annem

My husband was first diagnosed in Oct. 1998.  He presented with a brain tumor and no primary was ever found.  He has exihibited signs of dementia since about 2005 and was put on various antipsychotic drugs to control delusions (nothing violent, just thinking people were coming to see him when they weren't, only strange thing was thinking people were in jail for things, which is why I agreed to the antipsychotic drugs).  After the stroke in 2009 left him with the inability to talk I took him off of all drugs except the antiseizure meds.  We are not going to do a PET scan – getting the MRI with contrast was difficult enough for him since he doesn't talk and I'm not sure how much he understands.  I do not want to do anything that is invasive or stressful.  I basically want to know what to expect and I do not want him to be in pain.  After speaking to his neurosurgoen and searching the internet I think what they will probably diagnose is brain necrosis.  He had 15 rounds of WBR and I think most of the symptoms he has experienced since 2003 are from this rather than disease.  From what I have read, brain necrosis is deadly and the only treatment is Avastin, another very, very strong chemo drug with lots of side affects.  I am meeting with his oncologist next week.  Thanks for your reply – if you have any experience with brain necrosis, please let me know. 

My husband was first diagnosed in Oct. 1998.  He presented with a brain tumor and no primary was ever found.  He has exihibited signs of dementia since about 2005 and was put on various antipsychotic drugs to control delusions (nothing violent, just thinking people were coming to see him when they weren't, only strange thing was thinking people were in jail for things, which is why I agreed to the antipsychotic drugs).  After the stroke in 2009 left him with the inability to talk I took him off of all drugs except the antiseizure meds.  We are not going to do a PET scan – getting the MRI with contrast was difficult enough for him since he doesn't talk and I'm not sure how much he understands.  I do not want to do anything that is invasive or stressful.  I basically want to know what to expect and I do not want him to be in pain.  After speaking to his neurosurgoen and searching the internet I think what they will probably diagnose is brain necrosis.  He had 15 rounds of WBR and I think most of the symptoms he has experienced since 2003 are from this rather than disease.  From what I have read, brain necrosis is deadly and the only treatment is Avastin, another very, very strong chemo drug with lots of side affects.  I am meeting with his oncologist next week.  Thanks for your reply – if you have any experience with brain necrosis, please let me know. 

My husband was first diagnosed in Oct. 1998.  He presented with a brain tumor and no primary was ever found.  He has exihibited signs of dementia since about 2005 and was put on various antipsychotic drugs to control delusions (nothing violent, just thinking people were coming to see him when they weren't, only strange thing was thinking people were in jail for things, which is why I agreed to the antipsychotic drugs).  After the stroke in 2009 left him with the inability to talk I took him off of all drugs except the antiseizure meds.  We are not going to do a PET scan – getting the MRI with contrast was difficult enough for him since he doesn't talk and I'm not sure how much he understands.  I do not want to do anything that is invasive or stressful.  I basically want to know what to expect and I do not want him to be in pain.  After speaking to his neurosurgoen and searching the internet I think what they will probably diagnose is brain necrosis.  He had 15 rounds of WBR and I think most of the symptoms he has experienced since 2003 are from this rather than disease.  From what I have read, brain necrosis is deadly and the only treatment is Avastin, another very, very strong chemo drug with lots of side affects.  I am meeting with his oncologist next week.  Thanks for your reply – if you have any experience with brain necrosis, please let me know.