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by phyllischarles - April 22 at 5:00 PM
The NO decided to start trying to decrease my husbands decadron he was taking 16 mg a day. now taking 14. But he has been having bad headaches since. we see our NO again on the 29th. Has anyone else experiecned increase in headaches when trying to back off decadron?
by phyllischarles - April 07 at 1:21 AM
Counting time is the worse!!! Everytime I realize that they gave him 1 year to 18 months...I always count from the month I'm currently on and say to myself "one year" from now...but in actually "IF" the doctors are right October is only 6 months away...I still try to believe he will probably outlive me, if he continues to take his meds. I get so angry when he misses his doses! Not because he forgot but because he is out doing too much and loses track of time. Then he doesn't feel good the rest of the day. Grrrrrrrr.
I have made no plans and don't know what I am going to do. I only know that I will not/cannot stay in this house if the Lord sees fit to take him from me.
Seems like making plans and arrangements is like admitting defeat and I can't bring myself to do it. Everyone thinks that I am holding it together but I am not. I just keep it together enough to go to work everyday with enough pills in my system an elephant would sleep for a week! I will be a wreck if I am around when the end comes.
We just had our honeymoon in Hawaii two weeks ago. At least I'll have that memory. We took our last bit of money to do it :)! We don't care we went to the Luau, on a submarine, volcano trip, down in the shark cage!! He swam with wild dolphins (ended up getting water in his lungs though; the phnemonia arrived about the time we got home. And watched the Hawaiian Sunset...So far he still remembers....
by phyllischarles - April 03 at 4:23 AM
University of Michigan Have tow of the TOP NO in the Country. We switched to them a few months ago and have had a lot of success.
by phyllischarles - March 22 at 5:49 AM
My husband takes Zofran and pepto bismal tablets. The pepcid and prilosec made him HAVE heartburn terribly. He takes these one hour before the temodar and has had no more nausea or stomach pain,
by phyllischarles - February 19 at 12:44 AM
OH HOW TRUE, HOW TRUE..WE SPENT THE FIRST SEVEN WEEKS WITH THE BEAUMONT TEAM. ONE THING AFTER THE OTHER. AFTER SWITCHING TO UNIVERSITY OF MICHIGAN AND THE NO THERE ADJUSTING HIS MEDS; HE IS DOING MUCH BETTER. WISH WE WOULD HAVE STARTED OFF THERE. GOOD LUCK TO YOU
by phyllischarles - February 19 at 12:27 AM
What is CCNU?
by phyllischarles - January 15 at 10:42 PM
we were diagnosed in October and my husband is 50 any questions i can answer no matter how silly they may seem ask away! i was so blessed to have found this site!
by phyllischarles - January 15 at 10:34 PM
thank you for this information! my husband has just had his first seizure and aftre being in the hospital all week they sent us home with him still seizing a little but with meds of Keppra and dilantin. You told us something the doctors didn't and that is from one seizure to the other he can have another seizure! i'm thinking these meds will keep them under control and you are saying that they may not? Geesch.
by phyllischarles - January 15 at 10:11 PM
my husband just started taking double the amount of decadron but they didnt double the amount of pepcid that he takes. Will call on this tomorrow. But in the mean time what is anyone out there taking for pain? Vicodin makes him too whoozie. Any suggestions on what may work for pain?
Thanking you in advance
by phyllischarles - January 13 at 6:33 PM
THANK YOU SO MUCH WE ARE SEEING THE NEURO TEAM AT THE UNIVERSITY OF MICHIGAN ON THE 24TH OF JANURARY! THE TEAM HERE AT BEAUMONT JUST IS NOT UP ON ANY NEW INFORMATION REGARDING GBM!
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