gbm 4th yr no steroids

On Nov 03, 2009 5:00 PM utladyd3 wrote:

If you don't mind me asking, what stage of gbm do you have?  As I have gbm Stage IV which is terminal  and the only way of survival is radiation, steroids, chemo and trial meds.

Thanks for a response.'

God Bless You to continuing to do do very well!!!!

hello thanks for your reply,there is only one stage of gbm and that is a grade 4,all lower gradings are not gbm but gliomas of various levels. mine is a grade 4 gbm. yes this type of tumour is dangerous but we all respond in different ways to medication etc .no its not certain that people are going to die just because they have gbm. lots of people have it for many many yrs.i know of a number that were diagnosed between 5-10 yrs ago and more. it would be interesting for you to seek further advice i think. whilst ive had radiation and temodal,ive had no trial meds and no steroids. as for terminal,well thats not strictly true. we are all terminal ,the whole population of the planet, but that dosnt mean gbm is going to pull us under. there are certain things that are out of our hands but if we just stick to the advice of our docs and medical teams,and not listen to the advice given by people with books on life expected averages with gbm we would all feel a whole lot better. just dont think of yourself as an average your not. best wishes john.

Another great story!  Your health is our hope!  Stop by our Caring Bridge site and say hi...your news will really boost my hubby! Prayers and love,janni

http://www.caringbridge.org/visit/stevecalloway

Hello John, Congrats on your continued success with keeping the monster at bey. I've responded to your posts before. My mother was diagnosed about the same time as you, Oct 06, and also had tumor in right temporal lobe. Also doing very well and elected to end treatments after only 4 months of Temodar... just didn't like taking it and willing to accept the outcome. For a while it was like waiting for the sky to fall and it still hasn't. In fact she feels better than she did on treatments. Makes me wonder if the right temporal lobe tumors are less aggressive or have less impact. Also, quickly off of steroids following surgery/treatment. For well over two years she's only taken one Tylenol as needed for what must be a minimal amount of discomfort. Wishing you the best, John. I'll check back in with you in another 6 months or so!  Louise

On Nov 05, 2009 7:47 AM Louzda wrote:

Hello John, Congrats on your continued success with keeping the monster at bey. I've responded to your posts before. My mother was diagnosed about the same time as you, Oct 06, and also had tumor in right temporal lobe. Also doing very well and elected to end treatments after only 4 months of Temodar... just didn't like taking it and willing to accept the outcome. For a while it was like waiting for the sky to fall and it still hasn't. In fact she feels better than she did on treatments. Makes me wonder if the right temporal lobe tumors are less aggressive or have less impact. Also, quickly off of steroids following surgery/treatment. For well over two years she's only taken one Tylenol as needed for what must be a minimal amount of discomfort. Wishing you the best, John. I'll check back in with you in another 6 months or so!  Louise

oh thanks louise,thats great news.  yes it does make me wonder if the right temporal lobe is less of a problem if you get any more information on that please keep me informed and i will you,if i find anything. may be someone on this site would know? speak soon john...