What next?

My mother is in temodar now starting yestderday (Tue) for 28 days. Tuesday night she had a brief seizure and we went hospital.  They did cat, and some check up and sent us back home.  They did not tell us anything.  We will speak with her Drs in the morning.  But is this the time? I am hoping not.  It has been only 2 months after surgery and radiation. This DEVIL is working so fast.  What I am suppose to do when more  seizure will happen?  

Nina77,

Take a deep breath....I would think that your mother is on anti-seizure meds? They might need to be increased or changed to a different medication to control her seizures. I am taking 1000mg twice daily to control my seizures. I know all this is over whelming and we would all love to get off this "roller coaster". If you see your Mom having more seizures call 911 and notify her N.O. on this but.....be pro active and call her N.O. to get her seizures under control asap. Dont wait until you see another one.

HOPE

Damon

Dx Nov 07........No regrets

A seizure is not the end. They should have told you what the CT scan said-- it may have taken them a while to read it, but it's probably been read by now. You can go back and ask for the report or ask for someone to explain the report to you. If your mom's not on Keppra already, the docs will probably put her on it or increase the dose. Ask about taking an extra dose if she feels a seizure coming on.

Thanks for quick and informative response.  Yes we called 911 and went with them to hospital.  Today, her neuro surgen looked at her Cat and there is nothing to worry. But we have not heard from her chemo oncoligist regarding side effect of temodar. Seizure might be because of Temodar which happens rarely .  Hope for many days for all to have stable and calm days. 

Hi Nina: Your mother's story sounds similar to my mother's story. We are in Canada as well. My mom was diagnosed with a GBM in January 2011. She was 75. After a successful surgery where they removed over 95% of the tumor, they offered her 2 choices. Either she could have the short course of radiation(15 treatments) alone or join a study for the elderly. The study was a randomized study that compared short course of radiation alone with short course of radiation along with Temodar. My mother was randomized to the arm that involved short course radiation with Temodar. She tolerated Temodal very well. About a month after radiation, my mother started having seizures. At the time, they said the seizures were not necessarily due to disease progression. They did a neurological exam and all was fine. At the time, an MRI was not useful since it would have been too soon after radiation. They put my Mom on anti-seizure medication. This controlled my Mom's seizures. To make a long story short, after enough time had passed, my Mom did have an MRI and we were able to confirm her seizures were not caused by disease progression. Eventually we did end up going to a private Oncologist like you did. That is a whole different story though. I know exactly what you are going through. I went through it all as well. Just hang in there. I am a little surprised that your Mother was not offered the same study my Mother went on. Where abouts are you in Canada? Hang in there. PSM

On May 03, 2012 6:08 AM sniffle wrote:

Hi Nina: Your mother's story sounds similar to my mother's story. We are in Canada as well. My mom was diagnosed with a GBM in January 2011. She was 75. After a successful surgery where they removed over 95% of the tumor, they offered her 2 choices. Either she could have the short course of radiation(15 treatments) alone or join a study for the elderly. The study was a randomized study that compared short course of radiation alone with short course of radiation along with Temodar. My mother was randomized to the arm that involved short course radiation with Temodar. She tolerated Temodal very well. About a month after radiation, my mother started having seizures. At the time, they said the seizures were not necessarily due to disease progression. They did a neurological exam and all was fine. At the time, an MRI was not useful since it would have been too soon after radiation. They put my Mom on anti-seizure medication. This controlled my Mom's seizures. To make a long story short, after enough time had passed, my Mom did have an MRI and we were able to confirm her seizures were not caused by disease progression. Eventually we did end up going to a private Oncologist like you did. That is a whole different story though. I know exactly what you are going through. I went through it all as well. Just hang in there. I am a little surprised that your Mother was not offered the same study my Mother went on. Where abouts are you in Canada? Hang in there. PSM

We are in BC.  BCCA was very reluctant to prescribe Temodar but her private oncologist prescribed Temodar.    My mother is on anti -seizure already when she had her seizure on Tuesday.  We are going to see her neurosurgeon and I guess he is the one who would adjust her anti seizure.  Further, I realized we need to ask for many things ourselves and look up what is good for my mom.  BCCA oncologists follow the standard procedure.  Yes, I am frustrated with this system above 70 years old patient does not have any other choice than just to try to make the best out of few months without treatment.  We are considering to take her off from temodar for few days.  She is very weak now, and has lost appetite. 

How is your mother doing?  How is her strength? Thank you for your informative message. 

Ah, the BCCA! Yes, they aren't enthusiastic about doing anything beyond the short course of radiation for anybody over 70 for GBM. As for your Mom's anti-seizure medication, is she on dilantin(phenytoin)? That was what they started my Mom on. If so, it can take awhile to get the dosage right. By the way, it can also cause fatigue. In my Mom's case, they started her on dilantin after her first seizure. They had to keep upping her dosage as every time they checked the phenytoin levels in her blood, the levels were too low. By the way, she did have a second seizure early on while on dilantin. Eventually they changed her anti-seizure medication to Keppra. Keppra worked out well for my mother. No need to check blood levels, and there are fewer side-effects. My Mom never had another seizure. As for my Mother, unfortunately she died 2 weeks ago. She fought hard and survived for 15 months. There were many ups and downs for my Mom. One of the hardest periods started about 6 weeks after she completed her radiation treatments. She was just so tired. This lasted about 4 or 5 weeks. She had a fair amount of brain swelling during this time. Dexamethasone helped. She did recover from this and was in pretty good shape for a while. One thing you might consider is getting another opinion from somebody in Toronto, Montreal, or the US. There would probably be a cost associated with this. Hang in there. PSM

Hello Nina77,

It sounds like your mom and my father are experiencing very similar symptoms.  My father is 75 and was diagnosed in November 2011 with GBM and had his resection on Nov 10th.  He did the 6 weeks Radiation/Temodar and is now headed into his 4th month of maintenance chemo/Temodar.   He had a mild Partial-complex seizure on March 24th, which my mom throught was a stroke initially.  They have done a resting EEG which was abnormal and showed a prevalence for seizure activity in the right frontal lobe (where his tumor/resection was).  They have now increased his Keppra by 250 mg so he takes 750mg/twice a day. I wanted to share that there is also a lot of research currently showing that the Keppra (anti-seizure meds) works with the Temodar well, allowing the Temodar to do it's job more effectively.   We have also started him on Ritalin 10mg/day for 14 days to see if that helps his cognitive issues (focus/short-term memory).  Ritalin is one of two drugs that is being used to help Brain Tumor patients with their cognitive/focus issues. 

I found a wonderful foundation that has been very helpful to our family during my dad's diagnosis/treatment, etc... The Elliott Foundation/EndBrainCancer .  They have been so helpful that I joined them on their Board of Directors, as they are located in my hometown.  I am now their Concierge Health Information Specialist as well.  I work with people all over the world (India/Malta/England and the U.S. currently) helping them get to Advanced Brain Tumor Centers and ensure that they get the full genomic study done on their brain tumors, if they are operable.  We provide support to patients and their families by sending information packets, getting referrals, contacting Adv. Brain Tumor Centers, neuro-oncologists and neurosurgeons for them.  We have taken over ALL patient support services for the NBTS (National Brain Tumor Society) in the U.S, as they dropped these services last fall.  We have an 800#, website and Facebook page which I would encourage you to look at, call, etc...  We are here to help and walk with you on this journey.  I know how difficult this is to watch our parents go through this.  I am losing my dad a little at a time and it's heart-wrenching.   

Please let me know if you need anything.  I am happy to help in any way I can.  Have you had a 2nd opinion in Canada?  We took my father to The Ivy Center at Swedish Neurosciences Institute in Seattle, WA.  His surgeon was Dr. Greg Foltz.  We are seeking out 2nd opinions currently from Neuro-oncologists in regards to my father's current treatment protocol.  He had another clear MRI this past Monday. 

Thank you and all the best to you and your mother.  

Maria Barrett

Concierge Health Information Specialist                          The Elliott Foundation/Chris Eliott Fund              www.endbraincancer.com  www.facebook.com/endbraincancer                @endbraincancer on Twitter                                          phone #1-800-574-5703

Thank you all for ur informative, supportive response when we needed them.  Her Neurosurgen said he could not see anything in CAT but her dilinten is a little low and he increased it.  She has her first MRI this Mon and we will take it from there.  Hope