CancerCompass message board discussion started by sandram on 7/6/2008 http://www.cancercompass.com/message-board/message/all,25778,0.htm Sun, 23 Nov 2008 00:00:00 GMT Sun, 23 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Dx 11/07 Surgery 12/07My husband had his first seizure yesterday, there saying that the ct scan showed a growth from 2cm to 5cm in 3 months, started on decadron 4 mg 4/dayCurrently on temdar 5/ 23 cycleIs this normal? He's really been confused a lot but the decadron seems to help.     sandram Sun, 06 Jul 2008 00:00:00 GMT The growth on Temodar, doesn't sound right- it happens, but it usually means that the chemo needs to be changed. Do you have an appointment set up to discuss changing chemo? The Decadron will help decrease the swelling, which will help in the short-term, but the fact that the tumor has changed so much needs to be addressed. I'll keep you in my thoughts... Jan42006 Sun, 06 Jul 2008 00:00:00 GMT Have they mentioned AVastin?? Some people do not respond to the Temodar. There is a gene they can check for. If the gene is active, people do not respond. If this is his first seizure, they will probably add anti-seizure meds. Good luck to you. My husband finished radiation on Tuesday and his Temodar tonight. We get results in August. maryws Sun, 06 Jul 2008 00:00:00 GMT HI: The seizures can be caused by the swelling of the healthy brain tussue that's being pressured by the tumor. Steriods should help immediatlely to aleveate this while you plan your next attack. My wife's tumor returned to it;s original size within 3 weeks of stopping the daily radiation and temodar after her first surgery. They did a second surgery to remove the new growth. Is you husband on Keppra or other anti-seizure med? Hope all goes well...We've been at this 13 months and I know it;s not easy. C VA Husband Sun, 06 Jul 2008 00:00:00 GMT I agree that you need to talk to the docs about a treatment change & do so quickly.  My husband had the gene deletions that indicated that temodar should work, but he had tumor changes & it con't to grow anyhow through chemo.  The original onc. wanted to continue treating him with temodar and did not want to switch to avastin/cpt-11.  Eventually he had to have surgery again & we had to change doctors.  The delay caused by the first onc's reluctance to change treatment created more deficits for him and allowed his health to deteriorate.Jackiekay jackiekay Sun, 06 Jul 2008 00:00:00 GMT We have an appointment with the Doctor next week, but he's in Japan right now, we're seeking an appt at Duke.....for a 2nd... I'm really scared right now and really don't know what to do..... sandram Sun, 06 Jul 2008 00:00:00 GMT We've not seen the Oncologist in months, I've read about other meds and I'm looking into these. It seems to be so hard.  I've been telling people for weeks that the confusion is really bad, but for the first time they're seeing it and now I'm not feeling like the crazy wife!It's strange that nobody really listens! I feel that we all need someone who'll take us seriously!We're the couple who never complains and never ask for help but when I do express that something is wrong no one listens... Until they see or have experience it.... Does anyone else have this problem???  sandram Sun, 06 Jul 2008 00:00:00 GMT Hi C,Yes Keppra is what he's on now.What's,I'm thinking over and over and I'm doing  everything  I can for him, is this normal, what else can I do??? What can I do to defeat this beast that has taken over our life.Just PRAY PRAY PRAY sandram Sun, 06 Jul 2008 00:00:00 GMT Where are you being treated?  They should have an oncologist that is covering for your doc while he is away. It shouldn't be your job to find other protocols....although I admit I searched the web a lot initially.                 Who do you usually see when you go for an appointment?Just want you to know that you are being heard and you aren't some crazy wife- you know your husband and never forget it! Jan42006 Mon, 07 Jul 2008 00:00:00 GMT  On 7/6/2008 sandram wrote:Dx 11/07 Surgery 12/07My husband had his first seizure yesterday, there saying that the ct scan showed a growth from 2cm to 5cm in 3 months, started on decadron 4 mg 4/dayCurrently on temdar 5/ 23 cycleIs this normal? He's really been confused a lot but the decadron seems to help.    My husband was diagnosed on the 21st Dec'07 he had surgery on the 27th Dec & only 10% of the tumor at the max was removed.  On the 14th Feb'08 he had intracranial pressure, he was admitted to hospital and was given double dosage of decadron iv.  The decadron helped decrease the pressure and he then had 32 fractions of radiotherapy, this dramatically improved his memory and speech.  Towards the last week of radiation & as a result of the high dosage of steroids this led to  muscle wastage..he was now completely bedridden. he had sever pain in his legs.  The improvement from radiation only lasted for about a month thereafter my husband's health started to deteriorate, he was confused and started getting seizures, the seizures started to increase to almost everyday...he eventually developed a very mucousy breathing and unfortunately passed away within a few days on the 21st June. As a wife I did everything I could possibly do but this monster of a disease won the battle.  Do not give, keep on praying & do everything you can to make your husband comfortable. The seizures is caused from the intracranial pressure, maybe increasing the decadron will help. Check it out with your doctor.  I know exactly how you are feeling & heart goes out to you. You are in my thoughts! Be strong and fight this monster.  RubyG Tue, 08 Jul 2008 00:00:00 GMT