work on finding a cure for brain tumors. This is a unique opportunity to visit the center and learn about their approach. I am on the Patient Advocacy board, along with Senator Patrick Kennedy of "One Mind For Research" and Mario Lichtenstein of "VABC".
For more details on the center, go to: http://www.feinsteininstitute.org/brain-tumor-biotech-center/
Sounds like an interesting approach
The doctor in the article is from Swedish medical center in Seattle, WA, not from Sweden! He asked us for a grant to do this study but it was way too much money for us. We could have helped if the drug company donated the drug but it is an expensive drug. It is approved for viral infections, so it can easily be obtained off label, but some insurance companies do not want to pay for it for brain tumors since the FDA never approved it for brain tumors. And we still need proof that it helps.
There are a lot of new doctors who are certified in the use of this FDA approved treatment for recurrent GBMs.. go to www.novottftherapy.com/ and put in your zip code near the top right of the page to find one near you.
This is a big step forward for development of this line of treatment
Sunitinib is an oral targeted therapy approved to treat cancer of the stomach and pancreas, so it is easily available. The 6 month progression free survival rate was 42%, which is much better than anything I have seen for this type of tumor. The overall survival rates are still not good enough but perhaps this may become another tool to use as part of a comprehensive treatment plan that does much better.
There is a video about this procedure at http://virtualtrials.com/video2012.cfm?video=201202
This is the treatment guidelines from the European Association for Neuro-Oncology Task Force on Malignant Glioma. I completely disagree with them.
For young (up to 70 years old) newly diagnosed Glioblastoma patients, they say the treatment should be: Surgery (resection or biopsy), followed by radiotherapy with concurrent Temozolomide, followed by 6 months of Temozolomide. For recurrent, they say more surgery, more radiation, more chemotherapy or Avastin.
For older patients, they say radiation is optional based on MGMT and performance status.
Here in the USA, the standard treatment for newly diagnosed younger patients is a clinical trial. IF that is not possible, then the standard therapy is the same as the EANO guidelines. The EANO guidelines doesn't suggest clinical trials.
I feel clinical trials are the best way to go, but if not, I would say to follow the standard surgery, radiation and temodar, AND would also do a molecular testing such as the Foundation Medicine test. If they find any mutations in your tumor that are targeted by available drugs then I would add those drugs also.
For Recurrent GBM, here in the USA, tumor treating fields (Novocure's TTF-100A device) are approved for recurrent GBM and is in trials for newly diagnosed. Research has shown that tumor treating fields may be the best treatment for recurrent GBMs. The EANO guidelines do not mention it.
The scary part is that the European governments can use this document to justify excluding payments for treatments not recommended. That makes this a political document - based more on a cost / benefit ratio than based on what is best for the patient.
The only advantage the EANO guidelines have over the USA guidelines is the use of Gliolan, which is a dye used during surgery which allows more of the tumor to be removed safely. It is standard in Europe but not even FDA approved here in the USA yet.
