Hello, and first question! Keppra...

Hello all,

Been reading the boards for several weeks now (almost daily!) - but it seems like every time I think of a question (aka, reason to post!), I find that someone has already answered it.  But I'm going to jump in today, and introduce myself - my dad (61) was diagnosed with GBM 8/5/09 and has recently completed the standard 6 wks rad/Temodar plus Avastin.  We just had a good MRI on Tuesday, the tumor has shrunk slightly! More than I had dared hoped for, honestly...

However, dad had a very, very small seizure (eye & arm twitching plus some aphasia), so our NO has put him on Keppra.  He started Wednesday morning at 500mg 2x a day.  He immediately became extremely fatigued - had to nap that afternoon (very unusual), and the fatigue has gotten worse.  My question to everyone out there on Keppra is this:  Do you see a tolerance build up after a couple of weeks on the medication? This was the first seizure - he had not had any prior to dx or since, and we really debated the necessity of putting him on it.  I think he would like to stop taking it, as a "quality of life" issue.  He's really in good shape right now - tolerated chemo/rad very well, not too many deficits from the tumor itself, but the fatigue is pretty debilitating.  During what should be a really good week (following the excellent MRI news), he's pretty depressed about his lack of energy and inability to enjoy former activities.

Any thoughts or advice would be appreciated!

Bev

daughter of Craig, 61 yo GBMIV dx 8/5/09

On Nov 06, 2009 4:22 PM mbmom wrote:

Hello all,

Been reading the boards for several weeks now (almost daily!) - but it seems like every time I think of a question (aka, reason to post!), I find that someone has already answered it.  But I'm going to jump in today, and introduce myself - my dad (61) was diagnosed with GBM 8/5/09 and has recently completed the standard 6 wks rad/Temodar plus Avastin.  We just had a good MRI on Tuesday, the tumor has shrunk slightly! More than I had dared hoped for, honestly...

However, dad had a very, very small seizure (eye & arm twitching plus some aphasia), so our NO has put him on Keppra.  He started Wednesday morning at 500mg 2x a day.  He immediately became extremely fatigued - had to nap that afternoon (very unusual), and the fatigue has gotten worse.  My question to everyone out there on Keppra is this:  Do you see a tolerance build up after a couple of weeks on the medication? This was the first seizure - he had not had any prior to dx or since, and we really debated the necessity of putting him on it.  I think he would like to stop taking it, as a "quality of life" issue.  He's really in good shape right now - tolerated chemo/rad very well, not too many deficits from the tumor itself, but the fatigue is pretty debilitating.  During what should be a really good week (following the excellent MRI news), he's pretty depressed about his lack of energy and inability to enjoy former activities.

Any thoughts or advice would be appreciated!

Bev

daughter of Craig, 61 yo GBMIV dx 8/5/09

Bev,
Sorry about your dad. This truly is a family disease and you are wonderful daughter asking all the right questions.  My  husband was on Keppra for a while but did not experience any additional fatigue from it. I will tell you that the radiation really knocks them out but it takes time for the fatigue to actually set in. Perhaps his exhaustion is cumulative between the radiation, Temodar, Avastin and now a new drug being introduced. Cancer itself is tiring. Did he have surgery? Tell him to hang in there and remind him that his body has just gone through a lot.

Best of luck!

Holly

Husband dx GBM IV 2/09

Thanks, Holly -

The post-radiation fatigue had not occurred to me - great point - he finished radiation on 10/12, so it's been not quite a month.  He didn't have surgery other than the initial biopsy - his tumor is just too close to the motor strip.  But I also wonder if there isn't just some emotional exhaustion because we had (not deliberately, of course) built up so much suspense around this weeks MRI - the first since radiation.  No matter what the results, I think he was bound to be wiped out after holding so much tension waiting for it.  I know I was/am!  Got to work more on living in the moment, instead of from MRI to MRI. 

Thanks for the thoughts!

Though I've never suffered a seizure (that I'm aware of), I've been on 1000 mgs per day of Keppra since my diagnosis in Sept. 2007. Yes, I believe I have built up a tolerance to the sedative effects of the drug, so hang in there. It should improve dramatically.

Hi Bev,

The radiation side effects might not even PEAK until 8-10 weeks after the last treatment. Sure was true with my son the zombie. He's pretty peppy now.

Best wishes!
Sarah

 www.abta.org:

Early Delayed (Sub Acute) Reactions

This group of reactions occurs a few weeks to a few months after completion of therapy, most commonly between one and three months. Symptoms include loss of appetite, sleepiness, lack of energy, as well as an increase in pre-existing neurologic symptoms.

Some of these reactions are thought to be due to a temporary disruption of myelin formation (demyelination). Myelin is a substance that insulates the nerves and speeds up nerve impulses. The symptoms are usually temporary lasting about six weeks, the length of time it takes for myelin to repair itself. In some cases, however, recovery may take several months.

Since the brain lacks an effective lymph system, dead tumor cells are cleared away very slowly. A rapid build-up of dead cells can lead to swelling which might produce a temporary increase of symptoms. CT scans taken shortly after treatment might show changes that are difficult to distinguish from tumor growth. Repeat CT or MRI scans are often necessary to clarify the cause of the symptoms.

Management of early delayed reactions

Notify your radiation oncologist or your primary doctor if you notice any of the symptoms listed. Early delayed reactions are usually treated with steroids and most of these reactions are self-limiting, going away with minimal treatment. However, they can become life-threatening if they aren't treated properly. It is very important for you to tell your doctor if you have any of these reactions so that he/she can properly monitor and treat you.

Leukoencephalopathy is a type of early delayed reaction affecting the white matter (mylenated tissue) of the brain. It can occur when dead tumor cells, radiation therapy, or chemotherapy drugs irritate the white matter. The severity of the symptoms increases with the amount of damage. Leukoencephalopathy may be reversible and is usually treated with steroids. Some researchers are attempting to treat this effect with hyperoxygenation therapy in the hope that increasing the amounts of oxygen in the brain will aid in healing brain cells which may not be as seriously damaged as others.

Late Reactions

These reactions are due to changes in the white matter and death of brain tissue caused by radiation-damaged blood vessels. Symptoms can occur months to years after therapy is completed. These long-term effects are permanent and can be progressive. Symptoms vary from mild to severe and include: decreased intellect, memory impairment, confusion, personality changes, and alteration of the normal function of the area irradiated.

It is sometimes difficult to diagnose late delayed reactions. CT and MRI scans are often unable to distinguish between new tumor growth and radiation changes. PET scanning might be helpful, but is not totally accurate. A biopsy of the area may be the only way to determine whether you have radiation changes to your brain or new tumor growth.

Management of late delayed reactions

Mild reactions may be treated with steroids. Severe reactions such as tumor necrosis may require surgery to remove the dead tissue. Some researchers are investigating the possible benefits of hyperoxgenation therapy in the hope that increasing the amounts of oxygen in the brain will aid in healing brain cells which may not be a seriously damaged as others. Still other researchers have attempted to treat the brain with blood thinners, such as heparin, but this has not proven successful.

Just wanted to share that when I told dad what you all had said in regards to the radiation side effects possibly not even peaking for several more weeks, he said that was the best news he had heard since Tuesday's good MRI! Silly me, I thought he might be bothered by it thinking that it was going to get worse, but rather, it gave him hope that he might actually feel better in the not too distant future!

So, thanks so much for sharing your thoughts - I am sooo glad I've found this board and others willing to share!

Bev

Bev - My dad was on Keppra for over a year before we convinced the doctors that it was causing his migraine-type headaches.  His headaches were so bad that he was taking Oxycodone and Hydrocodone both.  And between the headaches and the pain meds, he could hardly function.  After weeks of sharing with the neuro-oncologist our concerns, I think he just gave in to appease us, but after going off the Keppra, Dad had no more headaches at all, and yes, he did think clearer (though that could have been because he was not longer having to stay doped up to avoid pain).  I am so glad that we remained adamant with the doctor, because Dad did have several good weeks before complications took his life.  Don't be afraid to demand that they at least attempt to get him off the Keppra.  My dad did not have any seizures after going off of it, so it might be worth a try.  Best wishes to you, your family, and your sweet, sweet Dad.

Hello,

I've been on Keppra for 3 years now 750mg twice a day.  I didn't have surgery, radiation or chemo and thus had no side affects with Keppra.  There is now a generic for Keppra which is a lot cheaper!!  I think the fatigue may possibly be due to the radiation.  I hear that really wears the patient down, but they do recover.  I just thought i would give my input from someone diagnosed with a brain tumor, but I am only taking Keppra.  In fact, I will tell you it has positive side affects.  I was getting headaches all the time (before BT diagnosis) and now I never get a headache - it's kind of nice.

Good luck!!

DX oligodendroglioma grade 2 08/31/2006  no surgery, radation or chemo.

Hi Bev, I too was put on keppra to control siezures. The short story of it was I acted like a drunk, had trouble walking my feet felt like 200lbs a piece. My balance was so bad I fell into coffee table and and did major damage to my face. As the siezures became worse my neuro oncologist kept raising the dose to try and control them. She put me in the hospital to try and figure it out and the dx was "keppra". I go to a major cancer center and thank God they were able to find the cause after four days in the hospital. If anyone takes keppra and has these symptoms check it out with your doctor.

Stephanie

I have no symptoms from my brain cancer. My first surgery was in 8/08 and they put me on dilantin as a preventative so I wouldn't have a seizure after surgery. I had a 2nd surgery in July and they put me on keppra for 2 weeks as a preventative. I've never had a seizure, thank goodness. But the keppra turned me into a depressed, tired, zombie. I could barely get out of bed and I was crying etc. My brother called and I don't remember anything I said to him and had to ask my husband if he called or if I dreamed it. I finally figured out it was the keppra making me feel this way and had them change it to dilantin. I felt better, but it was still in my system. It got better each day but I was so glad to stop taking the meds. Those 2 weeks were the longest two weeks ever. I don't think dilantin works with temodar. I would talk to the doctor about the symptoms and see if you can change.