Archive for the ‘Brains!’ Category

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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.

GENETICS:

  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.

GRADE:

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.

TREATMENT:

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.

SECOND OPINION:

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.

AND…

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!

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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,

Mike

 

*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!

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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.

judge-perd

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.

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Buh-bye nasty-ass staples…

October 2, 2016

First time having staples. Over 50 of them at that. Glad to have them taken out yesterday! They were pretty freakin’ gross…

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The Neurobiological Nature of Mike, Again…

September 21, 2016

Hello, friends and neighbors! You may remember my post from a couple of month ago regarding my less than ideal MRI results. Well, last Wednesday Dr. Chamoun, my neurosurgeon cracked open my skull and performed brain surgery on me while I was fully awake to get this little white dot out shown in the scan below on the upper right. During my first tumor craniotomy (Stage I DNET, Stage II Oligodendroglioma, & Stage III Astrocytoma) there was no problem with immediate interference of important brain functions. This time the tumor recurred very, very close to the Broca’s Area of the brain located on the front left side. This is the brain’s primary linguistic center.

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In order to locate and avoid important centers involved in retaining my linguistic abilities they decided to keep me awake and zap my brain with electrodes in the presence of a speech therapist during surgery. I remember questions and conversations I had with her while my skull was open and problems I had as regions were being hit with small doses of electrons. Brain surgery is scary enough so take my word, I would avoid doing it awake… Everything turned out well, so far and I was released from the neuro-ICU less than 48-hours later last Friday morning. I swear modern medicine is insane when they can perform brain surgery and release you less than 2-days later. I’ve got a brand new zipper on my head (I do remember staples being put in my head).

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Though the cancer recurrence was small anyone who was around for the last occurence will know that it’s not so much the size as the Stage of the tumor that determines the seriousness and speed of growth. Doctor’s cannot tell cancer stages without sending in a piece of the tumor to be analyzed. This was sent in last week. Today we finally get the pathology report back from Dr. Taylor, my neuro-oncologist. This will determine my future treatment. I’ll keep yinz updated on the prognosis and treatment options as I get it.

heed

I’ve almost got all the iodine off my skull and out of my hair. I gave myself a fancy new haircut of my own design to help get it out. I call it Trim Four! Last time they used a purple skin glue called Dermabond, much more palatable to the eye than 50-some titanium staples I have now. But whatever. I’m alive and kicking.

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Back on the Chopping Block

August 23, 2016

steveperryWell, boys and girls, friends and neighbors, you may remember a couple of months ago that I said I had a less than ideal MRI that indicated a small but suspicious mass. It could have been a return of my tumor or simply radiation necrosis. Well, the results are in after another scan…they still don’t know until they take it out, but there was more growth than my neurosurgeon, Dr. Chamoun, was comfortable with so, I’ll be going back under the knife in a few weeks. The mass is very close to the speech center of the brain. To try to avoid negatively affecting my speech I’ll be awake during the surgery as they ask me questions and keep me talking. Should be a hoot conversing while someone has their fingers buried deep in my skull. (Period=Sarcasm) And everyone who’s ever met me knows I never shut-up. (note the period) But, really, what else can you do about it. I was given the option of being asleep but in the end I want the best results, so it was my choice. Not that it isn’t a creepy choice to be given! I’ll keep yinz posted! When on a Journey never forget the the immortal words of Steve Perry… (you may all commence the clinched-fist crescendo).

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The Story of the Disconcerting Brain Scan or First Hand Schooling in Hume’s Problem of Induction

July 4, 2016

hume

(Wipe that smug look off your face!)

On June 23rd, Holly and I went in for my quarterly MRI check-up. I laid perfectly still on the MRI table for the usual 20-minute scan before they added a contrast to my veins and scanned for another 10-minutes. When the scan was finished we went upstairs to my neuro-oncologist to get the results, assuming they would be the identical “all-clear” that we were used to over the past two years. It turned out to be a classic example of  my homie David Hume’s problem of induction, “That the sun will not rise tomorrow is no less intelligible a proposition…than the affirmation, that it will rise.” We just weren’t expecting anything this soon. Lesson learned, Mr. Hume. Lesson learned.

Turns out there was a tiny bit in my brain that was taking up contrast and lighting up. Holly knew something was up when they took us back almost an hour early. My doctor, Sarah Taylor, said they hadn’t got a report from the radiologist yet, but because it was white on the scan that she was concerned. She made an appointment with a neurosurgeon for the following Monday and said that she’d present it to the tumor board for discussion Monday morning.

“Boo! Hissss!”

No customary celebratory sushi for the Staytons.

We went in to the neurosurgeon, Dr Chamoun, on Monday and it was more of the same. No decision could be made without cracking my skull back open. But there were only three things it could be:

1.) Slight benign tumor growth. *M’eh not too bad…*
2.) Malignant tumor recurrence. *Worst possible scenario!*
3.) Radiation necrosis. (Dead cells only now appearing from my radiation treatment 2 years ago. Apparently this is not abbynormal.) *Best possible scenario??*
 
A consensus was reached between Holly, Dr. Chamoun, and myself that we should just watch it more closely. So, instead of an MRI every 3 months we’re going to go with every 6-8 weeks, now. The doc’s want to watch a.)if it continues to grow, b.) the rate of growth, and c.) if it does continue to grow they want to note if and when the growth tapers off. If it’s necrosis the growth may continue for 6-9 months before eventually tapering off as the body gets rid of the dead cells. If it’s a tumor it will continue to grow. “yea.”
 
Neither the doctors nor I think the surgical risks (infection, anesthesia problems, clots, stroke, seizures, etc.) nor the spot’s size or location (it’s apparently close to the speech area so they would have to keep me awake to ensure they don’t cut out anything important) are worth slicing me back open just yet. Especially if it turns out to just be necrosis.
 
It’s weird, at 37 years old, when you get told your best option is just dead brain cells. Who ever thought, right? I’ll keep you all updated, me droogies!

 

Hume, David. An Enquiry Concerning Human Understanding (1772). Hackett Publ Co. 1993; Chapter on Cause and Effect.

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