Last Monday, August 27th, I met with my neuro oncologist and neuro surgeon. I also got an MRI. The MRI revealed that my tumor had not grown back, there was just scar tissue. Also we got feedback from the UCSF’s pathology report. I can’t remember the technical terms that they used, but pretty much it was still unclear what the tumor actually was. The neuro oncologist said that they may never really know what it was. Because of that, they want me to start chemo and radiation combined for 6 weeks (starting soon) and then I will take chemo 5 days on, 25 days off for about 1 year. They could not compare my situation to anyone elses-they said they couldn’t look me up in a textbook to know exactly how to treat me because I had a tumor like no one else (or atleast hasn’t been documented). Both of my doctors said that they would discuss my treatment plan at a board meeting tonight (Wednesday 8/29) at UCLA to make sure everyone is in agreement before I get started. The chemo that I will be taking is not as aggressive as they originally planned on me taking (when they thought I had the pineal blastoma). But I will probably still experience side effects of nausea, drowsiness, lack of appetite, and low white blood cell count (decreased immunity).
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Robert l guess you’re one of a kind all around!
Nice to know the tumor is growing back and that it looks like they got it all. We enjoyed coming out and seeing you and the family this summer. We’ll try and keep everyone healthy around here for our next visit 🙂
I meant NOT growing back (that’s what happens when I type on my phone.)
So happy to hear about the tumor not growing back and there going to start treatment. The lord is watching over you and your family 🙂