But whether that's good or bad isn't yet clear
by galluzzotiny on Wed Feb 29, 2012 07:58 PM
hi all my name is eida and my beautiful mom who is 67 has been battling this monster since july 2011 and i want to tell you that this is the worst thing for any loved one to see a person go through , to lose there dignity and life is beyond words, everyday we look at her me, my brother and dad and cannot believe this is happening to her body, so full of lidfe at one time and know totally debilated and not being able to care for herself and having to have everything done, this is no life for anyone . she has another mri due on march 6 and i am thinking why even bother if her neurological symptoms are so bad whats the sense. we do not have hospice yet, becaue i am a nurse and we have private help and really there is nothing else they can offer at this point and she is still awake and will understand what that means so we are waiting till she becomes more lethargic. but for everyone out there the fight for this disease is a monster and a beast to deal with. look at gary carter just passed away at 57 years old. my thoughts and prayers are with each and every family going through this and who have lost a loved one to this monster. god bless all and i will keep posting.
by Ducks-n-Row on Wed Feb 29, 2012 08:38 PM
The warmth, comfort, and love of your family being around your mother is surely felt by her. JUst as we are all unique so is the way this disease treats everyone. Please take comfort as your family and you love your mother.......We are a life line if ever needed. No one has to go through this alone......WE are here if needed.
Dx Nov 07
by distancerunner on Wed Feb 29, 2012 08:46 PM
I agree Elda...I am in a similar circumstance...WHY BOTHER with MRI's, taking more chemo? When the neurological problems in total are so profound that my wife dosen't know what city she's sitting in?
But, there is just no recourse other than to do your best for your loved one..It dosen't make alot a sense, but as long as a nero-onc tells you they would suggest further treatments, I for one anyway, just can't say no...though i should.
Once dementia sets in and they lose all interest in life as they had before, can't dress themselves or feed themselves....it's over.
But, I just agreed to further chemo and avastin and it is just ridiculous...
The key is, it IS worth it if a persons cognitive abilities still exist, IF NOT the ballgame is over.
I know it, but I just can't quit.
by brendaintexas on Wed Feb 29, 2012 09:26 PM
In my case it had to be the oncologist to say enough is enough no more avastin. He asked my mom where she was and she said the cardiologist (she had been going to this office for 2.5 years) and she didn't know what day it was. Those questions where the deciding factor for him. At the time I couldn't believe he wouldn't give her anymore treatment. I was so upset with tears running down my face. That was officially the hardest day of my life to know it was over. Later I was able to thank him so much for making that decision. Apparently I didn't know when to give up. I think the physicians need to step in because we love them and don't want to ever give up hope.
by distancerunner on Wed Feb 29, 2012 10:12 PM
Yeah, I agree with you 100% ...my wife got GBM when she was 50, she's 52 now and walks around like one of those characters in a zombie movie.
I couldn't take her to the great hospital we used to go to because going through the airports and the 4 days in the motel were 24 hour high alert which was just too exhausting...
Now, they want to do chemo and avastin again..It was up to me to stop it, to say, no..but I once again said I wanted aggressive therapy...I caught myself saying it!
If I thought her condition would bring a quicker demise, i'd stop it..but, I am afraid that she could be the lead in this horror film for a VERY long time and as such, I just cannot give up the fight....
Even though, I know I should..I too was very sad to leave a good team behind too..I think, I found another one, i'm not sure yet..BUT...YOu aren't goin through this alone..there are a few of us out here and it is downright....horrifying..
best of luck.
by carmentinar on Thu Mar 01, 2012 11:23 PM
our brain CAN heal. Please..if you or your loved one has GBM...please contact this lady.
My mother had glioblastoma and DID heal.
Not with chemo.
We did temdor for 2 1/2 years.
Her tumors not growing.
And I almost did NOT believe it.
The brain CAN heal.
You have to do the right thing.
by siblingof on Fri Mar 02, 2012 04:31 PM
by CarmensWife on Fri Mar 02, 2012 07:13 PM
by babzini on Tue Mar 06, 2012 01:48 AM
Elda, I know how you feel... at the risk of whining, it is just not fair. Words are useless because they cannot describe the pain and the range of emotions that go along with this monster.
My mother is experiencing the same thing. She can still walk and shower and that stuff but she cannot communicate properly and cannot be left alone because she forgets some basic things and can harm herself in a hurry. I can only sit and wonder will it just get worse and worse? Does she have any hope of improvement?
It is hard to give up... I am not sure I ever could but it is easy to question. Just know as Damon said we are here for you. God must have a special place for people who suffer from this disease and especially for those who care for them and keep up the fight.
Best wishes to you and your lovely mother.
by carmentinar on Wed Mar 14, 2012 08:55 PM
Please, anyone who is reading this who has been recently diagnosed with GBM.
Look at this article.
Then go here.
This is THE way to solve GBM (and a LOT of cancers).
and if you don't believe it. Then that is your path.
When you track a discussion, you will get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to track this discussion?
If you stop tracking this discussion, you will no longer get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to stop tracking this discussion?
We care about your feedback. Let us know how we can improve your CancerCompass experience.