To trial or not to trial?

20638657_1876545285998667_5535337868005876711_nLast time we talked I told everyone that I had been dropped from the experimental drug trial which I thought was working!  I’ve often said it’s all good until it isn’t.

While this has been my approach to this dreaded stage 4 bladder cancer, it is a often a lot easier to say than accept.

After I was told I was being dropped from the trial, my research team gave me the news they had another trial I might qualify for.  They told me to come back in a week and we could complete the testing to see if I qualified.  Then, before I could get back to Houston, a phone call from my research team informing me that I needed to be off the current drug for 30-days before I could begin the next trial.

When I first got home I took more than a few minutes to read about the new trial and some specifics concerning the treatments.  After a couple of readings, and discussions with my wife, I came to a new conclusion concerning this specific trial.

Here is a quick recap:

  1.  Weekly trips to Houston, forever.  After getting used to once a month trips, this is a  major issue.
  2.  The new treatment does include pills; however, it also calls for liquid  chemo treatments every other week.

In my first trial I was forced to experience chemotherapy every week for six weeks.  While I experienced literally no side-effects during the six-week treatment, I experienced no appetite loss or other typical effects many people have.

After a few months of the new experimental trial.  I mentioned that  my neuropathic foot pain became almost unbearable.  It made it almost impossible to walk thru an airport.  The research team in Texas told me that this was a typical side-effect from standard chemo.  They offered no treatment to stop the insane foot pain.

Fortunately, during a trip back to Bloomington, I spoke with my oncologist in Bloomington.  He wrote me a prescription for a drug called gabapentin, within a few days or a week my foot pain ended.  I was able to walk though airports with almost no foot pain!

A few weeks later I visited my eye doctors concerning a little issue with my night vision.  They suggested a surgery to correct my cataracts; however, during some qualifying testing the eye doctor discovered “minor” eye issues with my retina.  When I next went back to MD Anderson they told me that this was indeed a side-effect of my trial.  At that point they did refer me to an eye specialist at MD Anderson.

This is the point where I fully realized that the research team didn’t offer any solutions for pain, rather they just recorded the “side-effect” and moved on.

So this is my update concerning my treatments.  While I am still weighing the program, my inner self is telling me that this new treatment program has about a 40% effectiveness.  My biggest concern is the side-effects of liquid chemo.  Still deciding if I want to continue or possibly checkout available drug trials back home in Bloomington, Illinois.  I’ve thought about end-stage cancer and the side-effects.  To that point I plan on taking the next few weeks to decide whether or not to continue treatment at MD Anderson.

Ending on a brighter note, we had a great super bowl party Sunday.  With the help of my friend, Dave Barto, made $230.00 bets on the game itself.  Most bets were for $10.00 each.  To my surprise when I cashed my bet tickets out I made $2.30!  Not a big win, but a win never the less!

An even brighter note is that my old truck is just about finished!


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