Matt's Brain Tumor Guide
Braintumor Website

The information presented below is the opinion of Matthew F. and does not necessarily reflect the opinion of the Musella Foundation!

Surviving a Glioblastoma (gbm) Brain Tumor Diagnosis

* Clinical Trials *

On The Cutting Edge Of A Cure

A Clinical trial is one of the final stages of a long and careful research process. Studies are done with brain tumor patients to find out whether promising approaches to brain tumor prevention, diagnosis, and treatment are safe & effective.

The medical community considers it ethical to try unproven treatments (i.e., clinical trials) only after proven treatments have failed or when used in addition to proven treatments, but not instead of proven treatments.

Yet typically, bcnu (carmustine) & radiation are considered the standard treatments for brain tumors. And this "proven" regimen has not produced a great deal of success, in my opinion. Hence, the emphasis & need of exploring the options available in clinical trials.

Keep in mind that the primary purpose of a trial is not to save lives--that is the role of the best standard treatment. Clinical trials are used to determine whether a treatment is effective so that it can be used to save lives in the future. Some clinical trials have just as much chance of causing harm as of helping.

"But for my money [in treatment], I don't want doctors who read journals; I want doctors who write them."

---- Ed Nugent, gbm survivor, 2000

It is my belief, that some clinical trials actually increase the chance of survival over the best standard treatment. Of course, this is something that you should discuss with your physician(s) before adopting any form of treatment regimen.

Brain tumor patients can benefit from clinical trials. In treatment trials, for example, participants receive high-quality brain tumor care -- and will be among the first to benefit if a new approach is proven to work. Through a process, called informed consent, you will learn about the study's treatments and tests, and their possible benefits and risks, before deciding whether or not to participate.

NOTE: Because of the need to be able to derive unbiased scientific results from trials, patients that have had previous treatment may be ineligible for certain trials. For example, if you have had radiation and are looking at getting into the chemotherapy abcd trial, you might be disqualified for the trial because the results might be clouded as to whether the chemo worked or it was the radiation. This does not mean that you should presuppose that you will not qualify for a triaL. Leave that to the docs. I mention this only so that you do not put all of your eggs into one basket only to find out your basket has a hole in the bottom. Apply for several trials if you can find ones that you want to participate in.

  • virtualtrials.com

    The Musella Foundation's website, virtualtrials.com, is considered by many, to be the single most authoritative brain tumor clinical trial site. This site, literally, revolutionized website brain tumor information. It has clinical trials information readily available, as well as an address book that includes many of the top physicians & treatment centers of excellence. Furthermore, it hosts a chat room and often features top health professionals in on-line forums. Be sure to check out the survivor stories--indexed by tumor type. This site should be your first stop in any on-line brain tumor information search.


    Emergingmed.com

    Launched in 2000, EmergingMed.com is the new kid on the block. While the site is focused on cancer in general, it does have a sub-category for brain tumors & mets. The site uses a confidential questionnaire to match the individual to open clinical trials


  • braintumor.org

    The National Brain Tumor Foundation offers a free service, which allows you to locate trials currently open for enrollment. Powered by Hope Link, it contains comprehensive trials listings in both standard & medical format--with eligibility criteria & contact information.





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