This is just a quickie, fun post while we wait for real news about Chicago/Novocure plans. [EDIT: It was supposed to be a short one.]
Clinical Trial — NCT01498328
While we were waiting to hear about Novocure, we got my tumor tested to see if I qualify for another trial. Only about a third of people do test positive, which is the requirement, and mine came back positive. That’s good news, but as I read the consent form I realize again that it’s not for my benefit. This is for the benefit of medical science. I did my part with the first trial. Why risk side effects or chance getting the placebo? I want to do things that make me feel I’ve got a chance.
It’s a little freaky, but my Photoshop aficionado, designer friends will understand the urge to play with superimposing my head into the Novocure product photo. Here it is:
I anticipate stares and strange looks in my future.
Healing Sound Frequencies
I’m hesitant to share this, because it was a little embarrassing. Yesterday I went to an event promoting living (raw) foods, healing therapies like infra-red sauna, foot baths, and so on. One of the presenters, “Assention Ambassador” Astarius Miraculii, sang what he called a healing sound frequency. As he suggested, I participated by closing my eyes and setting an intention of seeing myself tumor-free and healthy. As he sang, an unexpected thing happened. I cried, a lot. I couldn’t stop it. I was silent and not a bawling wreck, but still it was hard to control. I rarely get this emotional so I guess I just needed a release. Anyway, here’s a link to a video of what he sang. (If you get fed up with the introduction, skip ahead to the one minute mark).
He then went on to play the didgeridoo, which was very nice as well. I won’t be seeking counsel from him but it was nice to see once.
As I left the event, I was compelled to speak with the parents of a group of young children I saw inside playing with cell phones and tablets. I had just watched a video by Dr. Mercola which presented facts and studies about cell phone radiation. I was always suspicious of my cell phone’s role in my tumor. Children are very much more susceptible to this radiation than adults. The video is long but the information is compelling. The father was appreciative that I brought it up.
When I was going through the unpleasant process of daily radiation, I saw infants and young, bald children having to endure even worse procedures. Parents, please be mindful of technology and diet for your kids.
I dislike sounding like a conspiracy theorist but it seems like greed is the root of all the bullshit that makes life more difficult and dangerous than it needs to be. Exploiting shortcuts without regard to the effect on the masses for the sake of big profit seems to permeate every industry — technology, food, medical, finance and on and on.
Sorry, this was supposed to be a short, fun post, but got kind of gloomy there. Have a great weekend and Fourth of July coming up!
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.
This blog picture is of the brick that Tina and I bought to support the 1996 Olympic Games in Atlanta. The inscription, vous et nul autre (you and no other), is the commitment we made to each other that year when we got married.
Monday night, we read in the July 2012 issue of Atlanta magazine, that Dr. Ian Crocker is one of Atlanta’s Top Docs. Ian was my radiation oncologist up until last October when we no longer needed his services. We liked him very much.
Tuesday morning we met with him to discuss stereotactic radiosurgery. Remember that the surgeon left a small bit of tumor in my brain rather than risk compromising my left arm function. Our thinking was that he could blast the remaining tumor with high-powered x-rays and make me tumor-free without damaging healthy cells.
Dr. Crocker let us know that radiosurgery is not the solution we hoped it would be. Because that area of my brain had already received the traditional radiation therapy dose of 60 Gray, more radiation was likely to lead to tissue necrosis — dying cells. Dying brain cells could mean… all sorts of unpleasant issues. Even if he were able to successfully blast away the rest of the visible tumor, there are likely to be lots of microscopic cells that are just waiting to sprout into tumors that he could never eradicate. Too much risk for not enough reward.
Although the doc didn’t have any good news for us, he delivered the news compassionately yet straight-forward and professionally. He answered all our questions. He cared. I agree with Atlanta magazine — he’s definitely a great doctor.
Plan B is to pursue the Novocure product. I’ll have to wear strange head gear and carry a sack of electronics. But that’s a small sacrifice for being able to live longer. Right? I just heard from Northwestern in Chicago that they can’t recommend Novocure alone for me. They suggest I consider other standard of care treatment, like Avastin in combination with other chemo drugs. They made no effort to explain why. It seems like just a turn-down letter.
It’s getting difficult to remain positive. On to Plan C, I guess.
UPDATE: This just in. Apparently, Novocure is back on! A determined wife is hard to stop!
This is not a very pleasant topic to think about. If you’re particularly sensitive, just skip it. “Knowledge is power” is my stance. We already know that 15 months is the median survival time from initial diagnosis and that’s with optimal treatment, which I think I have received. Median survival from the time of tumor recurrence is only 3-5 months without additional effective treatment. This data puts my expected death date around the end of 2012.
Novocure can potentially slow or reverse tumor growth. But as far as extending survival time, it’s not really any better than the best available chemotherapy. So maybe that buys me another six months or so (statistically). The big advantage is quality of life. There are not really any side effects to deal with.
Don’t worry — I still feel like miracles happen. I expect to beat the odds. But plenty of discouraging things have happened to me. The standard chemo isn’t effective on me. The trial wasn’t helpful. Radiation is out of the picture. Future surgeries are risky. A Novocure provider isn’t interested in helping me. I need to find something effective on this tumor.
I’ve spent some time considering my options and the implications of my choices. It’s easy for thoughts to wander into philosophical subject areas. What’s life all about? What (if anything) matters? I think I’d like to live a long life, but does it matter whether I have six months or six years? I know some people will miss me, but life goes on.
Do I continue with experimental treatments and become a health nut? Or are there better ways to spend my time, money and current good health, like spending time with friends and family and experiencing the wonders of this world? With no children, I have no responsibilities really.
Don’t get the wrong idea. I’m not depressed about all this. It’s more like disappointment with a twinge of anger and frustration. Luckily this weekend a pack of good friend are traveling to Atlanta to take me to a rock show. There’s nothing like getting together with old friends to relieve some stress and aggression.
I had a great day and wanted to share it here.
First, a quick recap:
- I’m recovering well from surgery.
- I’ve gotten the ok to drive.
- We’re ready to get started with treatment options.
- (And there’s that living Hammer Down thing going on too. See last post)
Today we met with the oncologist. It may have been the best doctor-patient experience I could ever hope to have.
Tina and I were adamant about working with a different oncologist. And that is what we got — a recent transplant to Emory from California with all the right personal and professional qualities that differentiate a good doctor from an amazing one.
I really want to go into detail about how well our appointment with Dr. Read went and how much we appreciate him, but the important thing to convey here is that we had a really positive experience. It makes a big difference.
We don’t have an official Battle Plan yet, but here are the top possibilities:
- Stereotactic radiosurgery — It even sounds like hardcore tumor ass-kicking. If my radiologist thinks he can zap the last bit of tumor that’s attached to my Sylvian Fissure without compromising my clutch hand, then we’re gonna attack. You see, we can’t just leave a bit of tumor in there and hope it doesn’t cause trouble.
- Tumor Treating Fields therapy (Novocure™) — I would have to wear a skull cap of electrodes and tote around some equipment. The device creates electric fields that disrupt tumor cell division. No one’s saying this is the solution to brain cancer. In fact, I don’t think anyone is even sure how or why this device is effective fighting tumor growth. But results have been good and I’m a perfect candidate. It’s not invasive. There are no side-effects. I’m glad this is one of my options and that Dr. Read has experience with it.
We’ll have to travel out of state again to get involved with the Novocure product — most likely Chicago.
- (More) Investigational Treatment — There are some clinical trials coming down the pike that should be ideal for me if options 1 and 2 above don’t pan out.
Some more details that may be of interest to other brain cancer savvy readers.
Avastin is there as an option for me, if needed. But right now, it doesn’t seem to be of any use FOR ME. Dr. Read shared his understanding and belief about the real value of Avastin on brain tumors. I have never been keen to get on Avastin so I’m glad it’s not being pushed on me.
To be as healthy as I can be is a priority. It has been for me all along, but Dr. Read is the first doctor to really consider it part of the actual treatment plan. He’s encouraging me to continue my physical health activities — biking, walking, yoga, strength and endurance training. We tested my testosterone level today. If levels are low, which is very likely, he wants me to start using a supplement. I may get a nice looking body out of this deal.
Other reasons the last couple days have been so good:
- Rubber, steel, asphalt, gasoline and speed — I’m motorcycle riding again and it’s truly good for the soul.
- Family, friends, laughing and loving — I’m having fun and lots of people are helping that happen for me.
- Creating, imagining, sharing and thinking — Working on this blog and putting ink and paint on canvas are great releases.
Today, eleven days after brain surgery, I returned to Emory to discuss the surgery, my condition and next steps.
The wound is healing well so they removed the stitches. Dr. Olson explained the post-surgery MRI to us. My first craniotomy back in August 2011, resulted in removal of all of the tumor (except the microscopic bits). This time, they estimate that they removed about 90 percent of the newly grown tumor. There was some tumor attached to the middle cerebral artery which is one of the three major paired arteries that supply blood to the cerebrum. Specifically, the sylvian fissure was affected. Attempting to remove tumor attached here carried the risk of impairing the use of my left arm. Olson decided it would be best to fight that part of the tumor by other means. Unfortunately, we don’t know if anything will be effective. The standard chemotherapy, temozolomide, that I was taking has not proven to be very effective for me. Also, the immunology trial I was involved with doesn’t seem to have been very helpful either. This doesn’t leave us with anything very medically hopeful. But let’s not forget that I do feel good and don’t have any neurological deficits.
Reality Settles In
Since the beginning of my cancer ordeal, I’ve maintained a gut feeling that I’m fine; I’m going to be fine; and that there’s no need to tackle any bucket-list activities. My really good physical, mental, emotional and neurological health had made it easy to feel confident and enjoy life without real worry. But the tumor recurrence has dealt me a thought-provoking blow. This cancer is as aggressive and devastating as the statistics reveal. I could die — soonish. That’s quite a revelation to think about.
Keep Calm and Carry On
We don’t yet know what the plan moving forward is going to be. We did not meet with an oncologist today like we thought would happen. Here are our expected options:
- Choose another clinical trial — Not too exciting. These trial’s are all experimental and meant more for future research rather than saving me. Potentially better than doing nothing but nothing to pin hopes on.
- Reinvigorate our alternative treatments — In the beginning I was very diligent about meditation, acupuncture and supplements. As time went on with good MRI results, I let these activities slip a little. Tonight, Tina and I went to a therapeutic yoga class. It felt really great. I am strong and yoga is absolutely beneficial to my total health. I will look to enhance my meditation practice and go back to acupuncture, too.
- Maintain dietary control — With good MRI results to celebrate and our recent birthdays and wedding anniversary, we reintroduced alcohol to my system. We used to love celebrating with booze in all it’s amazing forms. I don’t think an occassional indulgence opened the door for the cancer to come back, but I am willing to sacrifice that luxury if there is a chance it helps. I’m going to get back into controlling the alkalinity of my body; oxygenating my blood; taking natural immunity supplements; eating organic. My former passion for cooking has returned too.
- Positivity flow — I was convinced that passionate intentions and thinking influence real outcomes. I devoted time to this concept but had also let it wane. I now aim to reincorporate this type of intention into my daily life. I’ll battle this cancer with every resource I can muster.
I’m still intent on having fun and exploring myself and relationships. I’m having a great time connecting with friends and neighbors. I have been painting and drawing, introspecting and writing — nothing worth a damn yet, but it’s an interesting, often frustrating, exercise in self-discovery.
The person most burdened by this life-situation is unquestionably my wife, Tina. That is the greatest tragedy for me.
I don’t have any fear of death impeding me. Rather, the desire to live and live well compels me. That’s why I titled this post “Hammer Down.” Time to live life full throttle.
My wife (Tina), mother (Cheryle) and I arrived at Emory for my 5:30am Friday surgery appointment. We were very excited that I was eligible for the Gliolan (5-ALA) clinical trial. This trial is testing a drug that when ingested, causes tumors to glow red under certain fluorescent light during surgery. This makes it easier to distinguish cancer cells from healthy, normal cells, improving the final result. Although it is a trial, awaiting FDA approval, the drug has been used for over ten years in Europe.
Unfortunately, My white blood cell count was too low on that day and I could not get Gliolan. Doctors had to operate old-school.
The operation took about an hour and a half. I’m told Dr. Olson did consult with me after but I don’t remember it (too doped up). What they removed was 80% tumor and 20% necrotic tissue. A post-op MRI was done, but we have not had the chance to review it yet with the doctors. It’s possible that they didn’t get it all. Also, they cut along the same line as before. They just used sutures rather than staples this time.
Doctors and nurses were surprised and pleased with my quick recovery time. I was discharged from the ICU Sunday at noon. So about a day and a half of hospital care isn’t bad. I had excellent nurses taking care of me, including Tina and Mom.