Low grade astocytoma

[CAT130G]

Brainman I have been reading the forum for several weeks now and decided to share my story. It is helpful to see other people going through similar struggles and how they are dealing with it.

I had a seizure on 1-16-06 and was airlifted to the hospital; I woke up in the helicopter about 25 minutes into it. All tests were done to include the CT and MRI, and I was told it was a possible Glioma. I was put on Dilantin 4 pills every morning. The neurosurgeon and I agreed on the watch it closely approach, until it either starts growing or causing more problems. It is in the right motor skills and speech part of the brain. MRI's were scheduled at 6 months intervals, and showed no change. In August of 2007 I requested a copy of the MRI and had discussion with my neurosurgeon, and he said it had grown a tiny, tiny, tiny bit from the original scan. Nice to know the education gives him those big technical terms. In the write up attached to the cd, he presumed it to be a "low grade astrocytoma w/epicenter in the left insular region". In late January of 2008 I started having mini seizures, first problem since the original seizure. I had the Dilantin level checked it is 10.5, and an MRI with no changes. I get a nauseous feeling comes and goes real quick, and then my right hand and sometimes arm go numb. I also have difficulty speaking, this last from 30 seconds to a minute. They have been fairly consistent within about 30 minutes of going to bed at night. Some nights I will have 2 or 3 episodes but at least one per night. During the day it is more just weird feelings that only last 2-10 seconds. I have also noted some memory issues here lately, but from what I have read that could be the Dilantin. I have an appointment 3-31-08 with a neurologist to discuss different dosage or a different medicine.

Again I thank everone for sharing your stories, you are in my prayers.

CAT130G

[brainman]

CAT130G, if you have read my story, you already know that our stories are remarkably similar with only a few differences.

My first sign was also seizures. However, unlike yours, mine have always been minor (like yours are now)... mainly loss of speech and right sided arm/hand control. I never fully passed out. I always knew exactly what I wanted to say; I just could not say it. I too ways started on Dilantin. However, it did not totally control my seizures so they added Phenobarbital and that took care of the seizures for over 10 years. I would ask my neurologist if this would be appropriate if I were you.

The other major difference is that my medical team wanted to do a biopsy to make sure of their diagnosis. It was an astrocytoma grade II. My surgeon had my authorization to take it all out but opted not to when he saw that it involved my motor strip and could possibly result in my not being able to talk or use my right arm.

The third major difference is that I was started on chemotherapy (PCV) shortly after recovering from the biopsy. I would ask the doctor about doing a biopsy just to make sure. The dangers are minimal (same as for any surgery) and the recovery time is very fast (I was in the hospital for less than 3 days following the biopsy).

I am glad you decided to come out of the shadows and to tell your story . You might want to use this topic as your main place to post updates and use a link to it in your signature block... like mine.

You are in my thoughts and prayers.

[CAT130G]

I had the nurologist appointment today, she is starting me on Keppra. After we see what changes with it, she will tapper me off of the dilantin. She also scheduled a EEG, so we will see what that tells them. Has anyone transfered from Dilantin to Keppra? Any major side effects?

[brainman]

I started on Dilantin and Phenobarbital and stayed on that for 1992 until 2005 when my cancer recurred and the Dilantin could not control the seizures anymore. They changed my over to Keppra at that point. I am still on it with no side effects. Switching over was quite easy. No major or minor side effects. The only real problem was the driving restriction :P. Had to remain seizure free for six month before she would let me drive.

Lots of luck.

[ksplat]

Hello CAT

Welcome to our forum....thankyou for sharing your story. Sharing your story, feelings, treatments & information will be a catalyst & inspiration for other sufferers & their carers here on this forum.
I am not familiar with the illness you have. I have a Bro with GBMIV who has survived nearly 14mths now.
Jim (Brainman) is the GURU on this thread, we are his minnions (sp??)!

Thinking of you, Angie.

[CAT130G]

I had the two hour EEG this morning. I had a right arm seizure during the test. Before I could get back to the office I received a call that the four day take home EEG was being moved from the 21st to today. I do not know what the doctor saw but at least I will not be waiting until the 29th for all of the results. I will keep you posted.

Jim what dosage of Keppra do you take? How long did they take to transfer from the Dilantin to the Keppra?

Greg

[brainman]

I am glad you do not have to wait to get the results. The 21st is a long time to wait.

I am on 1 500mg pill a day (down from 1 pill twice a day). It took me just a few weeks to get off of the Dilatin. I am actually on Keppra and Lamical for a few more weeks (until I run out of my current Keppra prescription). Lamical took about one month to transition too. But since it seems to be working, my neurologist want to see if it works without the Keppra. Oh, I am also on Phenobarbital.

[CAT130G]

Saw the neurologist again yesterday, the EEG's show the deep tissue activity in the tumor location. They are not full blow seizures, but more the warning symptoms. For the next 5 days we are at 750mg Keppra two times a day. Then next Tuesday go up to 1000mg twice a day. So far no side effects.

The first day I took the 500mg in the morning and 750 in the evening I did not have one. Every other day I have had the same since January one or two a day. About 95% within 5 to 10 minutes of going to bed, right as I am going in to the sleep mode.

She is leaving me on the Dilantin until we get the Keppra working, and then will taper off it.

I mentioned that you had remained on the Phenobarbital all this time, and her comment was it is an old medicine they are trying to get away from. Keppra is the new one and should work. I do not care if its old or new I just want the episodes to end. Well I guess that's enough venting for today.

[brainman]

The only reason I am still on Phenobarbital is that in the past when my neurologist tried to discontinue it, I had a seizure within a day or two... even when the other medications were way above therapeutic levels. Each of us are so different in terms of the very nature and cause of our seizures that it really is difficult to compary our medication requirements.

Continue to do well.

[CAT130G]

I started the 1000mg Keppra twice yesterday, still had the same symptoms last night. I know that the 3000mg is max daily dose, so I hope this kicks in soon.

My issue with the doctor was she immediately dismissed the other medications because of the length of time it has been available. I do not care how long the medicine has been out, if there is one that works lets use it.

I guess that takes care of the venting today, just tired of having the seizures.

[brainman]

Cat, yes I agree that your doctor's response is rather unusual. It has been my experience that most doctors will at least try the old, cheaper, and proven to be effective before going to new, more expensive, and not yet proven over a long period of time. However, the older anti-seizure medications were life-altering because they tended to make people (like me) drowsy all the time and other side-effects. Keppra does not cause any side-effects on me. If your insurance does not cover all of the cost and you need to save on money, you could tell that to your doctor and maybe she would agree to try you on something else... especially since 1000mg is not fully working.

As always, your are in my thoughts and prayers.

[CAT130G]

I have been maxed out (3000 mg a day) on Keppra since the 8th, still no help. For the last two weeks I have been averaging two episodes a day. I have gone back to 400 mg of Dilantin as well. I have a MRI scheduled for the 20th. The neurologist keeps saying that it has to be some pressure being placed on the right motor skills area. That makes since we will see what the MRI shows.

[artaran]

Cat,

Have you seen a neuro-oncologist yet? It seems that even if the tumor is in a location that makes surgery and radiation difficult, you might consider beginning chemo to shrink the tumor in order to ease your symptoms. Has your doctor explained why this option hasn't been considered yet?

I'd get a second opinion from a neuro-oncologist in order to see what else can be done.

Wishing you the best of Luck,

Arleen

[Derek]

My wife is on Lamicatal 100mg bid for seizures (which was not actually a presenting sign for the original glioma diagnosis, as she had them later), and it seems to be working well.
Like all drugs you can't stop one suddenly but have to wean off one and onto another, as refractory epilepsy can be considerably worse than the original seizures.
I have actually seen this happen in dogs ( I am a veterinarian by profession).
Many of these anti-seizure drugs are also used in the psychiatry field for "mood disorders" , and I believe can also cause a psychological, as well as physiological dependance on the drug.
We went away recently to Brisbane, and my wife ran out of her drugs, which caused her to become extremely agitated and unstable.
Keppra did not seem to cause such a profound reaction from withdrawal.
This was more of a concern than actually having another seizure itself.
Unfortunately any side-effects of any of these drugs are the lesser of two evils.
Derek

[CAT130G]

MRI results show no change, that is a good thing. I did not have episodes Sun., Tue., and Wen. last week, so I thought the medicine was finally kicking in. This Sunday and Monday I had 3 episodes each day. So we are still trying to find the right balance of medicines.