Looking for options

5 Posts | Page(s): 1 

Looking for options

by KB1263 on Mon Oct 05, 2009 12:00 AM

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Well,  Recurrence has hit us yet.....once again.  This time the scan looks much worse, but we haven't met with the doctors to get the official word.  I did get a call from our local oncologist, who said the report indicated growth, but he wanted to let our doctors at Duke weigh in to see where we are.  Bummer!  It wouldn't be so difficult, but my husband has began to deteriorate clinically.  He is dragging his right foot, slightly, yet all the time, as opposed to once in a while.  His short term memory is worsening and last night, while driving, he began to hug the right side of the road with the car.  I hated having to make him pull over and take over driving, but he didn't even realize he was doing it.  For right now, there will be no driving for him.  It's just too risky.  We've done standard treatment  (Rad./Temodar),  (CPT-11/Avastin), (CPT-11/Carboplatin/Avastin), & most recently (VP-16/Cytoxan/Avastin)  Any ideas for us????????????  Anyone using another cocktail that's working other than these.  All that we've tried work pretty well, but the tumor gets too smart and figures out a way to grow around the meds.  Looking for options... Husband dx 8/07.

KB1263

RE: Looking for options

by gulerina on Mon Oct 05, 2009 12:00 AM

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My husband had a GBM and went through the standard surgery Radiation/Temodar. Once the tumor reoccured he had surgery again followed tried NUMEROUS treatment-none were able to keep the tumor at bay for very long. One thing he was offered, but we turned down, was radiation again. THey don't often suggest that and there's no guarantee it will work, but for some people it can help I guess.

We opted not to do the radiation-felt the cons far outweighed the POSSIBLE pros.

Good luck

RE: Looking for options

by Heritage_Softail on Mon Oct 05, 2009 12:00 AM

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Try looking here for trials. The tumors can get smart and that SUCKS!

http://clinicaltrials.gov/ct2/results?term=GBM

My NO is working with thalidomide you shouold see on the list. This will be my cocktail is all fails. God Bless

Damon

Dx Nov 07

RE: Looking for options

by predisposed on Mon Oct 05, 2009 12:00 AM

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Gliadel, Novocure, vaccines?  Lots of stuff you might be interested in seems to only be available in trials, hard to qualify for them, and it's so frustrating.

Wishing you and your husband all the best and God Bless.

RE: Looking for options

by KB1263 on Tue Oct 06, 2009 12:00 AM

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Thank you all for sending information.  Our appt. Thurs. and I want a healthy list of questions and possibilities to discuss with the doctors.  You all have been most helpful.  :)
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