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
Monday, February 9, 2009
Unable to Remain Stable
Riddle me this...What both sucks and blows, but is not a Shop Vac?
If you answered, "Terry Harper's recurrent, malignant brain tumor," then you are today's big winner!
I learned last week - Feb. 4 - that less than fourth months following my second brain surgery and after five rounds of chemotherapy coupled with supposed miracle drug Avastin that my most aggressive tumor had broken through the lines of defense and is once again "progressing."
Although Lee Ann and I had suspected for a couple of weeks that something might be askew because of some vision problems I was experiencing, the actual confirmation came as quite the ole gut punch.
At the moment, we are scrambling to weigh the available options and make a decision as to the next course of treatment. Those options may include more surgery, more chemotherapy or clinical trials in which I may be eligible to participate.
I have a consultation scheduled back at the National Institutes of Health National Cancer Institute (Dr. Howard Fine) on Friday, Feb. 13, and am scheduling a consultation at Duke University for early next week.
My local doctor has offered to put me on Carboplatin, another chemotherapy, but to do that immediately would rule me out of any possible trials because you have to come into those "clean," i.e. not taking any other treatment.
So that's where things sit at the moment. I should have a plan of action in place within two weeks, at the very latest. As always, time is a factor.
I shall keep you, loyal readers, in the know as I learn more in the coming days. Keep that good karma flowing this way!
Love,
Terry
xoxox
Saturday, December 20, 2008
Paging Marlon Brando's Stunt Double!
"The horror! The horror!"Fat and bald once again am I. Luckily for me, a local improv company has announced it is developing "Col. Kurtz: The Musical," a laugh-a-minute production based on Joseph Conrad's novella Heart of Darkness. I think I have real shot at the lead.
And I have been going through a bit of a creative dry spell which explains the lengthy drought since my last posting in mid-November (not counting the anniversary tribute to Ma and Pa Harper).
The new chemotherapy treatment I started on November 12 had my hair starting to fall out by Thanksgiving. I first noticed it in the shower when I was stunned to see one of my paws covered in hair while I was shampooing. After two more weeks of shedding, I decided to go ahead and shave my pate rather than continue to pull it out in clumps and risk a drain clog.
The first two Camptosar/Avastin treatments proceeded without incident until the third day following when I was completely knocked on my arse by fatigue. It was particularly frustrating at Thanksgiving because I had to miss an entire day of the long-anticipated Harper family reunion. My oldest brother, Tim, is finally home from his Army assignment in Germany and it marked the first time EVER that our entire branch of the Harper family tree was together.
Sitting: Ed (the patriarch), Dale, Jace, Hayden, Hallie, Dionne, Dave and Tim Standing: Terry, Lee Ann, Meghan, Kaitlin, Joan (the matriarch) and NicoleQuickly...Ed and Joan made Tim, Dave and Terry. Tim made Meghan and Kaitlin and is married to Nicole (that's Dr. Nicole now, by the way). Dave and Dionne made Hallie and Hayden. Terry and Lee Ann made Dale and Jace.
And I would be remiss if I did not acknowledge and thank my Uncle Mike and Aunt Marian Harper who host the great Thanksgiving feast each year at their home in Dayton. This year's headcount totaled nearly 50. For some mysterious reason, only Jace Harper is absent from the photo below...It truly is one of the highlights of our year. The feast, that is, not Jace missing from the picture.
And I would be remiss if I did not acknowledge and thank my Uncle Mike and Aunt Marian Harper who host the great Thanksgiving feast each year at their home in Dayton. This year's headcount totaled nearly 50. For some mysterious reason, only Jace Harper is absent from the photo below...It truly is one of the highlights of our year. The feast, that is, not Jace missing from the picture.
As for me, my next chemotherapy session takes place on Tuesday, Dec. 23. My doctor has been tinkering with some of the other medications I am taking which had the pleasant result of sparing me from any debilitating fatigue after Round 3. With Jesus' birthday this week, I am hopeful for the same result this time as we are planning to spend time with Lee Ann's family in the days following Christmas.
Getting back to being fat and exhibiting some nice elephant man like features, my doctor is finally, FINALLY, tapering me off the steroids. By early January, I should be off them completely and am looking forward to the strength in my legs returning and my giant gut to start melting away. I actually have not gained that much weight since the second surgery, it is just that I have lost some pretty significant muscle mass which has turned to chub and been redistributed elsewhere. The disfiguring lump/humps that have developed in my neck-u-lar region should start to dissipate, too, but I am told that could take weeks or even months to get back to "normal."
As for the new treatment itself, it's too soon to know if it is working although my most recent MRI, taken on Dec. 9, was much-improved from the post-op, pre-chemotherapy MRI. So as long as things keep heading in that direction, maybe we're on the right track.
A number of you have inquired as to my prognosis. The only answer I have - which is what my doctor told me - is "I don't know." Since every patient and every tumor is different, I am told that all the medical community has to go on is averages. All of those indicators that were in my favor to start are still there...relatively young, otherwise good health, no neurological deficits...all good. Tumor recurring in less than a year...bad.
I continue to try to maintain a positive outlook and not dwell on the negative stuff. Some times are more difficult than others, but what else can a boy do?
As REO Speedwagon admonished us: Live Every Moment, Love Every Day.
Or maybe it was Kid Rock who said: Bawitdaba da bang a dang diggy diggy diggy said the boogy said up jump the boogy.
Either way, words to live by...
xoxox
Friday, December 19, 2008
Happy Anniversary, Mom and Dad!
Ed and Joan Harper on their wedding day - Dec. 19, 1959 - in Columbus, OhioHats off to Ma and Pa Harper on the occasion of their 49th wedding anniversary! Although separated by great distance, my brothers and I treated our parents to a lavish dinner last night at one of Oklahoma City's finest eateries. All the red meat they could handle! Thanks for modeling the way for nearly half a century!
xoxox
xoxox
Wednesday, November 19, 2008
Avastin Ye Swabby!
Lounging at the infusion center at the new Melvin and Bren Simon Cancer Center at the Indiana University Hospital in downtown Indianap0lis.
I was delighted to learn - less than 24 hours before I was scheduled for my first infusion of irinotecan and Avastin - that my insurance carrier gave its approval to pay for the "off label" treatment. Talk about taking a proverbial load off of our minds. Since these drugs are not yet FDA-approved for the treatment of brain tumors, we would have been faced with paying about $10,000 per infusion had the insurance company not come through. Now let's just hope the stuff works!
Irinotecan is used primarily to treat colon cancer while Avastin is FDA-approved to treat colorectal, lung and breast cancer. Clinical trials involving the use of Avastin alone or in combination with irinotecan have produced favorable results for patients like me with recurrent, malignant gliomas. Earlier this monthly, Genentech, the maker of Avastin, asked the FDA for approval to use the drug as a secondary treatment for glioblastoma, the most aggressive of brain tumors (what I have).
The first treatment occurred on Tuesday, November 11 and took about three hours. I will go back every two weeks for the foreseeable future. A monthly MRI is part of the regimen, as well.
Wednesday, November 12, 2008
See, Honey, There's Always Someone Who Has It Worse Than You
Team Terry at the Oklahoma Brain Tumor Foundation's Race for HopeStanding: Phil Stegal, Terry Harper, Dave Harper, Shelley Spearman, Paula Henry, Roger Lower
Kneeling: Dierdre McCool, Greg McCool, Tammy Hott
Behind and/or Hiding from the Camera: Ed and Joan Harper, Allison Dill
There was a nip in the Oklahoma City air on the morning of Saturday, November 8 as 363 runners and walkers gathered at Lake Overholser for the start of the Oklahoma Brain Tumor Foundation's 5th annual Race for Hope to raise dough for brain tumor research. When I was in high school, we called it Lake Hold-Her-Closer, but that's a story for another time.
Unlike the 5K event that I participated in here in Indianapolis in May, the OKC event was for serious and casual runners alike. One of my high school classmates, Shelley Spearman, organized our group and another of our classmates, Chris Johnson, President and CEO of USA Screen Printing, provided us with custom T-shirts. Shelley was the serious runner in our group and tackled the 12K race while the rest of us walked the 5K course.
While we were out on the course, we passed a couple of women that appeared to be a mother and daughter although I cannot be sure about that. The older of the two inquired about our matching T-shirts and I explained what we were up to. She asked me what kind of brain tumor I was sporting and I told her. I guess she thought having a brain tumor also made me deaf because she turned to her friend/daughter and said, "See, Honey, there's always someone who has it worse than you." I briefly considered making a witty retort to put her in her place, but my better judgment prevailed.
We finished the 5K walk in the not-even-close to record time of just over 57 minutes. Shelley completed the 12K run less than 10 minutes later. She would have finished even sooner, but we held her up at the start taking pictures.
A good time was had by all and the event raised nearly $8,000 for brain tumor research! Thanks, Shelley, for making it happen!
Unlike the 5K event that I participated in here in Indianapolis in May, the OKC event was for serious and casual runners alike. One of my high school classmates, Shelley Spearman, organized our group and another of our classmates, Chris Johnson, President and CEO of USA Screen Printing, provided us with custom T-shirts. Shelley was the serious runner in our group and tackled the 12K race while the rest of us walked the 5K course.
While we were out on the course, we passed a couple of women that appeared to be a mother and daughter although I cannot be sure about that. The older of the two inquired about our matching T-shirts and I explained what we were up to. She asked me what kind of brain tumor I was sporting and I told her. I guess she thought having a brain tumor also made me deaf because she turned to her friend/daughter and said, "See, Honey, there's always someone who has it worse than you." I briefly considered making a witty retort to put her in her place, but my better judgment prevailed.
We finished the 5K walk in the not-even-close to record time of just over 57 minutes. Shelley completed the 12K run less than 10 minutes later. She would have finished even sooner, but we held her up at the start taking pictures.
A good time was had by all and the event raised nearly $8,000 for brain tumor research! Thanks, Shelley, for making it happen!
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