One patient with glioblastoma still alive nine years later
by aunismom on Sun Oct 24, 2010 10:43 PM
My mom was diagnosised Sept 18, 2010 stage 4 GBM. She had surgery on Sept21. Has not started radiation or chemo that is scheduled for this Tuesday. She went home last week and last night is back in the ER with brain swelling edmea. Is this a sign that the tumor is already coming back?
by I_love_Gary on Sun Oct 24, 2010 11:00 PM
I'm not saying that it cannot be the tumour, but it is much more likely that it is swelling in the brain, and if she is not on any steroid, it would not be surprising. If she had the steroid for the surgical period, and if the doc has since told her to reduce, or go off the steroid, then there is a good chance that she will need to go back on it. Of course it CAN be the tumour, it is an evil devil, grows super fast, but give the doc a heads up, ask about increasing the steroid, and see if that makes any improvement. Your so new to all this. Sorry you find yourself here, but your welcome to ask any questions you have, or tell us how you are getting along. No judgements here!! We're all in the same boat, paddling as fast as we can.
Hoping your mom does ok.................DL
by aunismom on Mon Oct 25, 2010 01:34 AM
All I want to do is curse at this disease. I am so mad and so sad all at the same time. I am pissed that my mom most likely is not going to see my 5 year old grow up. I am pissed that I am losing what I thought would be another 20 years with my mom. I am scared for my dad who has never had to take care of himself. I am not giving up, but I also understand that the reality is GBM is the worst type of brain cancer you can have.
by rcassick on Mon Oct 25, 2010 04:09 AM
Yes, GBM is not great, it sucks, but there are those that continue on with it. I can't say either way, but things are getting better and some of us are seeing longer life spans due to better treatments. No promises, but don't give up just yet.
Curse the disease all you want. Please. I do it every day too... maybe the darn thing will take the hint and go away :)
by grantsnanny on Mon Oct 25, 2010 12:33 PM
So sorry that you have been forced to join our family of "GBMers". Is your Mom on any steroid therapy? As for the swelling, I don't know, other than my husband ( who is now 69 years old and 20 months from diagnosis) had the same and our NS told us that the brain trauma suffered with the surgery was the cause. I don't know if this is your Mom's situation, but he described it as much the same as with most surgeries the swelling comes after the brain has been touched and operated on and so forth. I pray this is what your Mom is experiencing.
My advice? NEVER, NEVER give up. We were told 6-9 months and here we are 20 months. We hate this and we look for a cure. It hasn't come yet, but it doesn't mean that someone, somewhere is working very had to find it.
by aeverydayangel on Mon Oct 25, 2010 01:27 PM
We are going thru the same thing at the same time. Let us fight this battle together. First and for most I'm glad you found this sight as it has helped me deal with this disease..not knowing anything about it and only hearing What doctors have to say about it...Scary when you hear from them but you have to realize they go by data and does not have the ability to put time lines on anyone. You and I both know that the decision is made from God and God only. Thier are survivors on this sight. What I can say to you right now is Dont waste your time and energy on being mad...it will make you sick and you need to be there for your loved ones. Enjoy every moment you have with your mother right now...It is the beggining and you are scared..time will heal as you read stories on here about Survivors of this disease..it will give you Hope and thats what you need right now. Continue to keep the Faith and Pray. How old is your Mom? I cant really answer your question about "is this a sign the tumor is coming back" because every tumor is different at growing rates but my better half has had Decadron to keep the swelling down and if she was not on that medication I pray that it was the only problem of her brain swelling. Stay Blessed and Strong for her. Please keep me informed as I will do the same for you my friend-aeverydayangel
by rcassick on Mon Oct 25, 2010 01:44 PM
Missing a few 'nevers' there :)
But it is very sound advice anyway.
I would really love to know how accurate any DR has been when they throw out those early predictions upon diagnosis like that. I hear that quite often and wonder if they have ever been even close.
OR, perhaps if they have been close, if it was not hearing those words that caused the patient to just settle into the wrong mindset and let it happen. I think mental state can be so important (both from the standpoint of the patient and the caregivers) that even trying to predict a timeline in cases like this can cause issues.
My DRs never gave me a 'timeline'. I am not sure if they ever had a 'side talk' with the wife though.. maybe she can answer that one :)
I asked them and they did not hide the fact that there was no sure and that I could expect to not be around shorter that I had probably expected in life (who ever really lives as long as they wanted to anyway right?), but they were very reticent to push a timeline on me. I have to admit that I found that refreshing. Once again all the smart folks in the room were willing to admit that even they were in the dark on some things, not just ME.
There is a fine line between being 'realistic' and 'settling' I think. yeah, at some time everyone involved needs to be honest and admit that the end may be near, but I think we have even all seen cases here where it looked dark and the person ended up pulling it up and coming back.
I know one thing... I am not giving up... Who's with me?!?
by AHiker on Mon Oct 25, 2010 02:11 PM
I've drawn a line in the sand that calls for having an additional THIRTY years of quality life (which does not include the 1.5 years that I've had since starting my glioblastoma Grade 4 fight). I'm with you and will not give up. From what I have seen, staying positive does help. NO ONE HAS STAMPED ANY EXPIRATION DATE ON OUR FOREHEADS!
by brianh777 on Tue Oct 26, 2010 03:44 PM
All the posts on this thread are great (rcassick - i'm with ya!). I love the positive attitudes. My wife is going through exactly the same thing right now (same timeline). She had some pretty bad swelling going on after the 2nd surgery (1 tumor removed, one debulked and inoperable). The pressure was terrible - causing pain, dimensia, confusion. They finally put in a shunt to drain the fluid from the brain to the stomach and that helped out immensely. She is going tomorrow to get a radiation mask fitted and tattoos for radiation. Keep us informed whats going on - this is the best site ever to know you are not alone in the fight!
by Don1500 on Tue Oct 26, 2010 06:52 PM
My wife had a few episodes of edema from the swelling caused by GBM. And when she had her resection I thought there would be room now and the swelling wouldn't be such a problem, it was after all an orange size tumor they removed. But it hasn't been so. I have found out that the swelling concerns every cell in the brain, or at least those traumatized by the GBM. This means that the edema will be a factor no matter how much room is available. And if the edema affects any cognizant section of the brain you will have an incident. For that reason, until you are completely GBM free for a few months you should stay on Dex, or at least my wife does. Right now she is on 2mg a day and even with that low dose the side effects are severe.
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