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Displaying Stories 1 to 20 of 6,237
10/12/17 Fake Blogs: Warnings About Medical Advice from Online ‘Experts’
This is the greatest benefit of our online support groups. We have people who have been through everything, and have researched everything. It is a place where you can boucne ideas off of others instead of just finding random medical advice on the internet. It is impossible for someone who was recently diagnosed to understand the difference between real and fake news. They so much want to find a cure that they may be easily mislead by unscrupulous people. Actually, some of the people promoting these cures are good people who actually believe in it - because they do not have the background to understand how science works. An example: a relative was fighting a gbm and went through ups and downs. One down (after her 3rd course of radiation) was so bad we thought it was the end. She could only eat lemon ices. Had trouble chewing and swallowing anything else. And she had a miraculous recovery. In her mind, it was due to the lemon ices and she was telling people to eat lemon ices. In reality - the down was caused by damage and swelling from the radiation, which she recovered from. It is all in the point of view.
The best online support group for brain tumor patients is the braintumor treatments group at https://virtualtrials.com/braintumor-treatments.cfm
10/10/17 Medicenna Presents Clinical Data on Initial Experience from Ongoing Phase 2b Study of MDNA55
They did not say how the patients did, but they did report that they were able to deliver the drug to the correct place in a higher percentage of the time than in previous trials. That was the big problem with previous trials involving convection enhanced delivery. In the first such trial, the PRECISE trial, it was found that most or all of the patients did not get the drug to the correct place - which didn't give the drug a chance to work - so the trial failed. More recently the Tocagen trials have used CED and have vastly improved the ability to get the drug where it needs to go. Hopefully this is another step toward getting the drug to the correct place 100% of the time.
(Disclaimer: Medicenna is a sponsor of the Musella Foundation)
10/07/17 Many new cancer drugs don't save lives
What these people do not understand is that for the hard to treat cancers - like glioblastoma, the cure is most likely not going to be a single drug. It will be a combination of several treatments. However, we can not easily test the combinations until the drugs are approved. The huge failure is they are not tracking the results. I feel the only way to home in on the ultimate cocktail is to track all cancer patients - the treatments they do and the outcome. Without that data we are doomed to failure.
09/29/17 I’m dying of brain cancer. I prepared to end my life. Then I kept living.
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%)
Displaying Stories 1 to 20 of 6237