One patient with glioblastoma still alive nine years later
by slbbw on Thu Oct 25, 2012 07:03 PM
My husband is finally off treatment. Yipee! his Dx was oligo/astro III. His symptom was a seizure, but itis the only one he has ever had and he hasn't had one since (14months). When we spoke to his neurologist some time back his response was that he would be on keppra for life. That it was safer. This seemed very hand wavy to me and I am looking for others experiences. For those who have been off treatment, did you stay on your ant-seizure indefinitely. Was there a protocol for stopping it? His neurologist has never ordered an eeg. Just said you had a seizure, in a high density area its safer to stay on the meds. Does this sound right? I was fine with him being on it during treatment, since they could be affecting his brain. Now that he is off I wonder if teh keppra is necessary. He seems to have little side effects, but I know he would rather not be on it.
by siblingof on Thu Oct 25, 2012 10:46 PM
by RobinMB on Fri Oct 26, 2012 12:53 AM
Hi! My husband was diagnosed with GBM Stage IV in February '12. Although he hasn't had any seizures, he has been on Keppra from day 1. The doctors believe that keeping him on Keppra is preventing any potential seizures that may occur. My husband thinks the Keppra makes him tired, and he says that he thinks it makes his muscles ache a bit. He had a second craniotomy at the end of August to remove two more 1cm. tumors. This could also be the cause of his fatigue. But, other than that, he seems to be doing quite well. His tumor was right frontal lobe and he doesn't have any deficits from both surgeries. We are very scared, and we pray more than ever that a breakthrough will take place for a cure soon! I'm glad to hear that your husband isn't having any side effects. I wish both of you the best!!!
by karynk on Fri Oct 26, 2012 02:55 AM
If his symptom was a seizure that resulted in his diagnosis. I would stay on the Keppra. My husband presented with seizures, and has been on anti-seizure meds for over 11 yrs.
by zookeeper on Sat Oct 27, 2012 12:52 AM
My mom was diagnosed with an AA 3 a little more than three years ago. (yay!!) Her initial symptom was also a seizure. She was also told she would need to be on the seizure med (keppra) for the rest of her life. Well, she's stubborn. lol. She found an epilepsy neurologist who did and eeg and said everything looked fine. She could wean off the meds, but not drive for 6 months. That was over a year ago. She's not had any seizure activity at all and feels like she has her life back. The meds really zapped here energy!
by loveiseternal on Sat Oct 27, 2012 10:51 PM
My husband's presenting symptom of his GBM was a seizure. He was on Keppra for his entire life after that (28 months) except a couple of days at the very end when he could no longer swalllow.
Believe it or not, even though he was in a coma and getting morphine every hour, he still seized when he went off Keppra.
I would probably opt to stay on it to be on the safe side. If he is still driving alot I would definitely stay on it.
God bless, Sally
by slbbw on Wed Oct 31, 2012 06:38 PM
Zookeeper, your mom had to not drive for 6 onths after going off the meds?
To answer the other questions, my husband doesn't drive a ton, but he does drive to work probably 1-2 days a week and he usually does some independent driving on the weekend. We have a small child, and splitting driving duties, makes it much more tolerable. We are going into this with the idea he will be in remission for many many years. Being on a drug he may or may not need for the next 30 years without even trying to check or determine an actual needs seems excessive. I know he originally complained of fatigue when he started the keppra, I just think he has gotten used to it, but would feel much better off of it.
I just don't like the idea that he is on this drug in case. His tumor is gone for now, and we are tracking it with MRIs. It seems liek the only in case would be if teh tumor came back, which we would know about from the MRI. I think his next neuro appointment is in 4 months. if his scans are still clear then, I may ask him to push the doc a bit more.
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