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ksplat
Super Moderator
Joined: 26 Apr 2007
Posts: 576
Location: Brisbane, Australia
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 Posted: Tue May 27, 2008 7:32 pm Post subject: Re: Low grade astocytoma |
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Dear Cat
Very pleasing to read there have been no changes on your recent MRI.
I do hope a balance is found soon with the anit-seizure meds.
I continue to keep you in my prayers & thoughts.
Cheers, Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227
"Without Faith We Have Nothing" |
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CAT130G
Regular
Joined: 26 Feb 2008
Posts: 20
Location: Texas
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| Posted: Wed Aug 13, 2008 9:23 am Post subject: Re: Low grade astocytoma |
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I have not posted in awhile, thought I would give an update. After several meetings with the neurologist we are giving a six month try of 400 mg Dilantin, and 3000 mg of Keppra. I have more days now without episodes then with, but am still having episodes.
On occasion since January 08 I have had a feeling that I missed a step or tripped put can see that the step was normal, it just does not feel that way. Just a little hiccup in the wiring I suppose, has any one else had this?
Overall things are going well, and I am not scheduled for another MRI until a year from the one in May.
I pray for you all as we travel this path together.
Greg
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CAT130G
Regular
Joined: 26 Feb 2008
Posts: 20
Location: Texas
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| Posted: Sun Sep 07, 2008 11:51 am Post subject: Re: Low grade astocytoma |
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Just as with anything else in life you get involved with, you tend to find other people around you going through the same thing.
I have a co-worker whose son J... (Late 20's) has been diagnosed with an 8cm round tumor in the left frontal lobe. He had a needle biopsy on the 4th and is awaiting results early this week.
And then a member of my church her brother who lost his 6 or 7 year daughter last year to a brain tumor. In June he was diagnosed himself with one.
Please keep these two men in your thoughts and prayers. As I do with everyone who post on this site.
Cat130G
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ksplat
Super Moderator
Joined: 26 Apr 2007
Posts: 576
Location: Brisbane, Australia
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| Posted: Sun Sep 07, 2008 4:42 pm Post subject: Re: Low grade astocytoma |
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Hello Greg
We've had a similar experience since my Bro has been diagnosed. All these other cases "coming to light" & people that are close to you. It's quite unbelievable!
I will keep you & yours in my prayers. Prayer gives strength to the weak, hope to the hopeless, well you know the rest!
Cheers, Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227
"Without Faith We Have Nothing" |
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CAT130G
Regular
Joined: 26 Feb 2008
Posts: 20
Location: Texas
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| Posted: Tue May 05, 2009 7:44 pm Post subject: Re: Low grade astocytoma |
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Long due Update, I have had two MRI's since last post each with some slight growth. Tried to tapper off Dilantin and up and Keppra, that did not work.
Have been at 3000mg Keppra and 400mg Dilantin for about 1 year now.
I have slowly started to have more days with than days without, and the chart I keep still looks like a saw tooth ups and downs just not down to zero.
Talked to second nerulogist today, and was finally convinced that I have pushed the driving far enough and handed the keys over to my wife. My job does not require a lot of driving, so with some rides from co-workers and church memebers I will still be able to work.
I am going to increase the Keppra to 3500mg a day and then go up 250mg in two weeks if the 3500mg does not change anything. I have seen several post of how long before surgery, I have been since 1-16-06 and still no holes in my head or chemo. I am going to wait until I have no option but surgery, before I risk loosing motor skills or speech.
95% percent of my focal seizures are at night in bed, have had a few more in the day in the last few months.
The Lord knows what is going on and I give him praise for all that he has made me grow in the last 3 1/2 years. The old addage of 2x4 up side the head, rings true.
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5977
Location: Tennessee
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CAT130G
Regular
Joined: 26 Feb 2008
Posts: 20
Location: Texas
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| Posted: Wed Jun 24, 2009 11:10 am Post subject: Re: Low grade astocytoma |
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 I am up to 4000mg Keppra a day and still holding at 400mg Dilantin. The good news is I went 8 days with zero episodes 1 mild one and now two more zeros. That is the longest stretch of zero days since November, I like seeing the more days without then with. So maybe I will be able to start driving again if we get a month or so of consistent zeros. Well I better get back to work, will update later.
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CAT130G
Regular
Joined: 26 Feb 2008
Posts: 20
Location: Texas
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| Posted: Fri Jul 31, 2009 8:18 am Post subject: Re: Low grade astocytoma |
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Well the 8 days mentioned in the last post was the last of the zeroes, I started having more up to four 30 second to 1 minute episodes a day. I was also having the pre-warning signs a taste in my mouth a numb right face and numbness tingle in the right arm on and off all day. It made it hard to concentrate not knowing when I might have one.
As a result of more seizures I went up to 4500mg two weeks ago and 5000mg yesterday on the Keppra. I feel better today and it is one of the first days in several weeks that I have not had a strange taste in my mouth.
The doctor I saw yesterday along with a second opinion he went and received during our visit agrees to try the medicine as long as possible to prevent the seizures. When that stops working we will do a needle biopsy, and either chemo, radiation and then surgery.
All of the doctors I have seen have agreed that the tumor being in my speech and right motor skills is better left alone until it prevents me from working. That point is getting closer, I am an Engineer and spend 98% of my time in the office, but the 2% in the field is what will get difficult with more seizures.
Well back to work, thanks for letting me rant on.
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brainman
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CAT130G
Regular
Joined: 26 Feb 2008
Posts: 20
Location: Texas
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| Posted: Wed Jan 27, 2010 6:07 pm Post subject: Re: Low grade astocytoma |
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Had annual MRI today, still no change in shape or size
January 16th was the four year anniversary of finding the tumor, and having the only Grand Mal seizure.
I am taking 400mg Dilantin 5 days a week and 300mg 2 days a week. I am also taking 6000 mg of Keppra a day now.
Had real good Fall (Sept - Dec) got to drive for a few months, January has picked up on the mini seizures so not been driving for the last three weeks. I go see the neurologist in March to discuss the meds and keep trying to control the seizures.
But the Lord is good, I am still working 40 hour job as Civil Engineer, singing in the Church choir, teaching 7th & 8th grade boys on Sundays, and serving as a Deacon.
Thanks for all the prayers and continued support from this site!!!!
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brainman
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Location: Tennessee
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javigm123
New User
Joined: 06 Mar 2010
Posts: 5
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| Posted: Sun Mar 07, 2010 12:41 am Post subject: Hi Cat130G |
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Hi Cat130G,
I just read the thread and found your attitude and progress encouraging. i am 26 and was just diagnosed with a low gr. astro in my right thalamus last month. They say ive prob had it since birth/infancy!
From what I understand besides the seizure meds, you have not had a biopsy, surgery, chemo nor radiation. Is this correct?
Brainman you waited 13 yrs before your first surgery? Thanks for sharing your story on the forum, its inspiring.
The docs mentioned that waiting and living is a viable option but also said it is best to get a biopsy just to be prepared. My only symptoms have been visual disturbances and morning headaches. So i am virtually intact and don't want to risk my brain unless my life is at risk.
Here's to our recoveries and a near future cure. Look forward to exchanging experiences.
take care,
javi
[quote="CAT130G"]Had annual MRI today, still no change in shape or size
January 16th was the four year anniversary of finding the tumor, and having the only Grand Mal seizure.
I am taking 400mg Dilantin 5 days a week and 300mg 2 days a week. I am also taking 6000 mg of Keppra a day now.
Had real good Fall (Sept - Dec) got to drive for a few months, January has picked up on the mini seizures so not been driving for the last three weeks. I go see the neurologist in March to discuss the meds and keep trying to control the seizures.
But the Lord is good, I am still working 40 hour job as Civil Engineer, singing in the Church choir, teaching 7th & 8th grade boys on Sundays, and serving as a Deacon.
Thanks for all the prayers and continued support from this site!!!![/quote] |
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CAT130G
Regular
Joined: 26 Feb 2008
Posts: 20
Location: Texas
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| Posted: Tue Mar 09, 2010 9:41 am Post subject: Re: Low grade astocytoma |
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Javi,
You are correct I have not any holes in the head to date. All I have done is treat the seizures with anti-seizure meds. The newest being Topamax 100 mg, which got me 22 days seizure free. Then we had a three day youth weekend at church and the exhaustion got me, then a week later I had one yesterday. Overall I have had a lot more energy and not felt as tired on the topamax, and a lot less seizures! I am still on the other two meds as well but no holes. Nothing especially on the lower grade tumors is an option. Until I can no longer function enough to perform my job to the level expected I plan to keep treating the seizures. At the point that I can not function to the standard required I will discus the surgery option at MD Anderson in Houston.
This site is a great input and has some positive people going through the same thing you are trust in it. But more importantly trust in God, it is through my faith in him that I have such peace.
Cat130G
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javigm123
New User
Joined: 06 Mar 2010
Posts: 5
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| Posted: Tue Mar 09, 2010 10:36 pm Post subject: for Cat and Brainman |
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Hi Cat and Brainman,
I've read that sometimes its best to not perform surgery on low grade astros because it may prompt malignant transformation. Have you heard something like that? Brainman we need you to weigh in as well|! But on the other hand doesn't waiting to get surgery done increase the possibility of the tumor cells becoming diffused, making it harder to remove the whole tumor which would have a good chance of curing it.
Would be great to hear your takes.
have a good one.
[quote="CAT130G"]Javi,
You are correct I have not any holes in the head to date. All I have done is treat the seizures with anti-seizure meds. The newest being Topamax 100 mg, which got me 22 days seizure free. Then we had a three day youth weekend at church and the exhaustion got me, then a week later I had one yesterday. Overall I have had a lot more energy and not felt as tired on the topamax, and a lot less seizures! I am still on the other two meds as well but no holes. Nothing especially on the lower grade tumors is an option. Until I can no longer function enough to perform my job to the level expected I plan to keep treating the seizures. At the point that I can not function to the standard required I will discus the surgery option at MD Anderson in Houston.
This site is a great input and has some positive people going through the same thing you are trust in it. But more importantly trust in God, it is through my faith in him that I have such peace.
Cat130G[/quote] |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5977
Location: Tennessee
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| Posted: Wed Mar 10, 2010 11:09 am Post subject: Re: Low grade astocytoma |
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Hi javigm123. You ask a very complicated question. The answer of surgery or no surgery depends on a number of factors:
- Size of the tumor: Obviously, the smaller the tumor the more of it can be safely removed.
- Location: As with the size, it the tumor is in a dangerous place and will leave the person damaged some how, doctors will often recommend a "wait and see" approach. My doctor did that originally. When it once more started to grow and cause problems he recommend surgery.
- Specific mix of cancer grades: If a person is a boarderline case (mostly grade II with some grade III or the other way around) they might also recommend a wait and see approach.
- Problems currently cause by the tumor: If the tumor is already causing significant losses, they might recommend removal to see it that helps.
- Overall heath of the patient: Like in 1 and 4, if the person has other health problems (such as respiratory problems) they might recommend a wait and see approach.
I am sure there are other thing they take into account but these are enough for you to see you complicate this decision can be. I didn't even mention the patients wishes in the matter. Yes, there is a possibility of the tumor "upgrading". Mine has already done that from a high grade II to a low grade III.
In all the above, by "wait and see approach" in mean no surgery but frequent MRIs to make use the tumor is not growing. It might also not affect a decision to use Chemo or Radiation.
Unlike other cancers, doing surgery does not increase the risk of a stay cell moving to another part of the brain. Most common is a local recurrence due to the difficulty in removing all of the cancer cells during the original surgery.
A lot of info to absorb... sorry 
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54
FaceBook: http://www.facebook.com/James.Hawking54?ref=profile
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