CancerCompass message board discussion started by eulahmandy on 7/4/2008 http://www.cancercompass.com/message-board/message/all,25731,0.htm Sun, 23 Nov 2008 00:00:00 GMT Sun, 23 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My husband was DX11/7/07  GBM  had surgery 12/13/08 they had to leave two fingers in. He went on 32 treatments of radiation and temador at the same time. Then they started the 23/7. An MRI was done with inconclusive findings so they put him on Avastan/CPT11 every two weeks. He has now finished 4 treatments and an MRI is to be done on the 10th.The first two times he had the infusion of Avastan/Cptll he was out of sorts for a week. Then the third time it only took a couple of days to get back to feeling decent. This time its 5 days after treatment and he is weak as a kitten. His stomach is fine HIs head is fine he just is so tired and weak. He also is on Dilantun for 200 mg a day to avoid seizures. No Decadron for at least 8 weeks.I was hoping to talk to the doctor and see if they could get rid of the CPTll as that is the one that makes him so sick. Has anyone heard of them doing this. He is just so depressed cause he feels like he should at least be able to help around the house and be useful. This is no time for him to start thinking about giving up. His blood work is normal , no blood pressure problems. Just curious is this is (normal-whatever that is) when you are on Avastin. This site is great and it has helped me get through this ordeal. Thanks for listening.Eulah. eulahmandy Fri, 04 Jul 2008 00:00:00 GMT My husband did not have these issues on avastin/cpt11.  I know you said his blood work is ok. Did they check his dilantin levels.  There is a theraputic range that must be monitored very closely. It can cause symptons such as this.  It must be between 10-20.  You must never take the generic for dilantin because apparently it does not regulate the theraputic range as well.  Gbm Wife Fri, 04 Jul 2008 00:00:00 GMT  On 7/4/2008 eulahmandy wrote:My husband was DX11/7/07  GBM  had surgery 12/13/08 they had to leave two fingers in. He went on 32 treatments of radiation and temador at the same time. Then they started the 23/7. An MRI was done with inconclusive findings so they put him on Avastan/CPT11 every two weeks. He has now finished 4 treatments and an MRI is to be done on the 10th.The first two times he had the infusion of Avastan/Cptll he was out of sorts for a week. Then the third time it only took a couple of days to get back to feeling decent. This time its 5 days after treatment and he is weak as a kitten. His stomach is fine HIs head is fine he just is so tired and weak. He also is on Dilantun for 200 mg a day to avoid seizures. No Decadron for at least 8 weeks.I was hoping to talk to the doctor and see if they could get rid of the CPTll as that is the one that makes him so sick. Has anyone heard of them doing this. He is just so depressed cause he feels like he should at least be able to help around the house and be useful. This is no time for him to start thinking about giving up. His blood work is normal , no blood pressure problems. Just curious is this is (normal-whatever that is) when you are on Avastin. This site is great and it has helped me get through this ordeal. Thanks for listening.Eulah.  I sent you a private reply Wissis Sat, 05 Jul 2008 00:00:00 GMT HI: My wife was started on Avastin / CPT-11 and could not tollerate the CPT-11. They stopped it after the first infusion and she is not on her 13th Avastin Treatment. All she takes is Avastin and Keppra (for seizure prevenion. So far no tumor re-growth Hope this helps. C VA Husband Sat, 05 Jul 2008 00:00:00 GMT