Posts Tagged ‘temodar’


Chop, chop!

September 1, 2017

StartChoppinWell, wouldn’t you know it, while on chemo the little bastard returned in the same area in less than a year. Forgive my french, but “whah ze fuk?!” Persistent little bugger ain’t he? Guess it’s time to start choppin’.

Dr. Taylor, my wonderful previous oncologist, retired on August 01 and we met with my new neuro-oncologist, Dr. Salacz (“Shallots”) on Wednesday.

It’s been a mixed tumor from the start and we assumed only pieces were recurring, but this time it was the exact same thing as less than a year ago and it seems the pathology results of my tumor are more chromosomally complex than previously thought.


  1. IDH mutation and 1P/19Q genetic co-deletion is typically associated with oligodendroglioma. If someone has this mutation and co-deletion, it makes the cancer very susceptible to chemo treatment making for a better prognosis. I have both this IDH mutation and co-deletion. That said it makes it odd that the tumor has grown back so quickly.
  2. ATRX loss, usually associated with astrocytomas, is also present in the structure of my tumor cells.
  3. Each individual cancer cell is staining for both oligodendroglioma and astrocytoma.
  4. This makes it a rare, unusual tumor that may be more difficult to diagnose and treat as one chemo treatment may work on one type of tumor, but less so on the other.


Due to the traitor’s frequent recurrence, with relatively small growth in size, he’s making himself difficult to classify in to a Grade and treat. Depending on how you look at the data, the more frequent recurrence is associated with a Grade 4 glioblastoma multiform (GBM), but the slow speed of growth lends itself to a Grade 3 anaplastic astrocytoma. End result, we are teetering between the two at this time and unfortunately headed in the direction of that dirty, dirty, Grade 4 GBM. Though the Grade is on the line Dr. Salacz asked if we would allow him to package “he who will not be named”* as a Grade 4 GBM to get me qualified for clinical trials and better, more aggressive treatment. We have agreed, assuming that it’s better to get in a little early than a little late.


There’s also the impression that although it’s been a rare tumor the entire time, it may have only been treated with standard care procedures. Remember my homey Francis Bacon’s quote, “ipsa scientia potestas est” (‘knowledge itself is power’) from a previous post? Dr. Salacz has currently given us six treatment options, but rather than just throwing another alternative at it we agreed to allow, at our own expense, Dr. Salacz to send the biopsy to a company called Caris that will do genetic profiling on the molecular structure. He wants to learn as much as possible before we commit to a treatment. Sending off these labs may very well help us identify genetic markers that may be an “Achilles Heel” and possibly enable us to specifically target an appropriate genetic and chromosomal treatment to stave off future growth. The caveat? There is still a chance they won’t find any such markers. While not a gambler, shooting craps with your life is worth it when the benefits are high enough. The labs have been sent off and now we’re waiting around 10-14 days to get these results back. Blargh.


In the meantime, my doctor has recommended we seek a second opinion before the results come back from Caris. In a rare case such as mine, he felt very comfortable having additional brain tumor experts take a look at the pathology and use that information to help determine our next steps. Having done our research we chose not only a top 5 NCI Cancer Institute, but a top 5 brain cancer research center located at the University of Washington Medical Center and asked for a referral. Dr. Salacz has sent in the referral. As soon as we can get an appointment, we have to book flights, hotels, transportation…all that jazz… and now we’re just sitting here waiting to hear back. Definition of nerve-wracking.


Just to add to the fun the second opinion has to be completed prior to our follow-up appointment on 9/13. Chop! Chop! Right?!


*My tumor previously had a name, and therefore CAN be named, but he’s been pissing me off lately, so NO name for him. NO name! He is now “He who WILL not be named.”

**It seems strange that one has to wait for clinical trials, but due to the uncertainty of their nature waiting for higher grades makes sense. Click on any hyperlinks to learn more.

***We are only writing this from notes we took by hand at the doctor’s office so there may be corrections as new information comes in. I’ll try to keep everyone up-to-date!


He who attempts to destroy my brainerin…

July 8, 2017


Fuckin Jules Motherfucker

Hi Bwian. I can’t believe we’ve known each other for 40 months. It’s so nice of you to unexpectedly show up 10 months after your last appearance. Last time they had to keep me awake and talking during surgery while zapping my brain to ensure I retained my ability to understand and communicate language. I appreciate that.

Since then I’ve been on a shit ton of chemo. You didn’t care though. Just popped your treacherous head in anyway. And your timing…aah, couldn’t be better. But, hey, thanks for teaching me to better deal with adversity.

Well, Bwian, I can’t say you aren’t persistent but I have to admit that you are a sucker punchin’ son-of-a-bitch.

You know what though? That’s fine too. I will fight you with great vengeance and furious anger – tooth and fucking nail, everything I’ve got. I’ll have you pulled out and sliced while any leftovers are slowly poisoned for as long as it takes. I hope you enjoy.

Talk to you later, Bwian,



*Note: I originally used a Calvin & Hobbes cartoon, but was advised against its use by the Andrews McMeel Universal Digital Marketing Manager of Publishing. Forgive me Bill Watterson. I promise I make no money off of my C&H use.

**Happy belated birthday Bill Watterson!


Hey, Perd! What’s the werd?!

October 5, 2016



I beg forgiveness from all my loyal followers! I have no excuse and I know you’re all literally dying to hear what’s going on in my world!

The judgment has come down regarding my latest iteration of brain cancer.


Last week my wife and I saw my oncologist to receive the information from the pathology report concerning whatever they pulled out of my noodle. Firstly, I’ll do a recap of my last diagnosis to remind everyone. On February 26, 2014 Dr. Litofsky at MU’s Ellis Fischel Cancer Center performed surgery and found a baseball-sized mass in my left frontal lobe. The pathology report came back with the malevolent triad of Stage I DNET, Stage II Oligodendroglioma, and Stage III Astrocytoma.

My oncologist, the much beloved and much tattooed, Dr. Doll prescribed 6-weeks of concomitant radiation/chemotherapy (radiation and chemo at the same time) followed by six more month of regular chemotherapy consisting of a 300 mg dosage of temozolomide per day for 5-days followed by a 23-day recovery period. The recovery period allows the body to recover new cells after having effectively just entirely stopping cell growth for almost a full week.



This time only one of the tumor types has returned. There’s no sign of the DNET, or the Stage III Astrocytoma. This time the traitor has turned out to be a quarter-sized Oligodendroglioma tumor. That doesn’t sound too bad but this time it had graduated. This Oligodendroglioma is Stage III. I’ll write another blog with more learning on my current diagnosis. Honestly, could be better, but it also could be much worse. My prescription for this round doesn’t call for any hair ejecting radiation but it does involve 1 full year of chemo. The dosage is 320mg for five days with 23 days off to recover – an amount similar my 2014 double dosage of 300mg. Luckily, I seemed to handle that fairly well. So, I’m pretty positive about it!

I’ll keep yinz all posted!


**A shout out to my radiation-oncologists and their team: Dr. Johnson, Dr. Westgate, and the whole radiation team that treated me.


Nobody tells me nothin’…

June 6, 2016
Apparently it’s National Cancer Survivors Day. Nobody tells me nothin’.
Well, in honor of this day, team Nogginators have assembled to participate in the MetroKC Head for the Cure 5K event on August 28th to raise funds expanding medical research for brain cancer treatments! With over 120 different types of brain tumors, and that pesky blood-brain barrier, effective treatments are extremely difficult to find. So, we need all the help we can get!
Come participate in the 5k, by joining the Nogginators! Or help provide support for the 700,000 brain cancer survivors, such as myself, by donating to the Nogginators! To do so click on the Head for the Cure banner at the top of this page. There will be a welcome site with (2) buttons near the bottom of the page that allow you to participate, “Join Team” and “Donate“. Please give us a hand by donating at whatever level you’re comfortable with.
The Nogginators thank you for all your support!
More updates and information coming soon…

Head for the Cure

August 21, 2014


(The little bastard causing all this trouble.)

Brain cancer, though rare, is the number two cancer killer of children, leukemia being number one. It also affects adults such as myself, usually presenting no symptoms until it’s malignant. Because of its rarity (only 688,000 cases in the US) funding for new treatments is hard to come by. We live in a technologically advanced world but my chemo is the latest drug and it’s over 14 years old. But the brain is especially difficult to treat because the same protective membrane that prevents viruses and bacteria from infecting the brain also prevents medication from reaching the tumor. The difficulty of breachng the blood-brain barrier makes research more costly and difficult. But as I’ve said before, I want to save the boobies, but I need my brain to enjoy them!

If you want to help save the brains so we can continue to motorboat the boobies (we know you ladies love that!) then send a couple of bucks here:

Making a Difference for Mason and Mikey

All donations are tax deductible, go toward raising brain cancer awareness, and funding clinical research trials to find more effective treatments for all brain cancers.


Results of My Treatments

May 26, 2014

Tomorrow we go in to find out if my previous chemo and radiation treatments are working as they should. Though six more months of chemo is guaranteed, I’m really hoping for no more radiation for a long time!

(RT Visual tour!)

So much radiation that the size of the lead vest it would take to protect the rest of my body would crush me.

Creates so much radiation that the size of the lead vest it would take to protect the rest of my body would crush me. Which would be a bit counterproductive.

Comfy in my "pillow."

Comfy in my “pillow.”

Caging my face in to keep me from wiggling around while they're shooting my brain.

Caging my face in to keep me from wiggling around while they’re shooting my brain.

Il machina!


Where big brother keeps an eye on me.

Where big brother keeps an eye on me.

Angry cuz I got a waffleface...

Angry cuz I got a waffleface…

My Very Important Cancer Patient (VICP) card. Hopefully everything worked as planned and I won't need this again for a while.

My Very Important Cancer Patient (VICP) card. Hopefully everything worked as planned and I won’t need this again for a while.



The Uncle Leo

April 19, 2014
If my eyebrows fall out, I'm gonna go for the Uncle Leo markerbrows, from Seinfeld.

If my eyebrows fall out, I’m gonna go for the Uncle Leo markerbrows, from Seinfeld.

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