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ksplat
Super Moderator
Joined: 26 Apr 2007
Posts: 577
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: 18
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: 18
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: 577
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: 18
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: 5575
Location: Tennessee
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| Posted: Wed May 06, 2009 5:30 am Post subject: Re: Low grade astocytoma |
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CAT!!! Wonderful to hear from you! I am sorry that your cancer continues to grow. That is surprising for a low grade astrocytoma (unless they have upgraded it). I am also sorry about your continuing seizures... even if they are "only" focal seizures. I know all about them. I have taken Kepra, Dilantin, Phenobarbital, and Lamictal at various times.
Hang in there friend and update us every now and again.
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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 |
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CAT130G
Regular
Joined: 26 Feb 2008
Posts: 18
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: 18
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
Site Admin
Joined: 13 Oct 2005
Posts: 5575
Location: Tennessee
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