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.

See, Honey, There's Always Someone Who Has It Worse Than You

Team Terry at the Oklahoma Brain Tumor Foundation's Race for Hope
Standing: 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!

Stitch Removal Day!

Graphic Content Warning...it's just a little blood, but please beware.

Wednesday, October 29 was stitch removal day! It was a very busy day in the Regenstrief Health Center at Wishard Hospital where Dr. Shapiro's office/clinic is located. The lobby registration/waiting area was teeming with patients. And each visit is like the first. They don't seem to maintain your information so you have to go through the same registration process each time. Even though Dr. Shapiro is the only doctor I have ever seen there, my registration form always lists the doctor's name as "Dr. Walkin." Go figure. We were finally cleared to proceed to Dr. Shapiro's clinic the sixth floor after about 45 minutes of sitting around. Once there, it was only a matter of minutes before we were back in the examination room and the stitches were coming out.

Yesterday - Halloween - was my last day on steroids and I cannot wait until I return to "normal." Although I did not blow up to Jerry Lewis proportions, the disgusting camel-like hump on the back of my neck and around my chin is clearly visible in the video. And I just seems to feel generally lethargic. My legs feel like they each weigh a thousand pounds. I am anxiously awaiting those side effects to disappear.

So what next? My neuro-oncologist has scheduled the next round of chemotherapy to start on Tuesday, November 11. This will be the combination of Avastin and irinotecan. As it has been explained to me, the whole procedure takes about 90 minutes and is administered intravenously. I have been told that most people tolerate the Avastin pretty well, but there is a chance of some of the more unpleasant side effects with the irinotecan. We'll just have to give a whirl and see what happens!

We still awaiting word from my insurance carrier, Anthem, as to whether they will cover the treatment since Avastin is not FDA-approved for treating brain tumors. Although Anthem has paid for the treatments for others in the past, it does not mean my treatments will be approved. And so we wait.

At $10,000 per treatment, administered every two to three weeks, the hospital is being a bit of stickler that they are going to get paid before hooking me up. Isn't that nice? My doctor has offered no alternative treatment at this point so we're keeping our fingers crossed.

If coverage is denied, we'll need to get a shitload of bake sales in the works, I suppose.

And there you have it!