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jenugl
Moderator
Joined: 24 Sep 2006
Posts: 202
Location: Cairns, Queensland, Australia
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 Posted: Tue Nov 06, 2007 5:19 am Post subject: Re: Oligodendroglioma |
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Hi Trigggl, I was reading your post regarding staples and scars etc on another topic. I had a look at your sight and thought I'd post here so as not to hijack that persons topic.
WOW. Pretty kewl train tracks Trigggl... My partners was on his right side and it actually looks like a horse shoe. So of course we tell people he was kicked by a horse.. Just before going into surgery my partner and his best mate were talking to the surgeon and he asked him to give him a pretty good scar as his best mate and him are often comparing scars must be a boy thing. Anyway the surgeon did a great job (neat and if you had longer that a #1 hair cut you wouldn't see it)and because I usually give me partner a #1 hair cut (very short) it's mostly visible (even though it doesnt protude out of the hair line - won't be long though as his hair is slipping backwards) due to surgery - so he says ). Anyway glad everything is going well for you, hope it does for many years to come. Also glad to see you've got a great woman helping you - I know what she's been going through (being the partner)Love to all. Jen. |
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Trigggl
Regular
Joined: 20 Dec 2004
Posts: 42
Location: LR, Ar
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| Posted: Tue Nov 06, 2007 10:41 am Post subject: Re: Oligodendroglioma |
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What a coincidence. My wife cuts my hair and I'm actually due for one. I hate hair cuts, so I have her cut it about a #2 on the sides, which makes things visible enough. I do like showing off the scar for some reason. I actually have a coworker who also had brain surgery. He also has a horseshoe looking thing on the side of his head. He had a tumor, but not cancerous. He keeps his hair short.
Imagine that, two brain surgery recipients as coworkers in engineering. I joke that between us we have 1 and a half brains. One and a half brains are better than 1.
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Greg --> 5 years and counting
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Trigggl
Regular
Joined: 20 Dec 2004
Posts: 42
Location: LR, Ar
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Tammy
Senior User
Joined: 27 Nov 2007
Posts: 117
Location: New Brunswick, Canada
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| Posted: Fri May 29, 2009 9:48 am Post subject: Oligodendrglioma |
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Hi Greg....
How are things? hope you are doing well.....I have the same kind of tumor as you and I wanted to ask a question about one post you had made..
Quoting:
***I heard that we would most likely be able to kill it altogether. I heard that if I was active, the side effects would be minimal. What I didn't hear is that the almost certain recurrence is not treatable, that the recurrance does not respond to the same treatment as the initial tumor.****
I am awaiting for another mri on my tumor and I was told by a new doctor that he could remove 70% of my tumor..I never heard anything about the treatment not responding if it grew back....I am suppose to have surgery to remove most of my tumor but I have decided I am not going to take chemo or radiation after the surgery....I was under the imppression that radiation is the last resort??
Do I have something to fear now??
~Tam~
A house is made of walls and beams;
a home is built with love and dreams. =) |
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Trigggl
Regular
Joined: 20 Dec 2004
Posts: 42
Location: LR, Ar
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| Posted: Fri May 29, 2009 2:59 pm Post subject: Re: Oligodendroglioma |
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Tammy,
If you have the same kind as me, I don't believe removing it is as important as treating it. I'm going on 5 years and the surgeon barely took out any of the tumor. It was mainly treated by chemo. I had a year of chemo and have been event free ever since. The neurosurgeons seem to think radiation is the treatment, but that's not correct.
As for if and when there is regrowth, I guess I'll cross that bridge when I come to it. I've been hearing more and more of survivors of the recurrence.
I hope that helps.
I just had an appointment with my oncologist today. My blood levels are all in healthy ranges.
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Greg --> 5 years and counting
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Tammy
Senior User
Joined: 27 Nov 2007
Posts: 117
Location: New Brunswick, Canada
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| Posted: Fri May 29, 2009 8:29 pm Post subject: Re: Oligodendroglioma |
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Hi Greg...
I am happy to hear you are doing well.It's so nice to see people who are still fighting this nasty. I have a oligodendroglioma gr2. I was told before that they could not remove it. But if you read my story you will see whats going on with me now. Thanks for responding.
_________________
~Tam-xx~
Life shouldn't be about you waiting for that nasty storm to pass, it should be all about you learning how your going to dance in the rain.. 
Diagnosed with an Oligodendroglioma Gr 2, in 2007. |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5976
Location: Tennessee
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Trigggl
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Joined: 20 Dec 2004
Posts: 42
Location: LR, Ar
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5976
Location: Tennessee
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TQ
New User
Joined: 08 Oct 2009
Posts: 1
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| Posted: Thu Oct 08, 2009 1:34 pm Post subject: Oligodendroglioma Prognosis |
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My mom had surgery for low-grade oligodendroglioma over ten years ago when it was discovered following a seizure. She had the tumor excised and was told to get an MRI every year. This year she had brain surgery again since the tumor slowly grows back.
Looking through the research it seems like the prognosis for brain tumors is not very good, and for malignant tumors we have a long way to go, however my mom does not have any serious symptoms from her tumor and is past the 10-year mark. The neurosurgeon said that every time it grows back (probably every 10 years or so) she can expect to have another surgery. Hopefully she still has many years ahead of her. |
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Trigggl
Regular
Joined: 20 Dec 2004
Posts: 42
Location: LR, Ar
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| Posted: Thu Oct 08, 2009 8:14 pm Post subject: Re: Oligodendroglioma |
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Well, I'm not the most regular of persons, but I am now past 5 years and kicking. My fist post mentioned a 10 year death sentence. I don't believe that anymore. I plan on keeping up with Brainman. I've readjusted my 401K a little more for long term and a little more worried about the car I drive. I really feel like reediting the first post. There are some things I said that aren't quite right. Well, I've had brain surgery. I'm allowed a little leeway.
I came back this time so that I could find my post and put it on Facebook for those that are looking for support. I know you guys are the right people to send others to for encouragement.
Keep up the fight. 
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Greg --> 5 years and counting
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brainman
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Location: Tennessee
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aejordan23
New User
Joined: 15 Oct 2009
Posts: 2
Location: Dallas Tx
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| Posted: Thu Oct 15, 2009 4:09 am Post subject: Someone please give a little guidance |
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| I am 28 and had a biopsy on Monday for that EXACT thing. That is exactly what the doctor said but he said he could get it out he said he could treat it with radiation. everything I have read says it will come back but I did not know it would not respond to treatment the second time.I have not let go and cried about this yet. I think reading your post pushed me over the edge and I am now crying. I just got married and we spent our one month anniversary in the neurosurgeons office. 10 years huh? He wants kids but I won't do that to them b/c my mom died early. I desperately need guidance of any kind. I am scared out of my mind. I don't understand half the things the doc says and Mike is trying not to freak out but I can tell that he is not handling this any better than me. I haven't been put on meds yet but I came home from the hospital Tuesday. |
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Trigggl
Regular
Joined: 20 Dec 2004
Posts: 42
Location: LR, Ar
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| Posted: Fri Jan 08, 2010 1:14 am Post subject: Re: Oligodendroglioma |
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aejordan23,
I hope you're still around. I also hope you got the proper support. Don't read too much into my original post because I was discouraged then and a lot of it was from incomplete information.
Sure you have to live your life with some new parameters to think about, but don't stop living. You will want to wait until after treatment to really think about whether you want kids or not. By that time you may have a better idea of the feasibility of it and a new perspective. After 5 years, I live a mostly normal life, with very minor side effects. My eyes twitch when I get tired, but overall, I still have my job as an engineer. I'm just as good at it as I was before and I might have had some memory problems, not that my memory was good to begin with, but that was easily worked around. You just got to write stuff down.
Brainman has been successfully treated twice, so there's no reason to believe the second time will be the one. In fact, when I was getting my chemo IV's, one of the volunteers was a two time survivor. My neurosurgeon was talking radiation, but the standard treatment is PCV. Let the oncologist make those decisions.
It was definitely hard on my wife. I know that it hurts the family members a lot.
Oligodendroglioma is very treatable and the more you push on the better you will be. Treatment may seem long, but eventually you'll push through it and it will be a distant memory. You may have a scar, but it should be behind the hair line.
By the way, I had another MRI a month ago and it said "no new abnormality". 5.5 years and counting.
I really need to edit my first post.
One month? Ouch. We were married for 2 years. We had a rough time a couple of months before my diagnosis. We had just got done with marriage counseling and just that morning we shared in front of the church about it.
I guess I need to search for more posts from you and see how you're doing.
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Greg --> 5 years and counting
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aejordan23
New User
Joined: 15 Oct 2009
Posts: 2
Location: Dallas Tx
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| Posted: Fri Jan 08, 2010 11:48 am Post subject: hi |
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I do not have oligodenroglioma the doc was wrong i have anaplastic astrocytoma. ANd I started a blog
http://tumorrific.blogspot.com/ |
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