Jun 05, 2010 - 2:06 pm
My husband had a spinal tumor found February 28th, we got the pathology back from Brigham & Womens and John Hopkins saying GBM mid March. His brain is clear, no tumors there. They removed about 80% of the tumor surgically and he's done Radiation and Temodar for treatment. The first MRI after treatment has shown no new growth, we have another MRI later this month to check for growth etc. He's just finnished his first week of maintenance Temodar last week- 300mg 5 days. Two days after finnishing that dose was pretty ugly, he got so sick this time. He had an MRI on his brain because he's been having terrible headaches, but in the last 4 weeks he's had 2 CT scans and they were clear.
This whole thing has been such a rollercoaster and crazy, it's like he takes 1 step forward and 2 steps back. The Tumor effects his left leg function and some of the bladder and bowel function, though thankfully it hasn't been too bad there.
He's also on dexamethazone (steroid) for the swelling around the surgical site and the tumor, has been on it since January actually, every time we step down something new happens and we have to go back up. He hates the puffy face that comes from the steroid but needs to stay on it to be able to walk.
He's had a pulmonary embolism that "should have killed him" and is also on odin to prevent any more of them, which lead to nose bleeds that were un-stoppable. Like I said, roller coaster.
Prior to this GBM, he was a healthy 37yr old. We have 2 kids- a 12 yr old and a 4 yr old, and one on the way (in the next 4 weeks actually). The 12 yr old is pretty aware of the situation, but we try to keep everything all positive with both kids... to say this whole thing was unexpected would be an understatement, for sure. It's so hard to even imagine what's comming next, or what to look for since it's not in his brain, started on his spine and hasn't spread so far... I would love to connect with others that are going through this- and it would be very helpful to know if there is anyone else out there where their tumor started in the spine?
Our neurologist is working with doctors all over the place, specifically Duke medical, as well as our Radiation Oncologist and regular Oncologists are working with docs at Sloan, & Brigam and Womens.