A Little Info from Rod-Boy

Last week in this very space, I updated you on recent developments in my medical condition. Since then, a lot of folks have contacted me to let me know I’m on their prayer lists, for which I am truly grateful.

Back in August of 2008, when I first underwent surgery to remove a malignant brain tumor, I promised to keep you posted of my progress, much as my friend Jerry Fowler had done during his illness a couple of years earlier. He shared his personal battle with cancer each week, and helped a lot of people along the way.

In my column, I mentioned that I had not undergone any of the standard cancer therapies, such as chemotherapy, but instead had chosen the treatment route of “clinical trials”… still-experimental treatments which have not yet been approved by the Food and Drug Administration (FDA).

Several readers contacted me this week asking for more information about clinical trials, so I thought I would share my thoughts about this concept of dealing with cancer.

First, let me say emphatically that these are my ideas, not necessarily endorsed by the entire medical community. I want to share what I’ve learned in the last two years, because I hope someone else might be helped with this information, but I also want to make sure you know that the decision to pursue trials instead of the generally-accepted standard of care is simply one man’s opinion.

The fact is that only 2% of all cancer patients currently participate in clinical trials of experimental treatments. And many of those who do participate do so only as a last resort, only after standard treatments have proven unsuccessful.

To a great extent, cancer patients simply don’t know that these trials are available. Doctors can’t prescribe them, because they have not yet been approved by the FDA. In some instances, however, doctors will mention the availability of trials, usually leaving it up to the patient to follow through.

In my case, my good friend (and lifesaver), Dr. Oscar Lovelace, suggested that I contact Duke University to check into the availability of trials. My doctors as MUSC, knowing that certain standard treatments would not be suitable for me, also suggested checking on trials.

My decision to pursue this course was based on pure-common sense, as I perceive it. Most of these trials are funded by drug companies who are always pursing new and better treatments. I reasoned that it would be unlikely for a drug company to invest millions in a potential treatment which would be less effective than currently approved treatments.

In fact, many of these trials have shown high levels of success… double or triple the success rates of approved standard treatments, and often without many of the undesirable side effects.

None, of course, are sure things. But seeking treatments with higher percentages of success seems like pure common sense to me.

You should always consult with your doctor about these trials, but you can’t always depend on him to know about all the trials. No one does. There are so many different new trials starting each month at so many different locations that it’s simply impossible to keep track with all of them.

But, here’s the good news. There’s a great website which is designed to help people like you and me locate trials which may be suitable. The website is:

http://www.cancer.gov/clinicaltrials/search

If for any reason you have trouble accessing the website, just send me an email, and I’ll be happy to send it back to you as a “link” that you can click on.

In all, the website lists over 8,000 clinical trials that are currently accepting participants.

Amazingly, this very useful website comes to us from the federal government: The National Institutes of Health. (It’s good that they do something helpful for cancer patients, to make up for the FDA being more of an impediment to them for so many decades. But that’s a story for another time.)

As I write this column, I am currently located in Knoxville, TN, where I will be for a few days to begin my second trial. By the time you read this, hopefully, I will be receiving the treatment, pending final results of a battery of tests tomorrow.
I hope this information may be helpful to someone within my readership audience. If it helps only one person live just one day of a fuller life, then I’m thankful to have had the opportunity to share it.

With cancer, no one knows exactly what works, or exactly how or why it works, or exactly which patients will respond to which treatments. Those answers are determined by a Higher Power.

Which gets me back to the prayer lists.

It’s the only thing I know of that DOES work 100% of the time, although not always in the way we want it to. But, regardless, it always works.

And to anyone who may be facing the challenges of cancer, as I am, I ask that you let me know about it, so I can add you to MY prayer list.

Because, believe me, I’m talking to Jesus many, many times every day.

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You’re always welcome to let me know you agree, disagree, can’t make sense of, or simply don’t care about anything I’ve written here… or about any other topic that happens to be on your mind. You can email me directly at: RodShealy@aol.com.

And, if reading it once just wasn’t enough for you, read it again online – along with previous columns -- at my modern-technology Electronic Internet blog: www.doingthefirst.blogspot.com