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This trial is trying to find a better way to see the true extent of the tumor. There is a great need for better imaging - a regular MRI is not really good enough - many times an MRI may say progression where there isn't progression or shrinkage when there really is progression.
Dr Greg Foltz was a friend of mine - one of the best brain tumor doctors around, but unfortunately he died of pancreatic cancer last year. This website was one of his last projects, and his work will be carried on by his successor at the Ivy Center for Advanced Brain Tumor Treatment by Dr Charles Cobbs.
This is my favorite program of the Musella Foundation. We help patients who have trouble paying for thier brain tumor treatments. Many patients have told me they would have done without the treatments without our help. Our organization is the only brain tumor foundation with such a program!
I will let you know when it actually closes and when (if) we get more funding.
Ben is an old friend of mine - he is an 18 year survivor of a gbm, and he wrote an excellent book about his thoughts on how to beat a GBM, called "Surviving Terminal Cancer: Clinical Trials, Drug Cocktails, and Other Treatments Your Oncologist Won't Tell You About". He writes a yearly update so that it is always fresh. This is the 2014 update, free for everyone. You can read it without reading the book, but the book is also valuable for the concepts.
Interesting, completely new concept in treating brain tumors.
Although this is for colon/ rectal cancer, we have to keep an eye on what is happening with all types of cancers. This article talks about specific mutations in colon cancer that make the tumor resistant to anti-EGFR therapy and some that actually make the tumor grow faster with anti-EGFR therapy.
As far as I know this has never been looked at with brain tumors. EGFR is a major target for us, and things like that have to be looked at.
This article shows that the prognosis for kids with low grade brain tumors has become much better! 90% of the kids who did not get radiation were alive 20 years later. 70% of the kids who had radiation were alive 20 years later.
However, more research is needed. This study only looked at the diagnosis and if they had radiation or not. What wasn't accounted for is why 18% of kids got radiation. Perhaps they had larger tumors or worse location, not operable, etc.
Metformin looks good, at least in the lab.
I am proud to be a part of this Coalition. The goal is to find ways to speed up the approval process for brain tumor treatments. Currently, it is hard to determine when a brain tumor progresses because sometimes the MRI scan looks worse while the patients are actually doing better. This is called Pseudo-progression and happens frequently after radiation combined with chemotherapy, and also sometimes happens with immunotherapies. On the other hand, Pseudo-response is when the scan looks better and better while the tumor is actually getting worse. This sometimes happens with the anti-angiogenesis treatments.
Because it is hard to tell what is actually happening, the FDA is taking the stance that only overall survival is a valid endpoint for approval of brain tumor treatments. Obviously, that would be the best endpoint to use from a scientific point of view, but practically it brings up a lot of problems compared to using time to progression as an endpoint. It costs a lot more money and takes a lot more time to use overall survival. For patients, if they are randomized to a placebo in a trial using progression as an endpoint, they can sometimes then cross over and get the treatment after progression. If overall survival is the endpoint, it wouldn't make sense to allow this. Bottom line is that more treatments could be developed in much less time and with much less expense if progression is able to be used.
Nice story about DC-Vax and how 1 person can make a huge difference. Without Linda Powers, the trials would have ended
Exciting news.. a $10.8 million grant for brain tumor research! I wish them luck - sounds very interesting
This is an editorial in the New England Journal of Medicine in response to the reports on the 2 large trials of Avastin for newly diagnosed glioblastoma. These 2 trials both showed a small increase in progression free survival, but no increase in overall survival. However, the had opposite results in quality of life outcomes. Confusing, but the author brings up some good points on how to proceed from here.
This is a fascinating new approach. Instead of targeting one or two specific pathways that drive tumor growth, this one covers over 20 pathways. Hopefully it will not only work, but will also be much harder for the tumor to become resistent and evolve around it!
With the design of this trial, we should know pretty quickly if the concept works. It is for newly diagnosed high grade glioma patients, and is only being done at the Cleveland Clinic in Ohio. IF this shows good results, I am sure it will quickly expand to many major centers.
Amazing results with such a seeminly easy procedure... but of course the standard warnings apply - it is a small group of patients and they only follow them for the first year. But interesting to watch
The Musella Foundation is part of this! We are trying to make it easier and quicker to get new treatments approved, while maintaining safety.
This is an interesting trial - hope they can work out the problems and get it going again.
I am sending this out again as we need more people signing! We have about 2,600 people who signed already - which is the most I ever had for any petition involving brain tumor advocacy! However, we have another week to get more, and we can make this overwhelming! This news blast goes out to 12,000 people. IF you are reading this and didn't sign it, please do so now! Even if you aren't a fan of this particular treatment, the concept that Medicare could deny a treatment that was approved by the FDA and listed as the standard of care by the NCCN guidelines should terrify you.
We need help with raising money for brain tumor research!
This is an exciting new vaccine trial - just opened this week for recurrent glioblastomas.
