phyllischarles

phyllischarles's Recent CancerCompass Activity

• phyllischarles has created a new message board discussion

  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?

  April 22 at 5:00 PM view discussion

• phyllischarles has created a new message board discussion

  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 bec...

  April 07 at 1:21 AM view discussion

• phyllischarles has replied to a post on the message board

  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.

  April 03 at 4:23 AM view post

• phyllischarles has replied to a post on the message board

  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,

  March 22 at 5:49 AM view post

• phyllischarles has replied to a post on the message board

  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

  February 19 at 12:44 AM view post

• phyllischarles has replied to a post on the message board

  What is CCNU?

  February 19 at 12:28 AM view post

• phyllischarles has replied to a post on the message board

  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!

  January 15 at 10:42 PM view post

• phyllischarles has replied to a post on the message board

  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?&nb...

  January 15 at 10:34 PM view post

• phyllischarles has created a new message board discussion

  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

  January 15 at 10:11 PM view discussion

• phyllischarles has replied to a post on the message board

  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!

  January 13 at 6:33 PM view post