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Old 03-26-2009, 08:50 AM
Charger is offline
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RIP Charger [My "Sleep Disorder" Was a Brain Tumor]


I had been having a very difficult time sleeping, so I went to see a doctor. He thought I suffered from sleep apnea, but never set up any tests. I was sleeping through the night, but waking up tired. It progressed to the point where I started stumbling around my apartment and loosing track of time. For example, I set up a second appointment with my doctor at 2pm and I called there at 4 to reschedule, because I had missed the appointment. Turns out it was 4am, and I didn't realize it.

I developed a constant grinding sound in my head that I assumed was still due to an extreme lack of sleep. I called my girlfriend who told me to contact my parents and have them take me to the hospital in the morning. I did, and they came, and they ended up taking me to the emergency room. The way I was staggering around and talking slow (I don't even remember this, by the way), the staff thought I was drunk or high. But my parents insisted they do further tests than just bloodwork. They did a scan and found out I had a brain tumor. I was immediately taken by ambulance to another hospital for surgery.

The surgery was rough, well the recovery anyway. Some of that, I don't remember. The surgeon removed as much of the tumor as he could and didn't cause any brain damage. The tumor was 9 x 6 centemeters.

They sent what they removed to Mayo Clinic for testing. It turns out it is a glioblastoma, a fast-growing, nasty cancer. I have begun chemotherapy and radiation a week ago. The surgeon gave me 12-18 months to live, but I have found a number of survivor stories online. I am trying to get signed up for a clinical trial for somethin called CDX-110, which "trains" the immune system to fight the cancer if it contains a specific protein (half of them do). But, for now, I'm keeping a positive attitude, they say that helps.

Last edited by twickster; 10-23-2011 at 01:26 PM. Reason: Changed thread title to reflect sad news
  #2  
Old 03-26-2009, 08:56 AM
Mama Zappa is offline
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KEE-RAP!!!!

I know you're gonna give it a HELL of a fight and beat this thing into submission!!!
  #3  
Old 03-26-2009, 08:56 AM
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Man, that really sucks. Sorry to hear such hard news.


Though it seems like so little to offer, you've got my sympathy and best wishes for a positive outcome.
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Old 03-26-2009, 08:56 AM
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Oh good lord -- how incredibly scary!

My very best wishes to you as you fight this; I'll keep you in my prayers.
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Old 03-26-2009, 08:59 AM
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Wow, that's some rough news.

{{Charger}}

Glad to hear you're keeping a positive outlook... we're all rooting for you to come out on top.
  #6  
Old 03-26-2009, 09:19 AM
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Yah some good news for a change. I'm so happy for you having caught this at this point. It sounds like you'll have a recovery with with almost no major problems.
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Old 03-26-2009, 09:22 AM
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Hey, Charger I just sent you a PM. A friend of mine was in the same boast as you and is now thriving.
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Old 03-26-2009, 09:23 AM
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Originally Posted by Harmonious Discord View Post
Yah some good news for a change. I'm so happy for you having caught this at this point. It sounds like you'll have a recovery with with almost no major problems.
Did you mean to post this on some other thread where the poster didn't say he has one year to live unless he gets lucky with an experimental treatment? Your post was... incongruous.

OP, I wish you all the best. It sounds like you are in the best hands you can be in.

Last edited by Hello Again; 03-26-2009 at 09:24 AM.
  #9  
Old 03-26-2009, 09:24 AM
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I am sorry to hear your news! Wishing you the best of luck. Sending healing thoughts your way.
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Old 03-26-2009, 09:29 AM
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Best wishes, Charger. What an overwhelming experience.
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Old 03-26-2009, 09:50 AM
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Oh, my God. This brings back bad memories for me. Charger, the very best of luck and health to you; fight big and win.
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Old 03-26-2009, 10:02 AM
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Good luck to you, Charger. Be strong.

StG
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Old 03-26-2009, 10:05 AM
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Originally Posted by Hello Again View Post
Did you mean to post this on some other thread where the poster didn't say he has one year to live unless he gets lucky with an experimental treatment? Your post was... incongruous.

OP, I wish you all the best. It sounds like you are in the best hands you can be in.
Damn I didn't catch that. I thought this was a caught aggressive cancer early and beat it. Somedays my reading comprehension sucks. Obviously today was one of those days.

Charger you have me apologies for that.
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Old 03-26-2009, 10:17 AM
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Charger! I hope you get the best treatment and care, and stick around with us! Good wishes for your continued health.
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Old 03-26-2009, 10:19 AM
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Shit, Charger, I'm very sorry to hear this. I hope the chemo is tolerable and stops this thing in its tracks - if not, there are other anti-EFGR drugs out there, so I would think there are other choices for you.
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Old 03-26-2009, 10:20 AM
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You're in my prayers, and keep up your positive attitude. There are several chemo warriors here, and we know what you're going through.
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Old 03-26-2009, 10:49 AM
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I am sorry to hear this. If it helps, the CEO of our company has been fighting that same thing for over 10 years now -- and he seems to be winning the fight, despite age and weight! I hope he (and you!) continue to win. His also began with an odd sensation (like your grinding), where he said his head felt as though he were laying on a cold concrete floor all the time. his doctor had enough sense to realise that that was *not normal* and ran tests.

Good luck and well wishes for you. It may be a long, hard run, but I hope you keep going!
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Old 03-26-2009, 11:11 AM
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Glioblastoma took my father. You have my thoughts and sympathies.
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Old 03-26-2009, 11:18 AM
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Aiiieee! A friend of mine had a tumour removed from her head last October. The tumour was 1/4 of her brain. (!) She's still battling.
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Old 03-26-2009, 11:20 AM
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So far, the chemotherapy, an oral pill called Temodar (Temozolomide) has not had any side effects, even though there is a list of potential side effects. I have been cautious by avoiding spicy foods and such, as one of the side effects is nausea. So far, it has been easy. I do tend to feel a little bit tired after the radiation, but not much.

One of the advantages I have that will likely help me beat the statistics is that I'm 34 years old. glioblastoma is more common among older men. And, when they test the tumor, they rate it based on the worst part of it. The surgeon mentioned that it was likely a slow-growing tumor that developed into a faster-growing type. He said that that area of the skull was thinner than normal, indicating that the tumor had been there for some time. My hope is that the aggressive parts of the tumor were removed during surgery and that the chemo/radiation will take out the rest without much trouble. I've been on radiation for a week now, and the same for chemotherapy and that part has been pretty easy on me. I just hope it's hard on the cancer.
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Old 03-26-2009, 11:22 AM
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Stay in touch with us and let us know how you're doing.
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Old 03-26-2009, 11:22 AM
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I am sorry to hear that you received this news.
I think pursuing clinical trial enrollment is a great idea, and indeed may very well help you beat the odds. I hope it works out well for you.
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Old 03-26-2009, 12:17 PM
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You're in my thoughts. Sending you healing energy and positive vibes.
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Old 03-26-2009, 12:20 PM
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Damn. Sending you luck.
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Old 03-26-2009, 12:30 PM
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Stay in touch with us and let us know how you're doing.
Ditto!

And Charger, you have my thoughts and prayers. Use us as a venting place, we're good for that!
  #26  
Old 03-26-2009, 01:05 PM
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Wow, Charger, I'm impressed with how on top of things you are. I really hope you get into that clinical trial and are able to fight off the cancer. Please keep us updated.
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Old 03-26-2009, 01:28 PM
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Oh, wow. Hopefully you can beat this -- best of luck and goodthoughts in your direction.
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Old 03-26-2009, 01:35 PM
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Sending warm thoughts and good vibes your way. Both my sister and one of my oldest, bestest friends have beaten cancer, but it was not easy or fun for them.

Bon courage, {{{{{Charger}}}}}
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Old 03-26-2009, 01:36 PM
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Oh, god, man. Stay strong!
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Old 03-26-2009, 01:46 PM
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I'm really sorry to hear it, Charger. I lost my grandpa to a glio. He was 68, though. Still "young" these days, but twice your age. I really truly wish you the best.
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Old 03-26-2009, 02:24 PM
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How frightening!


Take very good care of yourself!


I'm keeping you in my thoughts!
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Old 03-26-2009, 02:26 PM
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Wow.

Glad they caught it, and I wish you the speediest possible recovery.
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Old 03-26-2009, 02:53 PM
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Stay strong, Charger... Fight the good fight!
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Old 03-26-2009, 04:09 PM
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Beat the crap outta that thing! Hang in there and best of luck to you!
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Old 03-26-2009, 04:23 PM
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Suddenly, Ray Magliozzi's story about going to the emergency room and being told, among more possible diagnoses, "or it could be a brain tumor" isn't quite as funny.

Best wishes, Charger.
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Old 03-26-2009, 04:44 PM
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Stay strong, and thank goodness you've got a girlfriend and parents with good heads on their shoulders. I can't imagine how many things like this have gone wrong because the patient didn't want to bother anyone, or written off as a junkie.
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Old 03-26-2009, 07:00 PM
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So very sorry to hear that. Best wishes that you'll beat this thing into complete submission and utter surrender.
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Old 03-26-2009, 07:17 PM
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Best wishes to you and your family.
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Old 03-26-2009, 07:25 PM
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I do hope you embarrass the hell out of the doctor who diagnosed sleep apnea.

As someone who went through chemo and radiation last year, I will offer this tidbit...if you have ANY side effects, tell your doctor. Chances are they have something to alleviate them.

And go see your dentist. So many people forget about going to the dentist, but chemo is hard on the bones (I was iron and vitamin D deficient when I was done, but I'm fine now thanks to extra vitamins) and you may get some super-duper flouride toothpaste to keep your teeth strong and a wash to help with mouth sores.
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Old 03-26-2009, 07:51 PM
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Bless you - good luck, I feel you will defeat this thing. Wishing you all the best.
  #41  
Old 03-26-2009, 10:00 PM
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A salient lesson to all of us--if you have sleep issues, they may not be innocuous. I hope you beat this thing. Best of luck to you.
  #42  
Old 03-26-2009, 10:10 PM
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I have been cautious by avoiding spicy foods and such...
Now that's just unfair. A little heat is one of those cheap pleasures!

Seriously, stay strong and stay positive.
  #43  
Old 03-26-2009, 10:12 PM
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i hope the rounds of chemo and radiation do the trick. hang in there and keep us udated.
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Old 03-26-2009, 10:19 PM
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Just saw this thread. Charger, I'm SO sorry to hear that!

It does sound like a missed diagnosis to me as well!

Anything I can do at anytime!

Proud of you that you're being proactive and positive!

Bill
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Old 03-26-2009, 11:01 PM
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Good luck, and I'll keep you in my prayers.
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Old 03-27-2009, 05:10 AM
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How scary. You're in my thoughts.
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Old 03-27-2009, 07:54 PM
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Wow. That is scary.

You will be in my thoughts and (if you don't object) in my prayers.
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Old 03-28-2009, 02:10 PM
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Wow. That is scary.

You will be in my thoughts and (if you don't object) in my prayers.

No objections there, the more the better.

I asked the radiation oncologist yesterday if there was any progress, and they won't be able to tell until the six weeks of treatment ends and they do an MRI. Right now, they scan each weekday just to align the radiation to make sure it targets the tumor. They won't be able to see the effect the treatments have until they do the MRI. Five more weeks until I know. And the current plan is to finish this cycle of radiation/chemo, and then give me a two week break followed by a higher dosage of chemo only. I assume the treatment would be adjusted as needed, depending on the results. It's tough not knowing, but I'm hanging firmly onto the idea that it's going away. That's what the treatments are for, after all.
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Old 03-28-2009, 02:53 PM
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Charger, I just looked at your profile, and I didn't see an age, but I'm going to take a stab and say that you are younger than me (I'm 59).

What I want to say to you, is that I am very proud to know you, even from a distance.

Here's my theory (for what it's worth) about why all of us are so stoic:

It's because we know more than people did as short as 100 years ago. We have gained so much more information, that instead of throwing up our hands and giving up, we are now in fight mode, and that is a good thing.

A very good thing.

Fist to heart, my friend!

Bill
  #50  
Old 03-28-2009, 07:13 PM
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I do hope you embarrass the hell out of the doctor who diagnosed sleep apnea.
If the doctor knew about the confusion and coordination problems, yes, it would be reasonable to expect him to pick up on the possibility of a neurological problem brewing. However, a complaint of "Waking up tired" by itself is pretty classic for sleep apnea and if that was all the doctor was going on he may not have done anything wrong at all.
Unfortunately not all cancers are as easy to diagnose as we would like, and sometimes bad things happen that aren't anybody's fault at all.
The important thing is that it sounds like Charger is getting good care now that everyone knows what the problem is.
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