One patient with glioblastoma still alive nine years later
by Tracy06 on Fri Aug 22, 2008 12:00 AM
My sis had her PET/CT scans done and we saw the surgeon and oncologist this week. Her hemoglobin has come up one point which is good (at 9.4 now)She is going to get IV iron on Monday.
PET scan showed some faint "lighting up" of some lymph nodes under her arms but the doctor couldn't feel anything out of the norm there. So apparently there are some cancer cells there. I try to focus on the fact that no other organs were showing anything on the PET scan so that is good.
She was very disappointed at that PET scan thinking it has spread but that is the first PET she has had done so that is her baseline for now to see how she does with treatment.
THe surgeon told the oncologist that he wasn't confident that the chemo would shrink the tumor and that it was really "bulky". I have not yet read the PET scan report but will do so this weekend. Oncologist said he was confident in his drugs and we were going to proceed with chemo. He found some literature of a recent study done in Germany that has the best response rates of any other study ever done. He is going to give her 5FU/leucovorin, Oxaliplatin and then add Avastin once she's completely healed from the surgery. We are praying that that shrinks the tumor away from the portal vein so they can go back in and do surgery again though the surgeon wasn't very optimistic about it which concerns me. We will see.
Wanted to let everyone know also about a book called "Crazy, Sexy Cancer" by Kris Carr (I belive is the name). I bought it and read it and gave it to my sis who has about finished reading it. It is good. Kris was a 31 year old woman diagnosed with an extremely rare cancer of the lining of the blood vessels in the liver and lungs, stage IV. She tells her journey and gives good advice to those with cancer. Best thing is she has a great sense of humor and the book is funny! Good read.
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