josh: Been a while since I posted, so I'll catch up. I have been doing the 5 day on / 23 day off chemo plan, and I'm still in the immunotherapy trial that has an infusion every 2 weeks.
I started the TIRR rehab program to help get my language function back up. I have still been having some problems with noun finding ("anomia") and memory -- these were manageable and didn't affect my ability to work, but I have been looking forward to getting all the way back to normal as soon as I can. The TIRR program is very good - I get exhausted after a session there and I think I could see some improvement right away.
Unfortunately, I had a spooky MRI last week - there's a new thing that could be a tumor. It's not close to the tumor that got cut out last October. Here's a picture from the MRI (the thing was not there at all as recently as January 8, when I got my last MRI before this one):
I'm learning more and more about the brain - this thing actually starts in the middle between the left and right hemispheres, and then pushes to the left parietal lobe. The October tumor was in the left temporal lobe. It's worth noting that when glioblastoma comes back, it usually does so really close to the location of the last tumor. Not what's going on here.
So it's not clear what this is - it could be a new tumor (which would be "progression" of the glioblastoma, which would suck, of course), or it could be inflammation or something, perhaps caused by one of my treatments. I don't have any symptoms from it at all. If it started causing problems, they would be with my right leg - probably I would lose the feeling and maybe the motor control of it depending on how the thing got bigger.
I'm going to go back for surgery to remove this next week. We're thinking it will be less intense than the October surgery -- I'll be able to be asleep for the whole thing, for instance. They'll do a biopsy on what they take out of course, and then we'll know for sure what it is.
As you might guess, we've put things like chemo and TIRR on hold for now, but I will be getting an immunotherapy infusion the day before the surgery, which is cool.
I'll post updates, and/or, as before, Jane can post updates about how things are going.
josh: hey everyone! My chemo vacation is sort of over, but at least now it's 5 days on and 23 days off. I just finished the first 5 day part. I take pills at night before I go to bed - they come in a bag like this:
Nothing foreboding about that...
The dosage is about twice what I was taking before, and so I feel it a little more (especially on day 5 ... glad it's over for a few weeks), but it's still not nearly as bad as I think some other types of chemotherapy drugs are. I heard there have been recent side-effect improvements on some of the worse ones, but I don't know anything specific.
The drug is called temozolomide or Temodar, and it has been in standard use for GBM since 2005 I think.
Wikipedia says "The therapeutic benefit of temozolomide depends on its ability to alkylate/methylate DNA" - not that I really know what that means, but as I mentioned in an earlier post, the pathology report for my GBM says that it's "MGMT: unmethylated". That unfortunately means that it's not really impacted by temozolomide (or any other chemo drug, I guess), but taking the drug anyway is part of the standard of care.
josh: OK - I'm taking a shot at it. I can't be 100% sure that I'm showing the right pictures. I'm using a free program called mango to view the images that I downloaded, and I'm taking screen shots of what I think is important -- that is to say, what reminds me of things that my neuro-oncologist showed me which were indeed important.
The thing that is giving me doubts is that the software in the doctor's office shows the left and right sides of the images in a way that seems reversed to me (but is well marked) -- I think this is due to the way/approach the MRI records the information. For that reason, my problem area, which is on my left side, shows up on the right side of the pictures I see in the doctor's office.
What I'm seeing in mango shows up on the left side, but I don't see indicators that would inform me that the sides appear reversed - I still have a lot to learn about this stuff. Anyway, enough disclaimers:
I think this would show the images from bottom (the first one ) to middle (the last one) of the area that I'm guessing is important. The view is from top to bottom or bottom to top - not sure, but I'm sure it's not front to back or back to front. That sort of S shaped thing on the left of each picture would be a slice of the top of my ear.
I'm *pretty* sure I'm looking at the "contrast" images for pulling these screenshots - for the last part of the MRI, they inject you with something that will show up bright white when it mixes with water.
Yes, tumors show up as white in contrast images, but in this case, it would be an area of damage/recovery from the radiation treatment. And the area surrounds the now shrinking hole from the surgery (the center of the donut - haha). So if you look at the last selfie that I posted, this is what would be going on behind the newly hairless part by my ear.
At least that's my interpretation based on what my doctor told me when we were looking at the images together.
josh: Had a MRI a couple of days ago and my neuro-oncologist told me that it looks good - yay!
I have electronic copies of the files of the MRIs I have had done, and one day I hope to get to the point where I can post pictures from them, but I have a way to go. The doctors can zoom right up to the right view, but it's taking me forever to get used to the software that looks at the data files and go to the right place.
I'll be getting another MRI every two months or so. I'm back on the immune therapy trial now, and will start chemo back up soon, but it won't be every day like it was for that 6 week initial period alongside radiation - more like a few days on, and more days off over and over.