CancerCompass message board discussion started by Debralynn on 4/29/2008 http://www.cancercompass.com/message-board/message/all,23543,0.htm Mon, 01 Dec 2008 00:00:00 GMT Mon, 01 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Good morning...My husband had surgery 3/10/08 and is starting radiation and temodar this week.  The initial diagnosis was grade II, then was changed to a AAIII, so we are late getting started on treatments.  He is still having headaches and I wondered if that is normal?  He has never gotten rid of them. His post-op MRI showed some swelling still from surgery and some fluid and blood accumulation, but Duke was pleased with how everything looked.(over 90% of tumor removed from left temporal lobe)  He has a slight headache all the time and then at other times he will have a sharp pain that only lasts for afew seconds.  This is similar to what he did prior to surgery.  Has anyone else experienced this as well?  They are not bad enough for him to take anything for them, just a nuisance.  I pray daily for all of you all..praying for miracle after miracle in our lives.DebralynnHusband Dx 6-07, Surgery 3-10-08, AAIII, starting radiation and temodar this week  Debralynn Tue, 29 Apr 2008 00:00:00 GMT I think I've had a headache since I was 5.  :)   It just became the "norm" and that's just how it goes with me.  I don't take anything unless it's hugely bad, but really it's just a nuisance. Keep the Faith! Sunflower13 Tue, 29 Apr 2008 00:00:00 GMT Hi Debralynn,It sounds like your husband needs an increase in his steroid (decadron). That fluid that's accumulating is the cause for his headaches. it's creating pressure on the brain.-- if the swelling gets to serious or persists-- headaches will get stronger and vomitting may start as well.I saw this with my Dad's tumor. Jennifer  bijou10 Tue, 29 Apr 2008 00:00:00 GMT  On 4/29/2008 Debralynn wrote:Good morning...My husband had surgery 3/10/08 and is starting radiation and temodar this week.  The initial diagnosis was grade II, then was changed to a AAIII, so we are late getting started on treatments.  He is still having headaches and I wondered if that is normal?  He has never gotten rid of them. His post-op MRI showed some swelling still from surgery and some fluid and blood accumulation, but Duke was pleased with how everything looked.(over 90% of tumor removed from left temporal lobe)  He has a slight headache all the time and then at other times he will have a sharp pain that only lasts for afew seconds.  This is similar to what he did prior to surgery.  Has anyone else experienced this as well?  They are not bad enough for him to take anything for them, just a nuisance.  I pray daily for all of you all..praying for miracle after miracle in our lives.DebralynnHusband Dx 6-07, Surgery 3-10-08, AAIII, starting radiation and temodar this week  When my husband has headaches it has been contributed to increased swelling. During rad. & chemo he was increased to 4 decadron a day because the radiation will cause increased swelling. He has finished the rad. on April 2 and the decadron has been decreased to 3 one day and 2 the next. He has his next MRI next Monday and begins the 5/23 temodar. He was dx Dec. 29, 07 with GBM4 in the left occipital lobe. Surgery on 1/9/08 - 90% removed but this caused him to have right sided perpherial blindness. Good luck with the treatment. Our prayers are will you.Colleen CSM51 Tue, 29 Apr 2008 00:00:00 GMT Headaches are common.  Often the decadron needs to be increased other times sodium levels can be off which can also cause headaches.  My mom who has the highest pain tolerence of anyone I know, will get them so bad she cries.  Hers come on sudden and often only last a few minutes but they are a terrible few minutes.  Her sodium levels were too low and the doctors feel this was the cause because she does not appear to be having any edema. Gina03 Tue, 29 Apr 2008 00:00:00 GMT My wife (also AAIII dx at age 32) gets headaches every so often, and lately as a side effect from the Temodar. Good luck with starting the treatments. Your in good hands at Duke. I'll be thinking of you and your husband as he begins treatments. Brandon-cg Tue, 29 Apr 2008 00:00:00 GMT  On 4/29/2008 Debralynn wrote:Good morning...My husband had surgery 3/10/08 and is starting radiation and temodar this week.  The initial diagnosis was grade II, then was changed to a AAIII, so we are late getting started on treatments.  He is still having headaches and I wondered if that is normal?  He has never gotten rid of them. His post-op MRI showed some swelling still from surgery and some fluid and blood accumulation, but Duke was pleased with how everything looked.(over 90% of tumor removed from left temporal lobe)  He has a slight headache all the time and then at other times he will have a sharp pain that only lasts for afew seconds.  This is similar to what he did prior to surgery.  Has anyone else experienced this as well?  They are not bad enough for him to take anything for them, just a nuisance.  I pray daily for all of you all..praying for miracle after miracle in our lives.DebralynnHusband Dx 6-07, Surgery 3-10-08, AAIII, starting radiation and temodar this week I was just having the headache converstion with my mother earlier.  She was diagnosed 12/07 with AAIII surgery 1/08 completed temodar and radiation and is now on the 1/23 cycles of temodar.  She has always had headaches her whole life.  She continues to have headaches and we told her doctor who said there it not a reason for the headaches.  The MRI was great.  He gave her lyrica and said she could take motrin.  All she wants to do is take excedrin but that is a no-no.  So my point is............my mom continues to have headaches as well.  faith11 Tue, 29 Apr 2008 00:00:00 GMT Hi Debralynn.  I agree with the others who said your husband might need an increase in the Decadron.  When my husband was undergoing his 34 radiation treatments (and taking 160 mg. daily of Temodar), they were trying to decrease his Decadron.  Bad move.  He began having daily headaches and a few really bad ones where I had to give him Oxycodone.  At the completion of the radiation, I told the radiation oncologist about the headaches and other issues he was having.  The post MRI showed tumor progression and a huge amount of edema.  So they raised his Decadron immediately back up to 11 mg. a day.   So, if he is off the dex or tapered down on it, please talk to the doctors about upping the dose - it should help greatly.Best wishes,BarbHusband dx 4/07, inoperable GBM IV.  Radiation and Temodar did not work.  Started Avastin / CPT-11 7/07 with excellent results. bpanc Tue, 29 Apr 2008 00:00:00 GMT My mom often commented on sharp pains in her head that lasted only moments to minutes during chemo and radiation. Since finishing her treatments she has had to take a pain killer twice to help ease a couple of severe headaches that regular tylenol wouldn't touch. Other than that she doesn't mention any headaches.It's kind of ironic, when this all happened the dr's kept asking me about my mom showing any signs, like headaches, blurred vision, moodiness and I kept saying no. She's had migraines all her life, if she was having increased headaches it wouldn't have triggered a thought to her or even her family that something was wrong. Now when she says she doesn't feel well I immediately ask "does your head hurt"? Everything revolves around the "headaches"....argh.  Hang in there! -h- spagirl9191 Wed, 30 Apr 2008 00:00:00 GMT