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.
josh: Today I finished the initial part of the Stupp Protocol, which means I get a few weeks break from chemotherapy and I'm *done* with radiation! No more mask! The mask is how they lock you in place to make sure that you won't move and get radiation in the wrong place - nobody wants that :)
The team who operated the treatment was great - very friendly and encouraging people (they even gave me the mask), and the environment for the treatment was nice too - lots of soothing pictures and music playing. You could request music, but I pretty much never did - more on that in a moment. To celebrate the end of the radiation portion of the protocol, they have a bell for you to ring:
OK - I keep going back to music with these posts. The music thing in the radiation room was really nice, but I always got stuck when they asked me what I wanted to hear, and all but once wound up listening to whatever the last patient request had been. It was mostly country music. I'm not a huge fan of recent Nashville based country (which it often was), but sometimes it was good. The treatments are pretty short if nothing goes wrong - like 10 minutes - so I couldn't get to picky about what was being played.
But I got unexpectedly hung up when I tried to think of what sort of music I, myself, for me, wanted to listen to while getting radiation zapped at the left temporal lobe in my brain. I would think of the cancer and how much I would like for it to get popped -- Geto Boys (locals - from just a couple of miles away!)? Hmmm... What about the overall attack on the enemy? One day I mentioned "Search and Destroy" by the Stooges. Is that really appropriate? Hmmm... looking for things and destroying them... with, um, technology?... actually mentions radiation in the lyrics... They played it, and I suppose I got a kick out it, even though my brain was the venue for all that aggression.
The actual song is even more complex in its own right - James Osterberg (Iggy Pop) had read an article about certain operatives in the Vietnam War and thought about the hopelessness, overwhelming abandonment, unacceptable reality of what they were charged to do, and other awful things the draftees must be going through, I think. Definitely not a pro-war song, but neither was it an anti-soldier song.
The most recent band I was in (shameless Stooges fanboys - almost a tribute band, really), Flying Monkease, covered the song. I just could not get over the fence about asking the radiation team to play our version -- just seemed like it would be going too far. We recorded and mixed the song in my studio - I think even closer to the radiation therapy center than the Geto Boys, with our notorious singer Ron Knice, our unstoppable bass player Urian Perez, me on guitar, and because we had lost our sixth (6th) drummer, I did the drums on the computer. This is neo-proto-punk rock (haha) and may not be appropriate for all listening environments: