I got my first infusion treatment today:
- Aloxi, to prevent nausea
- Dexamethasone, a steroid to prevent allergic reaction
- Avastin, to starve the tumor
- Irinotecan, a chemotherapy to cause apoptosis of cancer cells, inhibiting the tumor from growing.
It took about 4.5 hours, start to finish. Eight hours later, I feel good, even a little peppy possibly from the steroid.
That’s all for relevant medical information. The rest of this post is not of much interest unless you’re keeping tabs on my psychologial devolution.
Tina Saves the Day
This won’t be a surprise to those who know us, but once again, Tina takes the bull by the horns. She doesn’t accept an unacceptable answer. She fixes problems.
Last week they told us Carboplatin was not approved for me. Tina contacted our insurance company to find out why. Turns out it was an administrative shortcoming (as I see it). I could have been approved but the finance department didn’t do their due diligence to get it done. Our view on this was, “Ok, fine, we’ll see how treatment goes and maybe add Carbo later. Afterall Avastin and Irinotecan are the Big Two in which we were interested.”
But at our 9:15 appointment this morning the RN informed us that the Irinotecan was also not approved for today. Within 10 minutes Tina had confirmation from the insurance company that it too could be approved and she guided the doctor’s office on how to get the required approval on the spot. We were not leaving without the infusion. Problem solved.
The update gets a bit ridiculous beyond this point. All true, but silly.
I know I’m feeling some effects of the treatment because I drove down to get Tina a slice of Fellini’s pizza and really enjoyed listening to some pop song on the radio. This will be a clear sign to those close to me that something is wrong.
I have to wipe my ass with baby wipes in order to prevent this side effect. I’ll spare you the details.
Tina and I will have to be more careful around each other. A variety of my “bodily fluids” are considered hazardous waste for 48 hours after treatment. Condoms; separate loads of laundry; those sorts of inconveniences.
Ace up my sleeve
As a last resort, I’m going to ask my friend Lane Keener to cook a special meal for me. Lane has literally saved my life on two separate occasions with his cooking. Once in Greensport, AL. Again in Gatlinburg, TN. Sounds exaggerated, but I have witnesses.
Tomorrow morning I will have my first treatment of Avastin and Irinotecan. The intravenous infusions should take between four and five hours for this first go-round.
Here’s my prediction: I’ll tolerate the treatment with very mild side effects, if any; the tumor will quit growing; my brain swelling will subside; and soon the tumor will begin to self-destruct and shrink; then I’ll be able to switch to a less toxic, alternative treatments. I have a lot to accomplish in this life time — got to get healthy quickly so I can get busy living.
A quick note on Novocure: I still have the equipment. Maybe I didn’t give it long enough to work. I continue to read about other people’s experiences with it. But I need immediate results which it was not providing, hence the switch to chemo. Time will tell. I was glad to be free of it’s restrictions though so I could enjoy a weekend of fun and WATER!
Tina and I spent the weekend visiting with friends and family. A family friend allowed us to stay at their beautiful lake house. It was a real joy for me to get in the water since I haven’t been able to do that for over a year. A friend of my brother’s brought his speed boat over. I tried wake-boarding for the first time. I got up on my third attempt. Even though the ride only lasted about 20 seconds before I wiped out, it was a blast.
Thank you to everyone who helped make it a wonderful weekend for Tina and I!
Save the date for a two-day party in my home town, Gadsden, Alabama. It’s an opportunity to get together with friends and family as well as unite as a community. Details are still being worked out but we do know dates and places.
- DATE: Friday, September 21, 2012
- TIME: 6pm to midnight (CST)
- LOCATION: Back Forty Brewery, Gadsden, AL (backfortybeer.com)
- BANDS: To be announced
- DATE: Saturday, September 22, 2012
- TIME: noon to 5pm (CST)
- LOCATION: Willie’s Woods, Rainbow City, AL (www.willieswoods.com)
- BANDS: To be announced
My brother-in-law, Albert Simpson, has been helping us through my cancer journey since day one. It was his idea to put together a benefit event. He’s a musician (www.albertsimpson.com) and will perform, but he ran with the idea and is growing the event into something pretty big, with several bands, a silent auction, good cookin’ and some other activities in the works.
We’re trying to raise a little money to help with travel and bills. I’ve added a DONATE page to this website to help explain more about our needs and situation.
But more importantly, the benefit is about getting to have a good time with friends old and new. It’s impossible to have one-on-one visits with all the people I want to see again so why not gather everyone together for a celebration?
More details to come soon!
We went to Duke and were very impressed. We are going to work with them and they are going to allow the Atlanta Cancer Care Center to administer the chemo, which begins in five days. I’m hopeful and enthused.
People frequently ask how big my tumor is now. It’s approximately 3 x 6 x 3 centimeters — bigger than we want it to be. It’s causing edema (swelling) of healthy brain tissue and I believe that I occasionally feel a sensation of pressure behind my right eye because of it.
The Grand Mal Seizure which began my adventure was easy to identify as a seizure. I collapsed and was unconscious and it took me a while to revive and a few minutes more for my thoughts to become clear. This has not happened more than that one time. What has happened only very recently are some strange occurrences which Duke suggests are known as “focal seizures.” Here are a few examples:
- Tina and I were watching a movie. I start looking around trying to identify a faint rhythmic noise I think I hear behind me. Maybe it was part of the movie soundtrack or my cat’s electric drinking water fountain. I never figured it out and it went away.
- On a half dozen occasions, I’ve had intense sensations of déjà vu or flashes of situations that remind me of a movie or song that I can never identify. It’s hard to describe. It usually fills me with excitement and is quite enjoyable.
I continue to ride. If I ever have the slightest waver in balance or coordination or fogginess of thought, I wouldn’t even think about riding. I’m sure chemo will impede my riding for a while and I’m okay with that. My goal is to fight to ride another day.
That’s the meat of this update. Below are the tedious details which may only be of interest to other GBM patients. I forewent my usual attempts at clever rhetoric.
All the Details
Our appointment at Duke’s brain tumor center was seven hours long and involved separate meetings with various people (neuro-oncologist, RN, trial advisor, clinical pharmacist, nutritionist, social worker,) to discuss my options. They were so thorough and helpful, that I realize this may have been the best facility to go to in the first place. I suppose I had to go through all the trials I’ve been through in order to appreciate the value that Duke actually has to offer.
The one thing that is clear is that I need to take action as soon as possible to stop the tumor from growing. Otherwise I’m likely to become symptomatic (memory, speech, vision and mobility problems), suffer seizures, and risk death.
I will begin a treatment of Avastin and Irinotecan next week. I will also considering whether or not to supplement this treatment with another chemotherapy, Carboplatin, which is supposed to improve survival in people who are Avastin-naive, which I am (that is, I’ve never been on Avastin before).
All three of these agents are delivered intravenously. The first treatment will take about 3 hours to complete (almost 5, if I decide to go with Carboplatin). I will be treated in Atlanta but have to return to Duke every two months for MRIs and evaluations.
I did qualify for one clinical trial (AMG-102). Again, risks outweighed potential rewards. My apologies to future GBM patients whom I may have let down by not helping determine the toxicity of this investigational drug.
We feel empowered and energized after meeting with the team at the Preston Robert Tisch Brain Tumor Center. I suppose since they focus solely on brain cancers they probably truly are the top facility in the nation. I know the other places we’ve been to, Emory, UAB, Rush, are good but they have dozens of other cancers to know about and patients with other cancers to deal with, so how could they always be affluent in my needs for GBM? Those other facilities were hectic with hundreds of other patients when we had appointments. In contrast, Duke’s building was calm. Instead of the usual doctor visit of, wait in the lobby a long time and have a quick visit with the doctor, we had a very short wait and as much time as we wanted with the doctor.
I think I was wrong about Avastin. I thought it was a rough treatment which would be difficult to tolerate. I thought it was really for treating people who were in bad shape and treated symptoms rather than shrink the tumor. I developed this opinion based on my own internet searches and possible misguidance from an oncologist.
I’m now under the advisement from Duke that it has become one of the top treatments for GBM, being administered to newly diagnosed patients along with the Standard of Care treatment. It not only stabilizes tumors, but CAN shrink them.
I have so much faith in it now that I’m ready to begin today.
About the Chemo
Irinotecan is going to help shrink my tumor without debilitating me. This is what I believe, so it must be so.
As of this post, I’m undecided about this chemo. As soon as I click the Publish button, I’m calling up my local oncologist to see what her thoughts are. Carboplatin targets cancer cells and causes DNA to kink, killing the cell.
Apoptosis, that is. (Cell Suicide)
I need the cancer cells in my brain to die. Irinotecan may be the chemo to get them to kill themselves.
Remember, I used to work in advertising. Such a sensationalized headline would have never been approved by editors but since I’m in control here, I can get away with it (although Tina did voice some concern about it).
So to be perfectly clear, things are going great! I feel fantastic, mentally, physically and emotionally. I’m still asymptomatic but we know the tumor grew fast and is probably still progressing. We are encouraged by today’s events and excited about tomorrow’s. Sorry if the headline threw you for a loop.
We recently (not actually yesterday, but last Friday) met with my Emory oncologist. They don’t have any clinical trials that appeal to me. Too much risk and not enough reward. We were encouraged to seek out other trials and if nothing better is available a suggestion was made to employ a chemotherapy used back in the 70’s — DOX (docirubicin). Well, Dox is not used to treat GBM, but there are some studies that indicate that it MIGHT be helpful. And it’s FDA approved, so we can jump on it.
I also discontinued using the NovoTTF device.
Tina and I continue the quest to explore my treatment options. First stop: The Atlanta Cancer Care Center (ACC).
This is a much smaller facility than any of the other places we have been to, including Emory, UAB, Rush University and Northwestern Memorial. But they offer a clinical trial that interested us that the other places could not. Plus they are right down the road from home. Unfortunately my circumstances would have put me into a group of the treatment trial where I may not get the experimental drug. I don’t want to go down that road again. As an alternative, the fantastic oncologist recommended a regimen of bi-weekly intravenous infusions of Bevacizumab and Irinotecan.
Bevacizumab, better known by it’s trade name, Avastin, is an anti-angiogenesis drug. Put simply, it interferes with the formation of new blood vessels that would feed the cancer cells, in effect, starving them to death. While there could be some unpleasant side effects, it seems that most people deal with it just fine.
Irinotecan is an anti-cancer chemotherapy. This FDA-approved drug works by causing cell apoptosis (self-death, suicide). I’m more likely to experience side effects, but they still aren’t expected to be too unbearable.
When we asked about Dox (an Emory suggestion) the ACC oncologist told us that drug is nick-named Red Devil. In other words, a chemo with very unpleasant side effects and no real evidence of helping GBM.
If we go with the ACC plan, the best case scenario is that the tumor stops growing. An ultimate scenario is that the tumor actually shrinks. We are on-board with this treatment. If we don’t hear anything better tomorrow, I will begin chemo on Tuesday of next week.
Second Stop: The Preston Robert Tisch Brain Tumor Center at Duke University
We flew to Raleigh, NC this afternoon and have an early morning appointment at Duke.
We are excited to hear what the renowned brain cancer specialists at Duke have to say. Let you know soon.
My title, “Let’s not be hasty,” has a two-fold meaning.
On one hand, my local doctors don’t seem to be in a hurry to get me into the office to discuss my next steps. I have an appointment in two days, but I was hoping for sooner. After all, my tumor has gotten quite large and I haven’t been doing any treatment since Tuesday. Perhaps I’m over-estimating the urgency of the situation.
On the other, maybe I shouldn’t write-off NovoTTF just yet. I spent some time speaking with tech support today. Seems the device registered very many errors in the 33 days I was using it. I justified to myself that the error beeps the device chirped out throughout most days were normal due to heat and moisture and what not. The tech assured me that although errors were occurring, I was still getting treatment. I should have just replaced one of the parts as they forewarned me I might need to do.
Since I’ve not been prescribed any other treatment now and have a couple days wait before meeting with my oncologist, why not just put the headgear back on, replace the cable connector, use a replacement TTF device and continue the treatment? So that’s what I did today — and what do you know? — the device hasn’t indicated any errors at all. It’s encouraging but I wish I had done this 32 days ago. I’m concluding that maybe I spent the last 33 days undergoing less than optimal treatment. No point dwelling on what can’t be changed.
On this day
100 years ago today, Julia Child was born. Tina treated me to dinner at Babette’s Cafe where the menu was Julia-inspired. I suppose we were also commemorating the one year anniversary of my first craniotomy. This time last year, I suspect I was surrounded by family, completely lit on Dilaudid and Percocet, and annoyingly flirting with nurses. Tonight, I’m very happy.
My tumor has increased in size significantly. We hope to meet with our team of neuro professionals as soon as possible to discuss implications and options.
If I had written this post earlier in the day, it would have read very differently. I was in a blackened state. Not at all the beacon of optimism and hope, you’ve come to know and love. The version below should read more colorfully.
Chapter 1 — Battling Cancer
On June 1, 2012, we launched a second surgical attack on the GBM in my brain. Although my surgeon dealt it a decimating blow, the nefarious tumor cleverly attached itself to my Sylvian Fissure, preventing total gross resection. So to finish it off, I decided that the second-wave offensive would be the NovoTTF-100A device. After all, why bring out the big guns, like Avastin, and suffer it’s chemo casualties, when I can be on the FDA-approved progressive edge of fighting cancer?
Chapter 2 — Progress Check
Today is August 14th, 2012. Tomorrow is the one year anniversary of my first craniotomy. I’m thirty-three days into using the NovoTTF-100A device. Tina and I walk from our hotel to my appointment, enjoying the beautiful Chicago morning. I’m confident and haven’t the slightest anxiety.
First up — 8am MRI. The Northwestern radiology staff are wonderful. The facility was quite nice. It almost felt like a spa visit (at least to me – I can’t speak for Tina).
We then headed upstairs, eager to hear the doctor’s positive review of the MRI, so we could go explore The Magnificent Mile before returning to Atlanta.
Chapter 3 — The Big Reveal
We arrived at the outpatient cancer center and spotted our two Novocure reps. They were there to download the performance data collected by the TTF device I had been using. We all exchanged hugs and niceties while doing the compulsory doctor-visit wait and recording of weight, blood pressure, et cetera.
After a short wait in the exam room, the nurse practitioner came in and bluntly informed Tina and I that the tumor had grown dramatically — almost four times last month’s recorded size. She wanted to get a sense of what we wanted to do now (that is, continue with failed battle plan or try Avastin or a trial).
I was pissed off. Not so much because of the bad news. Moreso about how it was delivered to us. Why wasn’t a doctor talking to us about this sensitive information? I felt so bad for poor Tina. News, good or bad, takes a while to sink into my thick skull. But Tina “gets it” immediately. She was visibly shaken by this horribly disappointing and unexpected report.
I settled down and the doctor soon came to see us, giving us all the time we wanted to grill him with questions and concerns. He was great actually and I see now that the NP was also doing her best to help us. We thanked them graciously and parted well.
Chapter 4 — Let’s Be Honest
In our meeting, the doctor revealed that he didn’t have the highest of expectations for the device. He seemed keen on Avastin and trials. But Novocure is an interesting product. (I know because I get asked about it by strangers every day.) They’ve got some good results data. They’ve got no debilitating side effects. These two criteria have garnered quite the hype. It sure sold me.
Tonight, a good friend picked us up from the airport and took me to dinner where he revealed that all along he thought the thing looked like an experiment and, as much as he wanted it to work, just never thought it was going to. I don’t begrudge him that. It seemed to be the same opinion the doctor had.
I am not saying that I think the device is not effective. Of course every person’s situation and results are unique. I may very well continue to use it. But I know I have to do more.
Chapter 5 — Regroup, Strategize and Continue the Fight
I’m trying to rally the Emory troops ASAP. We knew this was a potential outcome so we’ve already discussed back up plans. We know it’s time to be aggressive. Could there be a third craniotomy? Possibly. If the surgeon says it’s reasonable, I will be strongly compelled to go that route. My previous brain surgeries seemed to go pretty well in my eyes. Afterall, I can still function and even take the bike for a spin every once in a while. But it wouldn’t end there. We’d have to get started with another treatment soon thereafter — maybe take another stab at Temodar; or maybe it’s time to bite the Avastin bullet. Another clinical trial is a strong option, but I won’t do another double-blind, randomized, placebo-controlled study. I don’t mind helping advance science and all, but I’m selfishly more concerned with me right now.
Chapter 6 — But, What If…
Tina and I will have to consider other (crazier) scenarios. Maybe this is a good time to take that trip to Africa we’ve dreamt about for over a decade. Maybe we’ll see if Tommy Chong needs more crusaders on the cancer battlefront. At the very least, get into an ocean before the season is over. Also, other countries have options not available to us here in the U.S.
Chapter 7 — The Very Thought
I’m being open and honest, the Africa trip idea, is clearly a romanticized answer to the classic “What would you do if?” hypothetical. Medically, it means “doing nothing.” What happens if I have a seizure out on the savanna? Are there adequate medical resources? Spiritually, maybe it’s just the ticket. I’d still have my friend’s prayers working for me.
Maybe it’s just my time. I’m not afraid. Many things in life are scary. High-speed weaving through Atlanta traffic on a motorcycle, for instance. Or scraping pegs on The Tail of the Dragon with an oncoming logging truck taking up half your lane. Or having to buddy breathe on a slow ascent and safety stop before surfacing because of equipment malfunction. I’m sure you’ve got your own close-call, adrenaline-inducing experience to relate to. I’m saying, maybe dying is just the final scary-exciting experience of life. I’m neither eager nor prepared for it. But it’s not going to intimidate me into sacrificing enjoyment and fulfillment while I can still pursue them.
Who Knows? (That’s not another chapter — just my final thought.)
Today was Tina’s last day of work, hence the title pseudo-retirement. She resigned from her job so we could spend some quality time together; travel a bit; see some family and friends. So to celebrate, I made a fantasía meal for dinner. Fantasía just means a meal thrown together with whatever you have on hand. I learned about fantasía from Tina’s aunt, Maija, one night in Dénia in the province of Alicante, Spain.
In case anyone was suspicious of my stories in the previous post, I submit to you the multi-course meal I served tonight.
- Beehive Cheese Company’s Squeaky Bee Smokey Jalapeno Cheese Curds and Wickle’s pickles
- Hard boiled egg with 2 year old homemade kimchi
- Farm fresh carrots braised in yuzu juice with orange marmalade roquette salad
- Shiitake mushrooms and local Imperial Sweets onions sautéed in coconut oil
- Roasted red snapper with home brewed kombucha sauce over flame-wilted bok choy
- Hanger steak tataki with nama shoyu and ponzu served with red quinoa salad
- Beef, strawberries, cilantro, habañero spring rolls
- Garden-fresh, sliced, Etowah county tomato and St. Agur butter cream blue cheese with Noble Tonic 03 maple matured sherry bourbon oak vinegar
- Toasted essene bread and butter
- Sautéed sprouted tofu with black garlic and nori komi furikake
- Three-flavors dessert — matcha nama chocolate (green tea white chocolate from Kyotofu Bakery in New York); High Road mango chili lime sorbet; pecan/date raw brownie (homemade)
It’s pretty well known by those who are close to me that I’m (shall we say) particular about food. Ask any of my former co-workers — they’ll corroborate these work stories.
While the others ate left-over spaghetti, to-go or frozen food at the lunch table, I was prepping fresh gremolata to sprinkle on the leftover lamb shanks or Oyakodon that I spent hours preparing the night before.
Whenever an impromptu group lunch outing was being planned, inevitably, someone (usually Nathan) would say, “Ask Ken where he wants to go — he’s the picky one.” It was understood that he meant, “…he’s the pretentious food nerd.” But it was really a playful label of endearment. I think because I didn’t have children to occupy my time (or talk about at lunch), I compensated with culinary adventures.
These stories are sensationalized a bit. Certainly I ate plenty of junk and fast food back then too. Nor was I the only one who ate well from time to time. I seriously doubt I was really pretentious about food (or music). That was just one of my fun personas in the office. We all exploited and enjoyed each other’s idiosyncrasies. Now that I am not employed, I look back with fond memories of an irreverent bunch of co-workers that became as familiar as… family.
Anyway, back on track with a story of my continued food snobbery.
I was disappointed that the free snacks provided at today’s brain tumor support group meeting were unhealthy, junk foods as usual. No one but me cared. I planned ahead though and brought my own fresh fruit on which to nibble.
Pictured on this post is my first attempt at making a healthy sweet treat — raw brownies. Pecans, dates, raw cacao powder and a touch of agave nectar — that’s it. No cooking involved. They’re yummy.
So instead of gastronomic flamboyance, my food-snobbery now is more about advocating healthier eating.
By popular request, here’s a link to the recipe from the Rawtarian website: http://www.therawtarian.com/raw-brownie-recipe/