Tumor? Two More? Get it? Even with a life-threatening illness, I still retain my status as Wittiest Male in the Yukon High School Class of 1982, no?
And like Black Flag's Roach Motel, I sure hope there is plenty of room for those malignant cancer cells to check in, but not check out.
Lee Ann and I returned from Bethesda and the NIH this past Wednesday, March 11, and I took my first dose of Sutent later that evening. Thank God, I experienced no ill effects from the new chemotherapy. The only noticeable change is a desire to listen to the music of The Backstreet Boys. I fully realize that this is probably not normal for a man on the verge of his 45th birthday, but those dudes sure do sing well together...at least on their records. I can't bring myself to see them live. Just can't do it. Nope.
I head back to the NIH in two weeks - March 24-25 - for some additional lab work and a visit to the clinic. My dad is traveling with me since the vision loss I have experienced has made me a bit leery of traveling alone. It's just the left peripheral vision, but it can still result in lots of bumping into objects and people. It should be a pretty easy trip although all of the traveling of late is becoming tiresome. And while there is no legal requirement at this point, I have decided that my driving days are over for now. It was a very tough decision to make since it involves a major loss of independence, but it was probably the right one for my safety and, more importantly, that of others. My loss is Dale's gain as I think he enjoys getting the extra time behind the wheel. Lee Ann has taken on extra chauffeuring duties with her usual good humor and grace. Don't know what I would do without her. I definitely won the lottery with her.
I will return to the NIH again two weeks following the March 24-25 visit and then again a month later. Those visits will involve MRIs to determine whether the Sutent is having a positive effect. If it is, we continue, if not, we find something else. Pretty simple.
And on we go!
Love,
Terry
xoxox
Saturday, March 14, 2009
Thursday, March 5, 2009
Your Tent? My Tent? No, Sutent.
It's about 1 a.m. on Tuesday, March 10 while Lee Ann and I try to catch some sack time at the Doubletree Inn in Bethesda in preparation for the next couple of days' activities. After carefully considering our options when we learned that my brain tumor had started to grow again, we decided to come back to the NIH in the hopes of enrolling in a new clinical trial here involving a drug called Sutent.
Like the old ads for Certs that advertised Certs working like, two, two, two mints in one, Sutent attempts to do the same thing to tumor cells, but without the added benefit of fresh breath.
Now, I ain't no scientist, just a simple Oklahoma boy so don't quote me on any of this stuff. This is just how it was explained to me and Lee Ann.
The first thing Sutent attempts to do is cut off the tumor's blood supply, much like Avastin, the drug I was on for a few months between Nov. 2008 and Jan. 2009. But tumor cells are smart...and hungry. You may be able to throw up a roadblock that will fool and starve them for awhile, but just like a car that is held up by a 50-car pile up on the turnpike, drivers are eventually going to find another way around the roadblock. Tumor cells are the same way. Sutent is one in a new goup of drugs being developed called "back road blockers." The idea is to keep that initial roadblock in place long enough to create additional roadblocks so when the tumor cells figure out it is time move on, there is no place for them to go.
Again, I'm probably getting some of the science wrong here, but Dr. Fine at the NIH has always done a good job of speaking in what I like to call "animals, shapes and colors," so that I have a good understanding of how this stuff is supposed to work.
In our process of checking out the available options, my neurosurgeon in Indianapolis wanted to perform a rather radical procedure that would remove the occipital lobe of my brain entirely and parts of my parietal lobe. While Dr. Fine was rather ambivalent about surgery last fall, he definitely thought it was the wrong way to go this time. At best, the procedure might get 70% of the tumor; I would sustain permanent loss of my left peripheral vision from the middle of my left eye over and the same from the middle of my right eye looking left. And then there would still be upwards of 30 percent of the tumor still left that would have to be addressed with more chemotherapy of some kind. Since my peripheral vision has already been impaired, I thought I would just as soon leave open the possibility, however remote, that a new treatment might at least provide some hope for improved vision if the tumor progression is halted or the tumor even starts to shrink.
We also traveled to Duke University to visit their brain tumor center there. They agreed that surgery was not their recommended course of action for most of the same reasons Dr. Fine was against it, too. The trial they had open was enrolling 48 patients all of whom would be treated with Avastin. 24 patients also would be treated with Temodar while the reamining 24 would receive etoposide, another chemotherapy drug. Those receiving either Temodar or etoposide would be decided randomly, much like the flip of a coin.
What eventually led us back to the NIH was that Sutent is new to me. I have already been treated with Avastin and Temodar and both ultimately failed although I experienced the longest progression-free period of time with on Temodar.
Sutent is a daily oral chemotherapy that I can take at home. I will have to return to the NIH on a monthly basis for an MRI and neurological exam. As long as the drug is working and there is no new tumor progression, AND my body is tolerating the medicine, I can remain in the trial. If it eventually stops working, there are still other options to consider that are available today and other places to check out that are on the cutting edge of brain tumor research. With each recurrence, however, the tumor becomes harder to beat back the next time, but I don't think I'm ready to toss in the towel just yet. The docs tell me that while people with Glioblastomas do not ultimately have a rosy prognosis, my tumor is still in a non-critcal area of my brain so that continues to work in my favor. We continue to try to keep the spirits up and the optimism high. It's not as easy as was, say, say six moths ago, but Lee Ann, Dale and Jace have been great, not to mention the rest of my family and all of my friends. I will do my best to keep you posted as we enter this new phase of treatment.
Love to all with malice toward none...except aggressive brain cancer cells,
Terry
xoxox
Like the old ads for Certs that advertised Certs working like, two, two, two mints in one, Sutent attempts to do the same thing to tumor cells, but without the added benefit of fresh breath.
Now, I ain't no scientist, just a simple Oklahoma boy so don't quote me on any of this stuff. This is just how it was explained to me and Lee Ann.
The first thing Sutent attempts to do is cut off the tumor's blood supply, much like Avastin, the drug I was on for a few months between Nov. 2008 and Jan. 2009. But tumor cells are smart...and hungry. You may be able to throw up a roadblock that will fool and starve them for awhile, but just like a car that is held up by a 50-car pile up on the turnpike, drivers are eventually going to find another way around the roadblock. Tumor cells are the same way. Sutent is one in a new goup of drugs being developed called "back road blockers." The idea is to keep that initial roadblock in place long enough to create additional roadblocks so when the tumor cells figure out it is time move on, there is no place for them to go.
Again, I'm probably getting some of the science wrong here, but Dr. Fine at the NIH has always done a good job of speaking in what I like to call "animals, shapes and colors," so that I have a good understanding of how this stuff is supposed to work.
In our process of checking out the available options, my neurosurgeon in Indianapolis wanted to perform a rather radical procedure that would remove the occipital lobe of my brain entirely and parts of my parietal lobe. While Dr. Fine was rather ambivalent about surgery last fall, he definitely thought it was the wrong way to go this time. At best, the procedure might get 70% of the tumor; I would sustain permanent loss of my left peripheral vision from the middle of my left eye over and the same from the middle of my right eye looking left. And then there would still be upwards of 30 percent of the tumor still left that would have to be addressed with more chemotherapy of some kind. Since my peripheral vision has already been impaired, I thought I would just as soon leave open the possibility, however remote, that a new treatment might at least provide some hope for improved vision if the tumor progression is halted or the tumor even starts to shrink.
We also traveled to Duke University to visit their brain tumor center there. They agreed that surgery was not their recommended course of action for most of the same reasons Dr. Fine was against it, too. The trial they had open was enrolling 48 patients all of whom would be treated with Avastin. 24 patients also would be treated with Temodar while the reamining 24 would receive etoposide, another chemotherapy drug. Those receiving either Temodar or etoposide would be decided randomly, much like the flip of a coin.
What eventually led us back to the NIH was that Sutent is new to me. I have already been treated with Avastin and Temodar and both ultimately failed although I experienced the longest progression-free period of time with on Temodar.
Sutent is a daily oral chemotherapy that I can take at home. I will have to return to the NIH on a monthly basis for an MRI and neurological exam. As long as the drug is working and there is no new tumor progression, AND my body is tolerating the medicine, I can remain in the trial. If it eventually stops working, there are still other options to consider that are available today and other places to check out that are on the cutting edge of brain tumor research. With each recurrence, however, the tumor becomes harder to beat back the next time, but I don't think I'm ready to toss in the towel just yet. The docs tell me that while people with Glioblastomas do not ultimately have a rosy prognosis, my tumor is still in a non-critcal area of my brain so that continues to work in my favor. We continue to try to keep the spirits up and the optimism high. It's not as easy as was, say, say six moths ago, but Lee Ann, Dale and Jace have been great, not to mention the rest of my family and all of my friends. I will do my best to keep you posted as we enter this new phase of treatment.
Love to all with malice toward none...except aggressive brain cancer cells,
Terry
xoxox
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