Post by gr8ful1 on Jul 31, 2013 13:56:18 GMT -6
I've posted on here before. Now that some things have changed, I wanted to post again:-). (I posted this in the astrocytoma section, but moved it here).
My husband is 46 years old. He had surgery in September 1998 to remove an astrocytoma (T11-L2) which unfortunately left him paralyzed from the waist down. Back then we were both young and naive and didn't even think to get a second opinion. Medical technology wasn't as awesome as it is now too.
Long story short - he's had a myriad of issues as a paraplegic -- and he had recurrences in 2003, 2007, 2009 and 2012. He's taken Temodar, VP-16 (etopiside), Camptosar and Avastin. He wants to quit everything except the Avastin. The neuro-oncologist he sees has been with him since 1998, although he mainly handles brain tumors. I don't know what grade the tumor is now, but the doc has referred to it as malignant (although as I understand it, these tumors will never go outside his central nervous system).
I have hope to read how some of you are survivors of more than 20 years. Some of the information found on the internet has much lower survival rates. I want to support him in his decision to stop the Camptosar (chemo) and just take the Avastin (biologic), plus there's conflicting information on whether chemo even helps astrocytomas. He did have shrinkage from the last tumor found in December of 2012, but the NO attributes that to the radiation he had. My husband has had the most radiation his body can handle at this point (according to both the radiation oncologist and NO). He's running out of options at this point.
His NO advised that taking the Avastin can still be a good thing, because it can kill the blood vessels feeding the tumor, but also said it will be important to keep close tabs on his urine because too much protein in the urine can cause issues. He started Avastin in April of 2012. He has to take blood pressure medicine because Avastin causes high blood pressure.
I just keep searching on the internet for answers. But I'm not really sure why since my husband doesn't really want to do anything else at this point except the Avastin. Does Dr. Jallo give advice? I don't know if sending an MRI would make a difference or not at this point.
My husband is 46 years old. He had surgery in September 1998 to remove an astrocytoma (T11-L2) which unfortunately left him paralyzed from the waist down. Back then we were both young and naive and didn't even think to get a second opinion. Medical technology wasn't as awesome as it is now too.
Long story short - he's had a myriad of issues as a paraplegic -- and he had recurrences in 2003, 2007, 2009 and 2012. He's taken Temodar, VP-16 (etopiside), Camptosar and Avastin. He wants to quit everything except the Avastin. The neuro-oncologist he sees has been with him since 1998, although he mainly handles brain tumors. I don't know what grade the tumor is now, but the doc has referred to it as malignant (although as I understand it, these tumors will never go outside his central nervous system).
I have hope to read how some of you are survivors of more than 20 years. Some of the information found on the internet has much lower survival rates. I want to support him in his decision to stop the Camptosar (chemo) and just take the Avastin (biologic), plus there's conflicting information on whether chemo even helps astrocytomas. He did have shrinkage from the last tumor found in December of 2012, but the NO attributes that to the radiation he had. My husband has had the most radiation his body can handle at this point (according to both the radiation oncologist and NO). He's running out of options at this point.
His NO advised that taking the Avastin can still be a good thing, because it can kill the blood vessels feeding the tumor, but also said it will be important to keep close tabs on his urine because too much protein in the urine can cause issues. He started Avastin in April of 2012. He has to take blood pressure medicine because Avastin causes high blood pressure.
I just keep searching on the internet for answers. But I'm not really sure why since my husband doesn't really want to do anything else at this point except the Avastin. Does Dr. Jallo give advice? I don't know if sending an MRI would make a difference or not at this point.
