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

31 comments:

Anonymous said...

Go get 'em Terry...another analogy is the old high school football cheer when the opposing team was pushing toward the goal the cheerleaders would lead the crowd in a deafening...'push 'em back, push 'em back, furtheeeerrr, furrrrthhheeerr...push 'em back, push, well you get the idea. I like your choice of the SUTENT approach! xoxo J

John Mocker said...

well being electronically challenged i selected the incorrect option in my previous post, not to be know an 'anonymous' I am John..which you may have figured out by my signature xoxo J closing ;)

SallyB said...

Glad to hear something, cuz. I was beginning to be concerned over your long silence! Well, it sounds like you're hanging tough and doing well in spite of everything! Hope that by the long awaited "Harper Hootenanny" this summer that there will be some good news to report! Keep us all posted, cuz! We're all praying for you!

Carl B said...

Way to hang in there, my brother...and thanks for the "animal, shapes and colors" update for all us Okies.

love and prayers,
cb

Guenveur in Kent said...

Have you tried exorcism yet? I hate that freakin' tumor. I wish you luck with the new drug, a lot of love from the BUrnell clan in Ohio and admiration for you spirit and courage, for your whole family there in Indianapolis and Oklahoma. i I love you lots, Favorite Nephew.
Favorite Aunt G.

Strude86 said...

If your Aunt G will provide the split pea soup, I can dress up in my dog collar and find a crucifix somewhere to do the exorcism. I might even have a copy of the script here somewhere...

Glad to know you'll continue to be in the good care of Dr. Fine.

Be strong and be well.

David...

Russ said...

Keep fighting the good fight!

Also, David's offer to perform an exorcism can't hurt. If you can learn to spin your head around, you'll always have the option to switch careers and become a carny.

Russ...

Anonymous said...

Terry ,
Thanks for the blog!
As long as you don't have to wrestle a cougar, or ruin your Crystal Gale t-shirt, then you can do anything. That was a paraphrase form the movie, "Talladaga Nights".
I will call and Face Book you. You know I need to get you up to date.

xoxoxoxo

Your number 2 at Phi Psi at OSU
Greg G

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