Last 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:
- Weekly trips to Houston, forever. After getting used to once a month trips, this is a major issue.
- 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!
One thought on “To trial or not to trial?”
A hard decision to make but you’ll make the best one for you. I think of you and your family often.
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