Approved for Novocure
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.
Pros
- 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).
Cons
- 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.)
Manly Man
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.
Art
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.
Maiden England 2012
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.
16 responses to “Approved for Novocure”
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Meal Train
Sign up to bring us a meal via Meal TrainMEALTRAIN WAS A VERY HELPFUL RESOURCE FOR US BUT NOW IT HAS EVOLVED INTO BRINGING US SPECIFIC UNCOOKED INGREDIENTS BECAUSE of the wtict diet we are on.This is just as valuable to us though..
A glioblastoma journey 
Great news!
Probably not your most pleasant reply, but you may find it useful. I was born with the intestinal problem you describe. I could be a poster child for this solution, but it’s such a simple one, I can’t put together one graphic unit for a poster. My wonderful RN cousin came to me with a spoon, a bag of chopped walnuts and a bottle of olive oil. I chewed four heaping teaspoons of the nuts and one tablespoon of the oil. I’m a believer!
I like all natural solutions! Thanks, Kitty.
Save your money. Get some tin foil and wires connected to the alternator on your Harley. Strap it on under your helmet and ride to Chicago. Really happy you were accepted in the trial.
I like the way you think!
Ken — Sweet, Buddy!!!
By the way, I just saw some cheap Delta flights, Atlanta to INDIANAPOLIS ($79 one way). It’s still a long haul to get from Indy to Chicago, but I can get a spare car over to Indy for you (to get back and forth to Chicago).
Cheers man!!!
Rusty
I love the turtle sidewalk drawing. I am a turtle lover. And you are right – your mom will read every word! Oh, and I am truly glad you were accepted for this treatment. Prayers going up that it works well for you.
Love the sidewalk art. I have a great pix of sand art you did that would fit right in. Hope you get to make some sand art with us soon.
I’m lost on the arm gel, but not interested in an explanation. Not so bad here in the dark. :+)
The testosterone supplement is a gel that I apply to my shoulders rather than swallowing a pill or getting a shot. My mother is using emoticons. Oh, my.
Can’t wait to see you in that funky headgear. So glad you have the opportunity to try the Novocure. Mostly glad you’re painting and drawing and feeling good…except for that little…no, big… incident. Come see us again.
–Rob
First – this thing looks like a wig they wear in British courts or from Colonial times. If you ever go to a constume party, you could dress as a British barrister or a Colonial man. That other part could be your briefcase. I’m glad you got approved. I wish you good things. Next, I love the sidewalk art – it IS art and don’t you say otherwise. Regarding your hairstyle, I like it. That jerk was just probably jealous. Lastly, there’s nothing like an enema!
glad to read good news! read all the way through.
Congrats on being accepted for the Novocure. Dude your gonna look crazy hot in the electro-hat…wear it with the Ken attitude. Love the sidewalk art but i really love ability to inject truth and humor so well. Keep it up Mr. Man!
Hi Ken – greetings from Rush in Chicago. Just wanted to let you know we haven’t forgotten about you and check up on your journey. Disappointed (to say the least) that the tumor found a way to grow again. I suppose it’s possible you were in the dreaded 1/3 blinded placebo arm of the clinical trial. We’re keeping it hot in Chicago so you will feel right at home when you come! You are inspirational to all cancer patients and showing how to live life with cancer as opposed to letting cancer rule your life. You remain in our thoughts and hearts.
Thanks Laura. If I was in the placebo group, I’m curious why I always got the flu symptoms. What could be the explanation for that? Other possibilities are that this immunotherapy isn’t effective for GBM. Or maybe just not for me. I chose Chicago because I thought it would be pleasant up there! Maybe I need to switch to a California location!
Hi Ken – I honestly think they add ingredients to induce that type of response. Every single patient seems to get it and the odds would not support that the 10+ patients we’ve had on vaccine here all got the actual vaccine. However, you are right in saying that vaccine may not be for you. Like every other treatment, response is truly individual. For some people, Temodar works for years and years. For others, Temodar is not the right treatment and they try something else which works for them when Temodar does not. It’s about finding the right treatment for your tumor. I promise you there is hope so I’m glad you still have it. There are always people who defy the odds and no reason to not believe you would be one of those. All we need is a crystal ball….