Slow News Day

If you are on Facebook then you probably already know that my last CEA was 8.2, down from 12.7 two weeks before. That's a step in the right direction. I don't actually expect the doc to do another scan until my CEA is up again since tumor growth and a rising CEA has always gone hand in hand with me. So I don't know when to expect the next one, really. The next CEA will be checked on January 1st, so no news will be forthcoming until the new year. 

In the meantime, we will be enjoying the sand and sun in the Caribbean for Christmas. I hope you have a great Christmas and a happy New Year!!

The Doc's Take on the CEA

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. :-)

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 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.

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.

My Liver Jewelry

Two days ago (Friday) I was scheduled to go see an Interventional Radiologist to insert the tiny gold markers around both of my small tumors and possibly collect some suspicious material for a biopsy to confirm that they, are in fact, metastasis. I was instructed not to eat or drink anything after midnight, and I complied. I'm good at that. I arrived at 9:00 for what was scheduled to be an 11:00 procedure. The IR had a very laid back attitude, or was overworked possibly, so he didn't get to me until 1:00 or so, I think.

I was taken into a room with a CT scanner and prepped for the procedure. They positioned me, placed sicker grid markers on my ribcage, and then the IR went back and forth from something behind me (probably a monitor) with a marker and marked the entry spots on my side, using the grid lines for reference.  Then they gave me the sedative cocktail. A few minutes later they asked me if I felt it at all and, honestly, I didn't feel any different. (Too bad because I DID feel the "numbing" injections, which was the worst part of it all.) So they gave more to me. And then more. Finally I drifted off into a cloudy space, though I was still aware of some of the procedure.

Since I was in a cloudy space I can't tell you how long the marker placements actually took. I do know that a needle was inserted in the spaces between my ribs to place the markers. But until I remove the bandages I don't actually know how many punctures I have.

I gradually came to in the recovery area. I slept some, ate a tiny bit (which I lost on the car ride home - thank goodness for nice, big, thick high-quality doggie poop bags) and eventually came out of the cloud enough to go home.

When I got home I was very tired. It hurt to take a moderate breath. I couldn't stay awake. I headed right to bed for a nice long nap. Luckily my appetite had returned by evening and I helped David eat a nice Hawaiian pizza. It was the only thing I had all day.

I felt better the next day (yesterday) though I was still a bit tired and my side was still sore. It hurt to breathe deeply, laugh, cough, or sneeze.

Today I feel even better. I can breathe deeper now. Laughing, coughing, and sneezing still cause some discomfort but it's better.

I was given instructions not to lift more than 10 pounds for two weeks so I get to ask David for a lot of little help. Which he's happy to give. :-)

I think now I'll go out to the garden with him to supervise while he helps plant this years' garlic crop.

My Visit With the Radiation Oncologist (or CyberKnife Doctor)

David and I met with the CyberKnife doctor today, otherwise known as a "Radiation Oncologist". Having done some research we feel we already know a little bit about what to expect but he filled us in on the details. Luckily David took a lot of notes. Here's what the doc said:

First he listed the three options that I have to rid my liver of these two tumors.

1. Surgery (liver resection). I'd like to avoid it.
2. Microwave ablation. This isn't a good option because one of the tumors is on the edge of my liver right next to my large intestine and microwave ablation would risk the health of the intestine.
3. CyberKnife. It's painless and should be side-effect free. There's a risk that my large intestine can get irritated near one of the treatment sites but it would cause GI discomfort for a couple of days and then would return to normal. I think I can handle that. Perhaps they can inject some gel to "push" my large intestine over to get it off of the edge of my liver.

So, this Friday I will go to the hospital to have a CT-guided biopsy. At that same time tiny gold beads (or seeds) will be placed around the tumors. These beads will tell the CyberKnife exactly what to focus on. If the biopsy is negative then I just go up in value as the price of gold increases. If it's positive then we move ahead with the next steps. And my value will still continue to fluctuate with the price of gold because the beads will just stay there.

3-7 days (so sometime next week) I'll return to the CyberKnife center for a CT scan to make sure the beads are still exactly where they put them. There's a chance they can shift since the liver is so vascular.

3-5 days after the CT scan I'll then go back to the CyberKnife center to start the treatments. This should be the week of November 5th. He said that I will have 3-4 treatments. If it's three then it will be Monday, Wednesday, and Friday. If he squeezes a fourth treatment in (which would be done if he has to turn down the radiation dose for any reason) then it would probably occur on Thursday. I would lie on the table in a large room (all by myself) that contains a small CD player and a large robot. I'll be there for about 90 minutes each time. The first 15 minutes will be the special LED-fitted vest taking measurements to get a good fix on my breathing pattern. Once it has my motions down so that they are predictable then the robot will start to move around me and do its thing. He said I may be a little fatigued afterward but I expect that to be mild. I will go home after each of these. That's one huge advantage to not choosing surgery: No hospital stay! Plus with surgery I'd have to go off of the Avastin for a few weeks which would delay the surgery at least a month. With CyberKnife I can take care of it starting right away with no interruption to the chemotherapy regimen.

After the three (or four) treatments they would follow up usually with a PET scan. A CT scan can actually still see the tumors, even if the cells are now dead. So the CT scan may not be a reliable indicator of effectiveness except for if the lesions grow in size. That's why they use a PET scan because a PET scan is looking for metabolic activity. The problem with me is that the PET scan only saw one of these tumors. The one it did see had little metabolic activity and the other one must have been below its threshold. So a PET scan may or may not be helpful in following up. They will just have to use a combination of PET scans, CT scans, and the CEA blood tumor marker to assess the success of the treatments. All that said, he said that these are so small that he expects this to be completely effective. The only way to be certain that these two spots are gone for good is to surgically remove them but I just don't want to go through another abdominal surgery if the CyberKnife can almost definitely kill these tumor cells.

I actually have a couple of pictures to share with you. These are cross sections of my abdomen. If you can imagine that I'm lying on my back and you are looking through my feet that will help you get your bearings. The tumors and some landmarks have been labeled.

The first image is higher up on my liver, closer to my head. That tumor is the smaller one and it's on the front of my liver. The second image is lower down nearer my bowels. It's on an inside edge of my liver. The doctor also pointed out the area of my previous surgical resection (back in 2009) so I noted that on the image below.

Actually I have to give proper credit to David here. He made all of the annotations for me since he has the tools for that on his computer.

CT Scan Report

Yesterday I had a follow-up CT scan performed to confirm the PET scan findings. It found two small spots on my liver. We will meet with the oncologist on Monday to discuss the strategy. I suspect these are CyberKnifeable unless one of them is too small. I'll let you know what we know as soon as we know it. :-)

Here's the report:

This Week's PET Scan Report

As you know, we have been getting worried because my CEA level has been steadily rising. Since my last post here are the CEA readings:

• 9/14:   3.8
• 9/28:   4.7
• 10/12:  6.4

Those jumps the last two times have had us particularly worried, and the oncologist agreed that it was time to run the next PET scan. My last scan was July 5th of this year.

Here is the report:

What this boils down to is that there's a suspicious spot on my liver that's just under 1 cm in size. The PET scan is great at detecting activity but when something is found in certain areas (like the liver) they like to follow up with a CT scan to get a very detailed image. Later this week I should be scheduled for a follow-up triple phase CT scan which will give us a better idea about what's going on, and it may (or may not - let's hope for not) find some additional activity that may be smaller. If this is an isolated lesion then it may be removed with the CyberKnife procedure. You can find out what that's all about here: http://www.cyberknife.com/. The patient brochure (a pdf download) gives some great information about the procedure. The oncologist said that if CyberKnife is an option for me it can make this go away with just 2-3 CyberKnife treatments and we won't even have to interrupt our current chemotherapy treatments to do it.

I will likely get the CT scan on Thursday. There's a chance I can get a copy of the report on Friday. If not, I'll get it next Monday (a week from today) when I return to see the doctor. Of course I'll keep this blog (and Facebook) posted.

On a different, but related, subject I have no idea what the significance is of my MediPort catheter tip being in the atrium of my heart. I assume that's where it's been for the last three years and I 'm not sure why it's being noted in this report. I can ask the oncologist (and also my primary doctor, whom I see next week as well) about it when I see them.

Until then, that's it for now.

Not Much to Update

I know, I know... I still haven't posted my latest PET scan report yet. Sometimes things slip my mind!! My last PET scan was on July 5, 2012. Here is the report:

And here are the CEA levels since my last post:

• 7/6:  2.8
• 7/24:  2.8
• 8/3:  3.3
• 8/17:  3.7 (Starting to get worried...)
• 8/31:  3.0 (Whew!!)

I had my 29th infusion of Avastin yesterday since this maintenance chemotherapy was started on 7/18/2011. Before every infusion I meet with my oncologist to go over any laboratory or scan results. He was visibly pleased with the dip in my CEA level this time. Originally his plan was to repeat the PET scan after every 6 treatments with modifications to this plan when the CEA indicates that a scan should be done sooner or can be pushed out. At this time he feels that perhaps we can scan after 8 treatments since my last scan. That scan was on 7/5/2012. You can see from the CEA results (it's checked before every Avastin infusion) that I've had 5 infusions since my last scan. We will keep an eye on the CEA and if it starts to go up again then perhaps we will do a scan sooner but I think the current plan is to do 3 more infusions before doing the next scan.

I'm comfortable with this. I'm starting to go to the gym again and we got a new bed so I'm sleeping very well. I'm eating well. Stress is relatively low. I'm managing this the best way I can, and it seems to be working, at least for now.

Update on CEAs

Since my last PET scan (April 12th) my CEA has still been on a bouncy journey up. Here is the summary of the CEA results since then:

• 4/13:  2.3
• 4/27:  2.0
• 5/11:  2.1
• 5/25:  2.6
• 6/8:  2.5
• 6/22:  2.9

The previous results since January:

•  1/6:  1.0
• 1/23:  1.2
• 2/3:  1.2
• 2/17:  1.6
• 3/1:  1.8
• 3/9:  1.8
• 3/23:  2.1

You can see as well as I can that the overall trend is a bumpy upwards one. I see my oncologist every other Monday, and also get a Avastin infusion then, and tomorrow will be my next appointment with him. I believe he already planned to order a PET scan for me - his plan being to do one after 6 treatments since my last PET scan. So, I expect to be doing a PET scan probably on or about July 5th. My CEA will be repeated on Friday, July 6th as well.

I am posting this update as just an update, not as a reason to rile some people up or to cause some to go into a "it could be something else" mode. I have come to terms with the fact that I have to accept blood test and scan results for what they are: data gathering tools. My oncologist trusts them and I trust them. I'm not panicking (and probably won't ever really panic as that has no usefulness) and my wish is that you not go into panic mode either. I also don't need to spend any energy trying to decide whether to convince anyone that the test results are not to be disregarded, at least from my perspective. I like to post these updates so that those who like to keep updated can do so, and so that "this" doesn't sneak up on someone in the future. One thing I can take for granted is that nobody can admonish me for not keeping them informed!!

So, please take this post for what it is: simply an update to give you the overall picture at this moment. I'm cautiously worried, naturally, but that's normal I guess. And I'll keep you updated if anything changes.

Friday the 13th PET Scan and CEA Results

Greetings to all...

Yesterday I had a PET scan. I'm probably not radioactive anymore, but no promises!! Basically there's still no sign of activity. My CEA was run today and it's still up a little bit more. Today it's 2.3, up from 2.1 last time. It's going up very slowly. I do believe that it's steadily increasing for a reason and that it's an indicator of tumor growth somewhere. But the tumor growth is being kept slow by the drugs that I'm on. In time it will be detectable on scan, but so far it's still below the detectable limits. I suspect that we will stay the course and as long as the CEA is steadily increasing then my next scan will be in two months. Until then I get to live my life in uneasy peace. Of course if the doctor has anything different to say on Monday I will post it here.

Here's the PET scan report:

Today's CEA and the Suspected Plan

My CEA today is 2.1, still trending upwards. I see the doctor on Monday for my every-other-week Avastin infusion. He was planning on doing this infusion and then two more before repeating my PET scan but I suspect that since it's been going up since the last scan, and that it's now above 2.0, the scan will be after this infusion. I expect the next PET scan will be done around April 5th, give or take a day.

The Latest

As those of you who see my posts on Facebook know, my CEA was 1.6 last Friday. It makes me nervous when it goes up. The next one will be interesting. I'll have that one done on Thursday March 1st because I don't think I can get to the lab to have it done on Friday.

Part of my treatment every two weeks includes infusions of Avastin through my mediport. One of the side effects of Avastin therapy can be high blood pressure. My baseline pressure is actually pretty low, lower than normal. But, it seems as if it's now getting high enough to cause some concern. My primary care doctor told me to get a blood pressure monitor and keep track of it at home. And yesterday when I went for my Avastin the pressure was high enough that I was wondering if they'd still do the infusion. It was given to me but I need to keep a very close eye on it. I don't know if the Avastin would be stopped if the pressure continues to build or if blood pressure medications would do the trick and control it. I'll learn more in the next few weeks, I suspect. Yesterday (since it was a holiday) the oncologist was off so I didn't get a chance to discuss this with him, but I will do so in due time.

PET Scan 2/3/2012

I think I'll let it speak for itself:

:-)