I'm writing this from my infusion chair so that I can update all y'all in a timely manner. As you know from the last post, my CEA is elevated above the one before it. This last CEA was drawn last Friday, a mere few days since the CyberKnife was completed. The oncologist said that radiation takes a week or so to complete its job and while the tumor cells are dying they are releasing CEA antigen. I looked up half-life of CEA (half-life is the amount of time for half of something to degrade) and it's 5-7 days. So if we let the radiation finish its job and then allow for the 5-7 days to pass, this past CEA was just too soon to be useful. Now, the next CEA will be the one to pay attention to.
I'll keep you updated. :-)
Monday, November 26, 2012
Saturday, November 24, 2012
This Week's CEA
I'm finished with the CyberKnife treatments. My last one was last Monday, the 19th. Even though CyberKnife is much easier than surgery, it's still not a piece of cake. There's that whole lying still thing which makes body parts fall asleep, etc. And then I was very tired afterwards and the next day too. I slept a lot for the week and a half that I was undergoing it. Today I feel a little tired but that may have something to do with Thanksgiving and the very busy day we had yesterday.
My CEA yesterday was 12.7, up from 8.0 two weeks ago (which was actually down from 8.5 before that). We were hoping for a drop in the CEA level since I completed the CyberKnife treatments but I don't know what the half-life of the antigen is in my blood. It may take some time to degrade and decrease. It could also be that there are other spots getting ready to pop up. I suspect that the oncologist will say to wait to see what the next CEA is and at some time he will probably suggest changing my drugs when he suspects that the ones I'm on have no more usefulness. I'll also see when he'd like to do another scan. I'll see him on Monday.
When I know more you'll know more!
My CEA yesterday was 12.7, up from 8.0 two weeks ago (which was actually down from 8.5 before that). We were hoping for a drop in the CEA level since I completed the CyberKnife treatments but I don't know what the half-life of the antigen is in my blood. It may take some time to degrade and decrease. It could also be that there are other spots getting ready to pop up. I suspect that the oncologist will say to wait to see what the next CEA is and at some time he will probably suggest changing my drugs when he suspects that the ones I'm on have no more usefulness. I'll also see when he'd like to do another scan. I'll see him on Monday.
When I know more you'll know more!
Friday, November 9, 2012
My CyberKnife Experience
Yesterday I had my first CyberKnife treatment. What was supposed to be a 1 & 1/2 hour session took 4 hours. 4 hours of lying motionless. It's much harder than it sounds. Your joints are not used to being held very still.
I donned the Tron vest (as David is calling it) and headed to the room where Charlie (the CyberKnife robot) lives. The room also has a CD player so that you can bring music or an audio book. Yes, I said CD. CDs don't last as long as a 90-minute (or 4 hour) session, so they had to keep changing the CDs for me. Even with that, I still had to listen to a couple of them multiple times because I only brought in three. They said that the CD player also has a slot for a cassette. That's how far behind in times it is. Yes, they realize that nobody buys CDs anymore. What would it take for them to just put a docking station there with speakers for an iPod, iPhone, or other mp3 player? An audio-in line would be adequate along with an outlet to keep the audio device charged. We actually have a Sonos Play:5 which has a super duper set of speakers and a line-in. Next time I'm taking that with me and I'll make a 4-5 hour playlist on my phone and insist that they use it instead. It will be better than listening to a CD repeat itself. Anyway, I digress...
I got into position on the table, or bed, or whatever it's called. Positioning me includes many very small (like 1 cm) shifts. I just lie there while the two techs move me around to get the perfect placement. Then they left the room and said "here we go". I remained very still for a very long time while nothing seemed to be happening. In reality the sensors were watching me, watching my breathing, shifting the bed ever so slightly to get a lock on the markers that are in my liver. It was recording my breathing pattern so that Charlie could better predict movements related to breathing. As it turns out, when you are breathing your liver moves a lot. The diaphragm is moving it, the lungs are moving it. It sort of rolls with each breath, especially at the edge where my tumors are. So it took a very long time for it to get satisfied with a predictable pattern. Even with that, the techs came in a couple of times to make small adjustments to my placement, the placement of the LEDs attached to my vest, the LED sensors in the room. Then they left again with a "here we go". More long long minutes of lying very still. Finally, Charlie woke up and started to look at me. He moved around, looking for the markers, honing in on them, and then delivering radiation in (I assume) a very small stream to just the tumor. Two impressions: First, I felt an unexpected strong sense of gratitude towards Charlie because he was working on frying the tumor cells inside of me while doing no harm to the rest of me. Second, when I realized that he seemed to be breathing with me (moving back and forth in exact sync with my breathing to keep focused on the markers as my liver moved) I found that quite humorous. I had to close my eyes because it made me want to laugh. Which would throw off the rhythm of my breathing. If that happened, he would stop doing his work until he could re-acquire the markers. But anyway, for a very long time he moved around getting into multiple positions, breathing with me, zapping the tumor.
After that, when I was sure that 90 minutes had to be gone, Charlie went back to sleep and the techs came in. I assumed that we were finished and was happy about that because my right shoulder was becoming achy for being held so still. Unfortunately the techs told me that now they were going to set me up for the 2nd tumor. I didn't realize that all that time Charlie was only working on the first one. So, we did it all over again but the second one actually seemed to take longer. I was told that during the treatment Charlie kept having to re-acquire the markers over and over. I wasn't moving but I guess it was all moving too much inside and he only works when he gets a fix on the markers. After a very long time (again) he went back to sleep and we were finally finished.
I was glad it was over, but I have to do it 4 more times. But if I can do it once I can do it again. The doc said that the initial breathing monitoring that it did won't have to be so extensive next time because that's now saved in the system. So maybe we will shave 30 minutes off of each tumor and only be there for 3 hours next time. We'll see.
Afterwards I just felt exhausted. I didn't, however, feel any nausea and was very hungry. So that's good news.
Today I feel fine. The next session is next Monday. I'll be there with my super long playlist and my Sonos.
I donned the Tron vest (as David is calling it) and headed to the room where Charlie (the CyberKnife robot) lives. The room also has a CD player so that you can bring music or an audio book. Yes, I said CD. CDs don't last as long as a 90-minute (or 4 hour) session, so they had to keep changing the CDs for me. Even with that, I still had to listen to a couple of them multiple times because I only brought in three. They said that the CD player also has a slot for a cassette. That's how far behind in times it is. Yes, they realize that nobody buys CDs anymore. What would it take for them to just put a docking station there with speakers for an iPod, iPhone, or other mp3 player? An audio-in line would be adequate along with an outlet to keep the audio device charged. We actually have a Sonos Play:5 which has a super duper set of speakers and a line-in. Next time I'm taking that with me and I'll make a 4-5 hour playlist on my phone and insist that they use it instead. It will be better than listening to a CD repeat itself. Anyway, I digress...
I got into position on the table, or bed, or whatever it's called. Positioning me includes many very small (like 1 cm) shifts. I just lie there while the two techs move me around to get the perfect placement. Then they left the room and said "here we go". I remained very still for a very long time while nothing seemed to be happening. In reality the sensors were watching me, watching my breathing, shifting the bed ever so slightly to get a lock on the markers that are in my liver. It was recording my breathing pattern so that Charlie could better predict movements related to breathing. As it turns out, when you are breathing your liver moves a lot. The diaphragm is moving it, the lungs are moving it. It sort of rolls with each breath, especially at the edge where my tumors are. So it took a very long time for it to get satisfied with a predictable pattern. Even with that, the techs came in a couple of times to make small adjustments to my placement, the placement of the LEDs attached to my vest, the LED sensors in the room. Then they left again with a "here we go". More long long minutes of lying very still. Finally, Charlie woke up and started to look at me. He moved around, looking for the markers, honing in on them, and then delivering radiation in (I assume) a very small stream to just the tumor. Two impressions: First, I felt an unexpected strong sense of gratitude towards Charlie because he was working on frying the tumor cells inside of me while doing no harm to the rest of me. Second, when I realized that he seemed to be breathing with me (moving back and forth in exact sync with my breathing to keep focused on the markers as my liver moved) I found that quite humorous. I had to close my eyes because it made me want to laugh. Which would throw off the rhythm of my breathing. If that happened, he would stop doing his work until he could re-acquire the markers. But anyway, for a very long time he moved around getting into multiple positions, breathing with me, zapping the tumor.
After that, when I was sure that 90 minutes had to be gone, Charlie went back to sleep and the techs came in. I assumed that we were finished and was happy about that because my right shoulder was becoming achy for being held so still. Unfortunately the techs told me that now they were going to set me up for the 2nd tumor. I didn't realize that all that time Charlie was only working on the first one. So, we did it all over again but the second one actually seemed to take longer. I was told that during the treatment Charlie kept having to re-acquire the markers over and over. I wasn't moving but I guess it was all moving too much inside and he only works when he gets a fix on the markers. After a very long time (again) he went back to sleep and we were finally finished.
I was glad it was over, but I have to do it 4 more times. But if I can do it once I can do it again. The doc said that the initial breathing monitoring that it did won't have to be so extensive next time because that's now saved in the system. So maybe we will shave 30 minutes off of each tumor and only be there for 3 hours next time. We'll see.
Afterwards I just felt exhausted. I didn't, however, feel any nausea and was very hungry. So that's good news.
Today I feel fine. The next session is next Monday. I'll be there with my super long playlist and my Sonos.
Wednesday, November 7, 2012
CyberKnife Schedule
Yesterday I got a call from the Radiation Oncologist, otherwise known as the CyberKnife doctor. He told me that while the diagnostic scan showed one of my tumors to be next to my bowel, the more recent scans (done with my lungs full & empty) showed that the tumor is actually right next to my duodenum, which is the little C-shaped section of the small intestines that the stomach empties into. He said that this is a very complicated spot because the duodenum will get some dose of radiation during the treatments so in addition to the GI irritation (which can cause diarrhea) I'll also likely have some nausea. That can be controlled with Zofran (an anti-nausea medication) which also has a constipating effect so side effect #1 may be reduced or eliminated.
I will have my first session tomorrow afternoon. Because of the duodenum being right next to the tumor he will have to do lower doses of radiation than originally planned which means I will have five total treatments. Next week I'll do it Monday, Wednesday, and Friday and then my final one will be the following Monday.
The other spot, the one higher up, is also causing its own issues. That tumor is right on the outside edge of my liver too, right up against my ribs. It seems the little gold markers might be causing irritation and inflammation on the ribs right there because on*my* side of things (the outside) it feels bruised and abraded. Perhaps a marker is rubbing on the ribs. I'm taking an anti-inflammatory to help alleviate the discomfort and hopefully it'll resolve itself so it doesn't become chronic inflammation. I think it feels better than yesterday so maybe it's already getting better.
That's all I have for today. I'll let you know how the treatment goes tomorrow.
I will have my first session tomorrow afternoon. Because of the duodenum being right next to the tumor he will have to do lower doses of radiation than originally planned which means I will have five total treatments. Next week I'll do it Monday, Wednesday, and Friday and then my final one will be the following Monday.
The other spot, the one higher up, is also causing its own issues. That tumor is right on the outside edge of my liver too, right up against my ribs. It seems the little gold markers might be causing irritation and inflammation on the ribs right there because on*my* side of things (the outside) it feels bruised and abraded. Perhaps a marker is rubbing on the ribs. I'm taking an anti-inflammatory to help alleviate the discomfort and hopefully it'll resolve itself so it doesn't become chronic inflammation. I think it feels better than yesterday so maybe it's already getting better.
That's all I have for today. I'll let you know how the treatment goes tomorrow.
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