We found out yesterday that I’ve been accepted by Northwestern University in Chicago to use the Novocure TTF-100A device. We had to push for it. They wanted me to first try Avastin and experimental chemo drugs. I want to try Novocure first.
What is it?
The Novocure TTF-100A uses “tumor treating fields” that are delivered to the tumor by applying electrodes on the skin. The fields can kill some of the dividing cells and has no apparent effect on cells that are not dividing. (In the brain, most of the dividing cells are tumor cells).
Does it work?
Here are some statistics from some trials.
As of December 2011, two of the original 10 recurrent GBM patients from the pilot trial are alive and well over 7 years after starting the trial. (I don’t know about the other 8.) The device by itself was compared to the best available chemotherapy.
There’s no way to say, “it works.” It’s just another tool. It’s not an alternative treatment — it’s a new form of standard treatment.
- No side effects! (no nausea, lethargy, appetite suppression, sores or any of the other horrible symptoms experimental chemo can have.)
- It is FDA approved, meaning it’s SAFE to use and insurance will most likely pay for it (and it ain’t cheap).
- I have to wear a skull cap of electrodes (most likely all day every day)
- I have to carry around a backpack or shoulder bag containing the electronics.
- I have to travel to Chicago, probably monthly (and Chicago ain’t cheap either).
Maybe I’ll be able to modify and customize the gear so I don’t look like an electric chair escapee. If the headgear fits under a motorcycle helmet, I’ll be just fine.
That’s the end of the major medical update. Thanks everyone for your support and comments. Below are just some personal updates with a humorous slant for anyone interested. In fact, the content may not be suitable for all audiences (mom). (Just kidding, I know you’ll read it all.)
The results of my testosterone test showed that I’m low. I blame it on the Dexamethasone I had to take after surgery. Today is my first day using a testosterone gel. I rubbed it on my shoulders this morning and… went to a yoga class. (I know — that seems kind of girly for being pumped up on testosterone. And that’s another joke. Yoga is a great practice that I value and recommend for everyone. Plus, girls in yoga outfits? Yeah.) Anyway, after this post I’m going to take a long vigorous bike ride. It could be in my head, but I think I feel bursting with energy.
Damn Narcotics! — The “E” word
The pain from the surgery has subsided so I tapered off using the opioid, oxycodone. Unfortunately, I did not continue the Docusate Sodium (stool softener). If you don’t know, narcotic pain relievers cause constipation so you increase fiber and take a stool softener — or you’ll be sorry. Well, I quit that part too soon and have been paying the price.
It gets more graphic from here, so don’t feel bad about skipping to the next section.
I’m not talking about the pain involved in passing a large, hard stool. I’m talking about abdominal pain that extends to the testicles and penis. The second worst pain I’ve ever had (the first being kidney stones). So I decided to violate my “exit only” rule and got an enema kit. It made a little progress, but more help was needed. I was going to try castor oil, which is supposed to be fast acting and tried and true. But I opted for a liquid glycerine suppository. That worked QUICK. I’m not out of the woods yet. I think one more day and I’ll be completely free of this burden and will never make that mistake again.
I have been doing some painting but I’m not ready to show anything. But I did scribble some chalk drawings on the sidewalk yesterday. Can’t really call it art, but it was fun.
I’m a metal head. Turns out it wasn’t just a phase when I was 15. Heavy metal legends, Iron Maiden, who I have never seen live, played last weekend in Atlanta. Some great friends came from as far as Louisiana, Southern Florida and Alabama to take me to the show. The show was great, but experiencing it with good friends really made it special.
Walking through the parking lot while people were tailgating, I overheard an arrogant critique of my hair style (mostly bald with a patch of hair in the back). I turned to make eye contact, but remembered the bicycle confrontation I wrote about in the Why Can’t We All Get Along post. If it’s not important, don’t waste any effort.
Slayer and Motörhead play July 14th. I’ve also never seen Lemmy and the gang, so come join me for that show.
Today I had my first treatment. A couple hours after gulping down my first set of chemo pills, Tina took me to Emory for my first radiation treatment. It was both no big deal and horrible at the same time. No big deal because it’s too early for me to feel any ill effects of the chemo and the radiation is also painless and only takes ten minutes. Horrible because in my head I occasionally imagined that I was feeling effects. And the radiation mask had shrunk a bit so it was extra tight. It tightened on my throat so that I could feel my pulse. I couldn’t open my right eye. It was nearly impossible to talk and they kept asking me questions. While I wasn’t really very uncomfortable, I was trapped and it seemed like a metaphor for my whole situation. Frankly, it pissed me off. When the nurse asked if I was ok, I simply harrumphed from under my whole-head muzzle. When it was over and she asked,
That wasn’t so bad, was it?”
I replied, “that depends.” I know she was just trying to be upbeat and sweet. At least I refrained from getting belligerent.
The radiation process was very sci-fi. The table I was laying on (which they inappropriately refer to as a couch) rotated. A big X-ray and a couple lasers whirred and hummed around my head as they moved into position. Green and blue lights flashed across my eyelids. Although I couldn’t feel the lasers it was clear when they were radiating me because of the ominous buzzer that sounded, warning others: DANGER, DANGER!
We finished the treatment with a quick bit of lab work. After yesterday, taking a vial of blood was a cake walk. First day of treatment — done. Only 41 days to go. Everything is running smoothly… so I thought.
What we’ve got here is a failure to communicate1
The Emory oncology nurse called to tell me to stop taking the chemo pills immediately. The lab work revealed that for some reason my blood platelet count had drastically dropped. I explained that it was probably because of the apharesis done the day before at Rush. She said that they were not aware that Rush was going to do this and that the ballgame has just changed. Luckily my cell count is still in the safe range, but if I start to spit up blood or blood starts coming out of nose, eyes, (anywhere) — call them immediately.
Well, what do you know — the Emory doctors are finally ready to talk to the Rush doctors. Hopefully they will see eye-to-eye and begin working together. I titled this post “Regression” because this hiccup is somewhat of a step back, a delay that could have been avoided. We (that is, Tina) really had to fight hard to get me into this clinical trial. We have a good feeling about it. I understand that Emory may not be ecstatic that we are working with Rush. Really, this is a business, with all the characteristics — profit margins, competition, ego, profit margins, prestige, and profit margins. Despite my cynical tone, I really do have faith that all my doctors are excellent professionals and good-hearted people with my health as their top priority. I’m confident they will work it out.
Tomorrow I go back to the space station for radiation, just no chemo.
- Quote from Cool Hand Luke, 1967