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This is a common topic of conversation. My views are that assisted suicide has a place - but most consider it way too early, just like this man. You get diagnosed, read about the horrors of the diagnosis on the internet and give up. But what is missed is that some people do beat this. There is progress every week. Just this week, we published 2 articles showing major gains: adding CCNU to Temodar upped the average survival to 46 months.. which means half of the people lived longer than that! And the long term results of the Optune trial showing that the 5 year survival rate, which was stuck at 5% for the last 100 years or so, is now 13%. (Still bad, but a lot better than 5%)
This study shows an amazing increase in survival by adding ccnu to Temozolomide. These treatments are already available and may be worth asking your doctors about now.
The 5 year results for Optune just came out and they were unbelievably good. This is a large study in newly diagnosed GBM patients so the results are significant. Bottom line: 5 year survival rate was 13% for the Optune (plus Temodar) group and only 5% for the Temodar alone group. That is a major step forward.
This is one of the more exciting experimental treatments in the pipeline. We (the Musella Foundation) has funded a small part of it!
I agree completely. Advanced math is going to be the key to finding the cure. I think the path to the cure is having all patients tracked in the virtual trial registry, and analyzing the data to find the best combinations. (Along with getting early access to experimental treatments)
This is why we are always telling our patients to seek care at a major brain tumor center. You need experienced people taking care of you. I cringe when people tell me they are being treated at a small community hospital. Many times when staff at a community hospital calls us to ask about our copayment assistance program and we explain the covered treatments, they say "what is Optune?". You do not want to be treated at a center that doesn't keep up.
For GBM patients with unmethylated MGMT, the standard Temozolomide has a much worse chance of helping. This may be an alternative. It works similar to how Temozolomide works, but at a different spot on the chromosomes so it is not affected by the MGMT repair enzyme.
Ben Williams is a 22+ year GBM survivor who wrote an excellent book on his thoughts on how to approach a serious diagnosis. The book talks about a lot of treatments - so it is out of date as soon as it is published. So he puts together an update every year to keep it fresh. Starting last year, our medical editor, Stephen Western, has taken over the updates - with Ben's approval of all changes. We host these updates on virtualtrials.com as a free service! It is one of the more important articles on brain tumor treatments. This years update is 138 pages!
We discuss this on the braintumor treatments online group: https://virtualtrials.com/braintumor-treatments.cfm
This is about our proposal to speed up the search for the cure. They mention there is a legal problem we are working on that and it appears that will not be an issue at all - our proposal could be implemented under current laws. If interested, we are discussing it in the braintumor treatments online support group at https://virtualtrials.com/braintumor-treatments.cfm
Interesting new approach. Will be watching this closely!
This sounds exciting - it is a new target which is not usually found on normal brain but is found in GBM cells - especially cancer stem cells
People have no idea what our brain tumor patients and their loved ones are going through.
This looks interesting and needs further study.
This is only in 1 patient but worth keeping in mind if you have a CNS lymphoma that is not responding to standard treatments. Hopefully they will eventually be able to use this technology for the more common brain tumors!
Orbus Therapeutics launched a new website for their clinical trial of oral Eflornithine (plus lomustine vs. lomustine alone).
Disclaimer: Orbus Therapeutics is a sponsor of the Musella Foundation.
This is for anyone thinking about using Optune. It is a lecture about the treatment, and there is a patient using the treatment that you can talk to. It is for patients and caregivers.
This may lead to a breakthrough in the treatment of most cancers!
This vaccine showed very good results in early trials!
This is the type of effort needed to make headway in the fight against cancer (and birth defects). The Musella Foundation funded early work for this project which led to the big NIH grant which is making it a reality!
