Cue The Music

Recently, I was invited to join a group of bloggers as an ongoing roundtable for brain tumor patient issues. When the email popped into my inbox, I was surprised, and honored to be included. Over the past four and a half years I've corresponded with many brain tumor fighters, and family members of fighters; a few times I've been solicited to endorse various products (which I've turned down - ironically they were mostly pharmaceuticals), but I had yet to be invited to submit a post on a specific subject regarding brain tumor patient care or patient issues. I am flattered! The deal is that I submit my post and then out of all the submissions the National Brain Tumor Society will choose a few to be featured on their national website. I don't know if that excites me or terrifies me, but I do love to write so I figured this will at minimum be a fun homework assignment, a good challenge. The topic: What symptoms do you think should be candidates for therapeutic drug development?

When I read the topic, I slouched down, disappointed. I was hoping for something else, anything else, that I could write organically and passionately about. The tricky part? I don't like to take drugs. (Which, humorously, will probably bump me out of the running of getting on http://www.braintumor.org/.) But what do I do? I wasn't about to all of a sudden flip flop my stance just for the chance to be published. At least, I didn't think I would. But as I started really thinking about drugs, I remembered my lorazepam prescription which as been a life saver. Possibly even literally. Lorazepam is what I take as I feel an aura, the premonition of a seizure, coming on. It effectively mitigates my seizure issue, stopping my seizures in their tracks. It allows me to live a semi-more-normal life. So, although I don't like to use medications, I realize that there is definitely a place for them in my life. Not only is there a place, I actually need them.

Even though the idea of taking more drugs is unappealing, I acknowledge that it is in my best interest to keep my mind open. My hesitation as been due to the traumatic side effects I've experienced from the various drugs prescribed for my brain surgeries and seizures. Sure, sometimes they were minimal and worth it, but most of the time I felt like I couldn't win, that I was stuck in some sort of medical purgatory. I've dealt with horrible acne of all kinds, moodiness, weight gain, lethargy, even thoughts of suicide - all from taking those tiny little pills. Side effects are no joking matter, sometimes they're even worse that the symptom you're trying to alleviate. So, anyway, as I've digressed, what symptoms do I think we need more drugs to combat? Huh. Tough one. I have to scan back to my situation: exhaustion, memory loss, cognitive issues, word-finding issues, extreme difficulty handling changes in routine, seizures, nerve damage from surgery, vertigo, brain pain/headaches, scar pain, sensory defensiveness or overload. I can't even think of the other random symptoms I deal with. It has all become a sort of blur that is my life.

But if I was to hope for a miracle drug that could evaporate one or a few of my symptoms, a magic pill that would help me get back to normal, that ever elusive state that we remember fondly - the time before diagnosis - I would hope for something to poof away my exhaustion without causing a seizure. Or I would poof away my brain pain and headaches. Ultimately, I wish I could poof away all of it so that I could run free like the happy little squirrel that I am, but I know that it's impossible. I can't unexperience this brain tumor life. I am forever changed. It's a shame that we can't unknow things, or unhave specific experiences. So, since I will most likely never be able to take a pill to poof all of the symptoms of my tumor, and my brain surgeries, I do wish for something that would give the illusion of health, and would provide a more enjoyable day-to-day life. If I didn't experience scar pain, screw pain, incision pain, and headaches in general or if I didn't experience such drastic exhaustion on a daily basis, it would be a great improvement in the quality of my life. It would allow my brain to heal and rest, and probably assist the recovery from my cognitive issues, even lessen my seizures. All this stuff has such a domino effect. And if the side effects were minimal, I might just get up and dance about it. Oh who am I kidding, I already started wiggling in my chair at the word dance (cue C&C Music Factory, "Everybody dance now..."). Ultimately, nothing is going to keep me down for long, not a headache, or complete exhaustion. I won't wait on a pill to live my life, but I'm not going to lie, the option sure would be nice.

The Issue of Supplements During Treatment

The information about whether or not to take supplements during treatment is confusing. The vast majority of oncologists say to avoid all supplements, especially anti-oxidants, during treatments, but I think that's a shortsighted stance. There's a plethora of research studies showing the benefits (and sometimes the downfalls) of adding a few supplements to your protocol. There are many oncologists that are anti-supplementation, but then there are lots of cancer nutritionists, and other alternative specialists who are pro-supplementaton during treatments. Not knowing who to trust, we often end up avoiding healthy supplements that can act synergistically with our radiation/chemo/etc., or we pick the wrong supplements which can lessen the cancer killing effect of the treatment. But how do we know what to do? Who do we trust? We don't have the time, or often the brain power, to sift through everything when we're dealing with a new diagnosis, or the progression of disease. That's why I was very excited to see that Ben Williams, Ph.D. updated his research on the issue of supplements during cancer treatment. You may recognize Ben Williams, Ph.D. as a glioblastoma fighter who wrote the book, Surviving "Terminal" Cancer. He's an incredible resource who is very active in the brain tumor world. This guy knows his stuff. His paper is 42 pages, which may seem overwhelming at first, but when dealing with such a complex issue you really do want exhaustive information. This is truly a fabulous resource. You can access the document below, just click. Enjoy.

The Role of Supplements (including Anti-Oxidants) in Cancer Treatment

By

Ben A. Williams