Blogging in B Minor

One of the most difficult aspects I have faced as a brain tumor survivor is making decisions around how to treat my tumor. In the beginning, there are a million different alternatives thrown in your face. I empathize with people starting this journey because it’s difficult. What do you believe? Who do you believe? Everyone has an opinion and most all of them come from extremely intelligent, highly educated professionals. Do you opt for a clinical trial right off the bat? You could, and it could be the one that makes the difference. It could also be a trial that fails. Or, do you opt for a treatment that has proven success – even if that success doesn’t sound appealing?

With any brain tumor you want to CURE this thing right off the bat. You want to knock it out. You want to employ a treatment modality that has the highest likelihood of doing the job. At the same time, you don’t want to kill yourself in the process! Tough situation. For me, it came down to a simple decision. There is a ton of research taking place – new discoveries are happening each year. I decided this was about utilizing a modality that would extend my life out as long as possible so trials that are now in Phase I or even Phase II could be proven out. If my tumor shows ANY growth, I will avail myself to these treatments but for now, I am adhering to the tried and true treatment that UCSF, Harvard, Duke, MD Anderson and many other experts have recommended in my case – and that was IMRT radiation for 5 weeks with concurrent Temodar and then 6 months of Temodar on an alternating weekly schedule. I am finishing my 6th cycle now. I will continue until 1 year and then stop, unless there is shrinkage in which case I will continue. If there is growth, then it’s time to look at trials and other “cocktails” and go off the beaten path. There is a Neurosurgeon at MD Anderson in Houston, Texas that found himself with a grade 4 GBM – he was faced with all of this. Guess what he chose to do? Radiation and Temodar. He has a wife, children and everything to live for just like anyone else.

We can all over-analyze this. I did. But in the end, for me, it was about going with tried and true methods that had the best percentages of extending my life out, increasing my survival rate and attempting to ensure that I’m here when even better treatments are available. The problem with clinical trials is that many of them require that you’ve had no prior treatment – if you’ve already been on Temodar, for example, you aren’t eligible for the trial. However, if you have recurrent growth, then you can jump back on. That’s my own personal strategy. But initially, I’m driving the car that has been manufactured for 40 years and has an engine that I know won’t die for awhile.  Of course this is a terrible analogy with regard to Temodar, because it, too, was a clinical trial just a few years ago and was found to be extremely effective fighting grade 4 astrocytomas (aka GBMs).  Researchers subsequently determined that this chemotherapy was effective fighting grade 3 astrocytomas and oligoastrocytomas.  This is just one man’s opinion, of course!

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