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olbaidhh
New User
Joined: 09 Apr 2008
Posts: 7
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 Posted: Wed Apr 09, 2008 3:42 pm Post subject: Keppra ?'s |
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ok long story short...
My father had epilepsy in his adult life and died of a brain tumor at 42.
I developed a brain tumor at 38, it was a PNET tumor that was removed, I did radiation (head and Spine) but no chemo, all is great very happy to be alive!
accept...
After the surgery the neurologist put me on Keppra.
I am not sure if it is the radiation or the Keppra but I am having some serious side effects from one of the two.
Radiation ended the week of Thanksgiving .... so according to the radiologist I should not be experiencing any of the affects of it at this point.
That leaves the only med I am on... Keppra.
I have the extreme sleepiness, tiredness, loss of coordiantion and weakness but no other affects like hostility, depression etc. so I feel lucky, nothing too bad but at night I get tired easy.
BUT.... I do have loss of appetite. I CANT EAT.
Food tastes bad, smells even worse, I can keep maybe 9 out of 10 meals down. I have lost 23 pounds in the last month alone.
I did read the 3% of people on Keppra testing developed anorexia.
I started with 1000mg 2 times a day, the doc tapered me to 500mg 2 times a day, now he has me at 500mg one time a day at night.
The thought here was I would be hungry by mid day since he said Keppra only stays in my system for about 8 hours. (my thought is what is the point...) so i have no coverage during the day when I drive my kids to school etc. why even bother?
I am wondering if anyone else has had issues eating and Keppra or it if is still issues with the brain tumor removal or radiation.
I am going to get a second opinion about it as well since it makes no sense to even really take it.
I have had 2 EEG's and they test great no sezuires, I also have had none since the operation.
Thanks for your time. |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 3319
Location: Tennessee
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| Posted: Wed Apr 09, 2008 6:24 pm Post subject: Re: Keppra ?'s |
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olbaidhh, I am very sorry about your cancer. I too have a history of brain cancer and am on Keppra... same dosage as you... 500mg one time a day at bedtime. I do have the sleepiness and loss of balance. However, I have not had the weight loss or the loss of appetite. Could something else be going on? I assume your own medical team knows about these issues, right? If not, you really should talk to them... a 23 lbs weight loss in one month is very disturbing to me.
You are definitely in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/ |
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olbaidhh
New User
Joined: 09 Apr 2008
Posts: 7
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| Posted: Thu Apr 10, 2008 9:06 am Post subject: Re: Keppra ?'s |
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Jim,
thanks for the thoughts and prayers.
I am going to go back in and talk with another doctor, it may be my operation or radiation and not the Keppra. That is what I am trying to figure out.
I have had no sezuires to date and from what I understand the doc said that the dose of Keppra would only stay in my system for 8 hours so what is the difference really if I take it at night?
Some more background on me... (I read your signature history obviously)
I had a PNET tumor (about the size of a golf ball) on the right frontal lobe above the ear. They say it RESEMBLES a PNET (normally found in kids) but both the St. Paul oncologist and the Mayo Clinic oncology lab could not determine the actual tumor type but the cell structure closely resembles that of a PNET. So I dont know what I really had (maybe its a new one they will name after me...lol)
But that is good news since PNET tumors are fairly easily removed and tend to stay gone. |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 3319
Location: Tennessee
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olbaidhh
New User
Joined: 09 Apr 2008
Posts: 7
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| Posted: Thu Apr 10, 2008 11:54 am Post subject: PNET Primitive neuroectodermal tumor |
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Primitive Neuroectodermal Tumor (PNET) is a soft tissue sarcoma classically described under small round blue cell tumors (SRBCT). There is considerable clinical and histologic overlap between this tumor and Ewing's sarcoma (ES). For many years, pathologists struggled to make a diagnostic distinction. Now with sophisticated molecular biological analysis, it turns out that both tumors share a common and unique chromosomal translocation. Most investigators now believe that Ewing's sarcoma and PNET are different morphological expressions of one tumor type. In general, Ewing's sarcoma arises within the bone while PNET arises within soft tissues. However, there are overlap cases of Ewing's sarcoma arising within soft tissue (Extraosseous Ewing's Sarcoma) and PNET arising within the bone. Under the microscope, the tumors share a considerable homology though there are usually more neuroendocrine features with PNET. Ewing's sarcoma is thought to be a more undifferentiated tumor. Though data is conflicting, some investigators believe ES to have a slightly better prognosis.
They also say the PNET generally form on the primary cortex mine was frontal lobe... so. They really do not know what it was. |
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plugh
Regular
Joined: 18 Oct 2007
Posts: 15
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| Posted: Thu Apr 10, 2008 2:46 pm Post subject: Re: Keppra ?'s |
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olbaidhh
Sorry for your situation. My experience with Keppra (after Grade II OLI removal) has been a little differrent. No witgh lose or appetite issues but I seem to be very restless at night and rarely sleep right through - used to be I would be asleep as soon as my head hit the pillow and stayed that way until blasted awake by the alarm. I was on 500MG twice a day. After complaining cut to 500MG once a day (half at night, half at bedtime). This seems to have helped considerably though not perfect. I too have asked why bother (especially when you say it is only in your system for a few hours). I was told that I can come off it a year after surgey if no seizures. Don't want to run the risk of having even a mild seizure and lose driving priviliges again. |
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olbaidhh
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Joined: 09 Apr 2008
Posts: 7
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| Posted: Thu Apr 10, 2008 2:53 pm Post subject: Re: Keppra ?'s |
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[quote="plugh"]olbaidhh
Sorry for your situation. My experience with Keppra (after Grade II OLI removal) has been a little differrent. No witgh lose or appetite issues but I seem to be very restless at night and rarely sleep right through - used to be I would be asleep as soon as my head hit the pillow and stayed that way until blasted awake by the alarm. I was on 500MG twice a day. After complaining cut to 500MG once a day (half at night, half at bedtime). This seems to have helped considerably though not perfect. I too have asked why bother (especially when you say it is only in your system for a few hours). I was told that I can come off it a year after surgey if no seizures. Don't want to run the risk of having even a mild seizure and lose driving priviliges again.[/quote]
I was told the same so... its getting better since I changed to the night only that is for sure. I eat more everyday. So hopefully I will be off it in a year as well. |
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brainman
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olbaidhh
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Joined: 09 Apr 2008
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| Posted: Thu Apr 10, 2008 3:14 pm Post subject: Re: Keppra ?'s |
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| been off roids since Nov. - Dec. |
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brainman
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olbaidhh
New User
Joined: 09 Apr 2008
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| Posted: Mon Apr 21, 2008 8:33 am Post subject: Re: Keppra ?'s |
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Jim,
Again thank you so much for the thoughts and prayers.
I FEEL GREAT! I am finally getting back to normal (almost) I feel about 90% + right now.
I think switching to the Keppra only at night really helped. I have an appetite back and more energy etc.
Maybe all the radiation is gone now as well ??? can't say for sure but I am sure its just the Keppra.
Spring might have something to do with it as well!!! |
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tejay3
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Joined: 15 Jun 2008
Posts: 4
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| Posted: Sun Jun 15, 2008 8:02 pm Post subject: my husband is on keppra |
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my husband is on keppra, 2000 mg per day. he is always sleepy and has major mood swings, like wanting to kill himself and he is depressed and says at times he is tired of living, he has anaplastic astrocytoma grade 3 he is on steroids as well and takes temodal and has radiation theraphy daily mon thru fri. i stay nervous all the time worring about him and his mood swings. my husband had one grand mal seziure and has not had any since. i worry that this is a bit much. plus he was doing fine with 1000 mg per day. any help or advice would be greatly appreciate.
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My name is Tammy and my Husband was recently diagnosed with grade 3 anaplastic astrocytoma |
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olbaidhh
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Joined: 09 Apr 2008
Posts: 7
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| Posted: Mon Jun 16, 2008 8:30 am Post subject: Re: Keppra ?'s |
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I am not sure what to do other then ask your doctor about going down again to 1000mg.
One thing I can tell you for sure is get a second opinion on everything. I would probably still be on Keppra if it were not for a second opinion. I have been off now for 2 almost 3 months and I fell like I am myself again.
One more thing ....switching to just taking it at night helped out a great deal as well.
I hope everything works out for you... |
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kytallgirl
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Joined: 28 Jun 2008
Posts: 9
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| Posted: Sun Jul 06, 2008 9:15 am Post subject: (pheriphal) P-NETs |
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I have read alot of what you were writing about in regards to P-NETS vs Ewings. My daughter-in-law was diagnosed with (pheriphal) P-NET in April 2008. The mass is huge measuring 15 x 121/2 inches! My understanding is that pheriphal means it is not in her bones, brain or blood. It's more of a soft tissue cancer that looks like Ewings. With so many unknowns, treatment can be tricky. Mass is inoparable at this time having wrapped around a major artery leading to small intestines. Since she is so young (22) they have started agressive chemo with 48 weeks scheduled. Even before chemo, she has been severely sick with nausua, vomiting, extreme weight loss, pain ect...I wonder how she will get thru chemo as she is already in such a weakened state but she is young and strong so we are just praying for the best possible outcome.
There seems to be so little info and even people who have delt with this that I continue to search for answers.
God Bless ALL of you!
Sherron
DIL diagnosed with (pheriphal) P-NETS April 2008 |
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