I sent this mail to people at work and thought I'd post here and help Becky out some. :)
I’ve been asked multiple times for an update on what’s going on with me. I was waiting until my next MRI to send out email. I went in for the MRI on Monday and met with the oncologist yesterday.
Overall, it was a good visit. They’re going to start weaning me off the anti-seizure medicine slowly (~1 pill every office visit which is every 4 weeks) since I haven’t had any episodes since before my surgery in March (>6 months). I’m taking 8 per day now just for anti-seizure. They can’t take me completely off them, so I figure we’ll try to at least get me off the Keppra and then I’d just take 2 per day. That’s what I’m shooting for anyway :).
I get an MRI every 8 weeks. There are 2 main things that they look for in the MRI – the area around where they took out the tumor (it’s just a cavity and won’t ever fill in) and any additional activity in my brain down to my shoulders (including my upper spine). The area around the tumor is healing nicely and the dye they put in gives an accurate picture of what’s going on around the tumor location. 3 MRI’s ago it was lit up pretty bright and they said that was probably scar tissue, blood, etc. Last MRI it was shrinking some, so it was healing. This MRI is was almost completely gone. This was an indication to the doctor that the chemo is working, which is good.
Prior to this MRI they gave me a CD so the doctor could look at images on the CD. My doctor requested last time that for my next MRI, I get the actual films. So I asked for those this time and that’s what they looked at. The second part of the MRI that they look at shows any lit up areas outside the tumor area. Glioblastoma can frequently come back in other locations – even your spine. There was one location that the radiologist thought “changed”. Now, they’re kind of comparing apples to oranges because the films show more detail than the CD images. This lit up area was on my last MRI as well, but looks like it has shifted a tad bit. The oncologist was showing me the film and a printout she had from my last MRI. She talked it over with another doctor in the office and they think that it’s still the radiation in my head (which is going to be there for years) and that the radiation is moving. I asked her 3 times if I should be concerned and she kept saying “no”, but that this is something we want to watch. Now I’m going to be nervous for the next 8 weeks :).
My next MRI is scheduled for 8 weeks again. I guess if she was concerned she would have scheduled it sooner because the tumor grows so fast. This lit up area is in the left frontal lobe again, so if I notice any mobility issues on my right side or seizures to let them know. She said the next MRI is going to be a perfusion MRI, in which they can watch the blood moving throughout my brain and since the tumors require more blood, it’s an indication that something is growing there. If not, then it’s the radiation.
I’m still on double chemo 7 days on and 7 days off. I have my good days and have my rough days. But I’m thankful for each day the Lord gives me. I still ask for prayers because I couldn’t do this without them. We’re still praying for a miracle!