CancerCompass message board discussion started by Jim C on 6/25/2008 http://www.cancercompass.com/message-board/message/all,25402,0.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/ As a caregiver, I can use some perspective on fatigue. I know fatigue is one of the biggest challenges a cancer patient faces.My mom, age 78, dx 01/04/08 with GBM IV, right frontal lobe. Complete resection. She had the standard 6-week radiation treatment and came through that well in the short term. She was weaned from Decadron before her radiation program began. About 2-3 weeks after she completed the radiation program, she developed balance problems and an severe headaches. An MRI revealed swelling and possible necrosis in the area where the tumor had been. She went back on Decadron and quickly showed improvement. Balance returned and headaches disappeared.She has once again been completely weaned from Decadron, but shortly after her second Temodar cycle, she developed pulmonary embolisms that landed her in the hospital for a week. She is now more or less out of the woods with the blood clots, but two weeks later, is still extremely fatigued. The week in the hospital also caused her to become much weaker and now her energy is low and she now walks with a walker or cane. Her last MRI (06/20/08) showed no sign of tumor re-growth, which is great. But she wants to sleep all the time and has very little interest in doing things such as working on the computer, something she enjoyed doing after her surgery. She's due to start another Temodar cycle this weekend, but we're wondering if she can stand it. I suspect the steroid -- or lack of -- is playing a role in this. I also know my mom's age does not work in her favor. Any other thoughts? Thanks!Jim C Jim C Wed, 25 Jun 2008 00:00:00 GMT Hi Jim.  I am absolutely convinced that Decadron has kept my husband as well as he is.   He is almost 15 months out since diagnosis of a stage IV inoperable GBM - left temporal / left parietal lobe.  They tried tapering his Decadron during radiation and that proved to be a disaster.  Extreme headaches, daily headaches and extreme fatigue.  Back up to 11 mg. a day and things improved significantly.  Unfortunately, the radiation and concurrent Temodar did nothing for him and he was immediately put on Avastin / CPT-11.  He started this regimen on July 25, 2007 and had his last scheduled infusion on June 11, 2008.  He never missed an infusion.  We got him tapered down on the Decadron (to about 2.5 mg. a day) and then the doctors added 30 mg. per day of hydrocortisone.  He has further tapered down to his current level of 1.50 mg. daily and still takes the 30 mg. of hydrocortisone.  He has an MRI scheduled for July 7, a PET scan scheduled for July 8 and an appt. in the Brain Tumor Clinic for July 9.  At that time, they will tell us what the PET scan shows and what they recommend we do next.  He has never been able to get off the Decadron completely.  They may try again to removed the Decadron, if things look good on the scans.  We'll see.  He is being treated at Duke and the neuro-oncologists really listen to you.  I told them that I was convinced that the Decadron and hydrocortisone were keeping my husband tolerating the treatments so well, feeling decent, able to still do things and they said to keep him on them.  "Why rock the boat?" is how they phrased it.   I agree.   I know that some doctors and some patients and caregivers hate Decadron and in some cases, patients show really serious side effects from it, but for my husband it has been a real god send.  I seriously don't know where we would be without it.  Yes, my husband's legs and arms are really skinny and wrinkly but his quality of life is darn good.  With all that said, you are correct when you say that your Mother's age is against her.  Unfortunately, that does play a role.  My husband is 66 - so no spring chicken either.  :-)  The key is that your mom be treated by a neuro-oncologist - preferrably at a major brain tumor center.  The fact that she had a total resection is definitely in her favor.  Good luck to you and your Mom.Barb bpanc Wed, 25 Jun 2008 00:00:00 GMT Just thought i would jump in this message.i also,have backed off the decatron,but had to increase to ywo pills sa day,rather then four.[16mg] i have trouble sleeping,up all hours,playing texas holdem,which i enjuoy.    I will be starting round three of cycles,but reaay wainting for tis one to be over,get an mri,and see where i'm at.  Still no real side effects,happy with that.i do agree,steroids are a must,my question along those lines,how long can you stay on them??I also, am 76years old,strong,and ornery.seems the steroids bring that out on me.  woztoo Thu, 26 Jun 2008 00:00:00 GMT Three years ago, at the tender age of 41, I had a cranio for a meningioma.  I was recovering nicely and getting back in the swing of things when pulmonary emboli hit two weeks later.  The PE's were much worse than the cranio and really knocked me for a loop.  What your mom is experiencing is quite normal post-PE.  I was in cardiac intensive care for 4 days and two days in a regular room.  When I came home from the hospital I could hardly walk at first.  You may want to request an oxygen monitor overnight to check her oxygen levels.  I believe most of us operate around 99-100%.  When I was first home from the hospital, my ox was dropping down into the 70's while I was sleeping.  Once I got at-home oxygen, I felt much better.  I used it almost all the time at first & then just at night.  I slept much more soundly and restfully with the oxygen.  After about 6 weeks I stopped using it altogether. Best wishes,Jackiekay jackiekay Thu, 26 Jun 2008 00:00:00 GMT My husband has been on Avastin for 13 months. We just returned from Duke on Weds. MRI was stable and has been the last six months. They have suggested that he been taken off the Avastin in Sept and do PET scan. What do they tell you will happen to the tumor if he does not stay on the Avastin and what will a PET scan tell them that MRI does not. Benton has been doing really well until the last month. He doesn't want to do anything he is sleeping most all day. He does not want to eat much. I don't understand what is happening. I am so scared. Thanks, Diane Dx 9-06, inoperable elizabeth5 Sat, 05 Jul 2008 00:00:00 GMT