PET Scan Plan

Quick update: I went in for my 12th Avastin infusion yesterday. During my appointment with the oncologist we discussed our plan. Dr. Dormady said that the CEA for me is a good indicator of disease progression and while it's low like it is right now he doesn't see a need to do a scan as frequently as every two months. He did say that he wouldn't go over three months. Anyway, we'll keep watching the CEA and as long as it behaves we are pushing the PET scan out another month and will do it after the 14th Avastin infusion, which is about a month from now.

Early Christmas Present

What a great early Christmas present! I had my CEA drawn yesterday, but due to a problem with the machine it wasn't run until today. I just got the fax and the CEA is 1.0. This is the lowest my CEA has been since 1/24/2011... almost a year ago. I am very happy to see this and will be eagerly waiting for the next one to see if it drops below 1.0. Cross your fingers for me!

My next infusion will be next Tuesday, the 27th. I will also be taking the pill chemotherapy all week that I've been taking since July (every other week). Then my next PET scan should be the week after. With the CEA this low I don't expect any nasty surprises.

CEA

Today I had my bi-weekly blood tests done. The CEA today is 1.3. That's down a tic from 1.4 two weeks ago. Which was up a tic from 1.3 two weeks before that. Which was down from 1.5 two weeks before that. So, maybe I'll just stay in this small range and bounce up and down. I guess I'm happy with that as long as my scans stay clear. Of course, I'd love to see it drop below 1.0. Will I be happy then? Well, it's all relative. Just like those "5 more pounds" I will then look for it to drop to, maybe, 0.5. Let's see what happens if and when I get to 1.0.

My oncologist told me that we will just keep doing what we are doing pretty much indefinitely. Maybe if my CEA drops and stays down and my scans are clear for 6 months then perhaps he may consider lengthening the time between infusions. However, though it is a minor inconvenience (especially when we are kept waiting in the waiting room for an hour), I don't mind the treatment I'm getting now as there are no side effects that I notice.

He will order a PET scan after my 12th infusion (it's after every fourth infusion) which means I'll get my next scan the week of January 2nd, most likely.

PET Scan from 11/10/2011

Yesterday I had another PET scan done. For now these are being done a two-month intervals. I have been worried about this one because my CEA has been going up since September. I also had my CEA drawn today and expect that result later today.

I'm happy to report that this PET scan appears to be clear. There is still a "soft tissue density" that was seen last June but it has decreased in size and I think it's under their threshold to call it a definite tumor. I'm sure everyone will be keeping an eye on this one.

I go to see the doctor on Monday. At that time I'll learn if the chemotherapy schedule will be modified or will stay the same. That may depend, in part, on this CEA level. {Update: I just got my CEA result, and it's 1.3, which is down from the previous 1.5 Now, that's better!!}

Here is the PET scan report:

CEA Up a Little More

Last week my CEA was run and I'm disappointed to report that it's up a little more. It came in at 1.5, up from 1.3 the week before. For some people, little movements like this are meaningless and some doctors would downplay its significance because these things can fluctuate. However, mine has never fluctuated, and every time there was a rise we would find something in an upcoming scan. So, naturally this one has me a little worried and my oncologist isn't disregarding its significance either.

I have a PET scan scheduled for next Thursday, a week from today. With the CEA still low this PET scan may not be the one to show any growth. But we'll find out. I'll post the result when I get it (probably next Friday) and then I'll see the doctor the following Monday to discuss the ongoing plan.

Last Friday's CEA

I had my CEA drawn last Friday... sorry I haven't shared it with you yet.

It was 1.3.

I was disappointed. After the steady decline from 5.7 on July 7th I was anticipating finally getting back under 1.0 (the previous one was 1.1) and was knocked back a bit when I saw that it was actually up some. Of course, it may go back down for the next test, in two weeks.  One thing I can say: I was subject to some stress related to some family stuff back in Texas and perhaps that accounts for the uptick. Stress is bad when you are fighting cancer. It actually causes an inflammatory environment in the body that makes cancer cells happy. So, since I have walked away from the situation that was stressful hopefully the CEA will start to decline again.

We will do another round of chemotherapy in a couple of weeks and then do another PET scan.

The Plan

When I started down this chemotherapy road in July I didn't ask the doctor what the overall plan was. That's uncharacteristic of me. I guess since I was told that I'm now considered "incurable" I didn't want to hear the answer. Perhaps I thought that I'd be on non-stop chemotherapy of one kind or another until it stops working altogether. Or perhaps I assumed that he didn't have a plan and would have to make it up as he went along. Anyway, I didn't ask. Well, when this most recent PET scan was done and the radiologist again declared that I'm in remission I thought maybe I should ask the oncologist what his plan is. I learned he had one all along, or at least the beginnings of one.

He said that what he was originally planning on doing was four rounds of chemo, followed by a scan. I suspect he would have made adjustments to the drugs depending on how effective they appear to be. Then he would do four more rounds of chemo and then another scan. Perhaps he would have kept repeating that scenario until it didn't make any sense anymore. What he didn't expect was that the scan would show that the tumors are no longer visible. He told me that just in case the chemotherapy has knocked them down to just below the detectable limits of the scan he doesn't want to stop the treatments just yet. If they are still there then it's better to kick them while they are down rather than let them gather strength and rebound. So, he wants me to do four more rounds of chemotherapy since that scan was done and then he will re-scan me as planned, but this time we won't be shocked when we don't see anything. And that's a good thing. I think originally he would have had me do at least twelve rounds of chemo but he may have me stop at eight and then keep an eye on things as usual. I've already done round number five so I'll do three more and then see how things look. At that time we may stop the drugs and start them again if and when it becomes necessary to do so. They aren't causing me any side effects so I don't mind taking them but I'm sure he won't want me to take them unnecessarily since they probably are having some sort of toxic effect on my body and also he doesn't want to encourage the tumor cells to develop a resistance to something that is clearly working so well at the moment.

I'm just thankful that at the moment it's all working so well and I am going to be left relatively healthy and strong for a while longer.

PET Scan Results From 9/14/2011

YAY!!! Join me while I do a happy dance!! Focus on the "Impression" on page 2.

1.9 CEA

Yesterday I had my bi-weekly CEA blood test and it has declined further, to 1.9. This is great news. "Normal" levels are anything below 3.0 but my baseline CEA is <0.5, essentially undetectable. My CEA had declined to 0.7 this past January and then it started its climb up and I knew that it was just a matter of time before a scan detected new activity. It was 5.7 on July 7th, before I started this "maintenance" chemotherapy. I'm delighted to watch it decline.

The plan is to do another round of chemo next week and then do another scan shortly afterward to see what's going on. I've also been reading a fascinating book called Anticancer, written by a physician who himself battled brain cancer for 20 years (I just learned from that website that he died last month). So far I have learned that Japanese green tea has extraordinary cancer-fighting properties and so today David and I bought some high-quality green tea for me to drink three times a day. Also I will be learning to like salmon since the omega-3s that it provides fights cancer. Additionally I will try to switch to grass-fed beef and products from grass-fed cattle, organic eggs high in omega-3, and organic chicken. If you'd like to know why then read the book! It is truly eye-opening.

My CEA Level Has Declined

The CEA is a blood test used to monitor the treatment of cancer patients, especially those with colon cancer. My CEA, though it does not travel very far, tells a true story. I was constantly told by my previous oncologist that it was always normal and so I didn't pay any attention to it for the first couple of years. It was only after my cancer came back last year (June 2010) that I requested all of the CEA test results. I then studied them looking for a trend. Yes, often it was in the "normal range" but it would trend upwards when my cancer was back and it was undetectable when it was not. This test is what gave me a clue this past spring that my cancer was returning. In March it started to rise again and before my chemotherapy started two weeks ago it was 5.7. I had it re-tested last Friday and already it's on its way down. It is 5.2. This is great news to me and my oncologist. This tells us that the gentle drug therapy that we have chosen seems to be working.

Dr. Dormady said today that I will do a total of four treatments and then do another scan to see how things look. Today I started treatment number two. If it's like the last time I won't even feel it, it's that gentle. Now, this is the way to go!!

Chemotherapy Has Started

This week I started my "maintenance" chemotherapy. The goal is to keep things stable, just as they are, with no tumors growing or spreading... if they shrink or disappear then bonus! I am on a couple of chemotherapy drugs with very little side effects. The Xeloda may cause the palms of my hands and the soles of my feet to turn pink and peel or develop fissures. The way to try to prevent that is to use a nice, thick lotion several times a day. Finally, I got a lotion foot rub from David yesterday!! It may cause diarrhea but so far that hasn't happened. I tend to constipate anyway (I know... TMI...) which is why I take a fiber supplement every day. But anyway, perhaps that tendency will help prevent diarrhea. Xeloda works by trying to kill the tumor cells directly. I take three pills twice a day, for seven days. Then skip a week. It's one week on, one week off.

I'm also taking Avastin. This drug works in a different manner than Xeloda. It works by preventing the tumor cell from growing its own blood supply. Tumor cells are very greedy and will create a network of blood vessels all for themselves. If they can't do this then they may starve and die. There are really no side effects from this drug. It can prevent healing if I have a large trauma or surgery but that's not the case for me. Avastin is given via infusion every other week, the same week that I take the Xeloda.

I have waited so long to get back into working out and I'm not letting cancer or chemotherapy stop me. I started a Boot Camp workout last week and continued this week with it because I feel just fine. I'm so relieved. I was afraid the pills would upset my stomach or drain my energy but it's not doing that. If I have to do this for the rest of my life (assuming the tumors respond to this therapy) then I can do it.

We did meet with a doctor up at UCSF yesterday. She said that the current treatment makes sense and if it doesn't work then other drugs can be tried. Same stuff we've been told. She explained that CyberKnife isn't considered at this time because it involves radiation and there's nothing to be gained by zapping these tumors since they aren't threatening anything and they may respond to the drugs. If there's a threat then the CyberKnife may make more sense but at this time it would do more harm than good. She is going to refer us to a doctor that may get us in a clinical trial if that route ever makes sense for us. It would only be tried if the current treatment fails.

I think that's all... if I missed anything I'll make another post. :-)

Another MD Perspective

Yesterday morning we met with Dr. Dormady, my current oncologist. We basically decided to do 3 months of a relatively mild chemotherapy... nothing like I was doing before. I will be getting Avastin and Xeloda. I have had these drugs before but in combination with heavy-hitter drugs. I shouldn't experience the side effects from these two like I had before. I'm told I shouldn't expect nausea, fatigue, neuropathy. I'll know more when we get started, which is planned for Monday June 18th. After three months we'll do another set of scans to see what effect the drugs are having on these tumors. Also we'll continue to get CEA blood tests.

Last week I sent an email to my previous oncologist (Dr. Chen) to update her on my happenings and ask her how she would be handling this. She called me and we spoke for a while. I told her during that conversation that the doctor who ordered the CT scan up at Stanford hasn't gone over the CT findings with me and does not intend to do so. She asked me to get her the newest CT scan report and also to bring her the CD of CT scan images from Stanford. Yesterday when she left work she stopped by one of the local imaging centers (where I had my last PET scan done) and reviewed both sets of images with a radiologist there. After she called me again last night (from her home, mind you) I felt much better. Here's what she had to say:

She said I have two very small tumors currently. They are both on my left side. One is in the same area of my surgery last year. One is in my "iliac chain" which I believe is a chain of lymph nodes in the pelvic region. The one that is in my abdominal area is the larger one of the two but is very small. The one in my pelvic region is smaller still. As a matter of fact, it's so small that it's easy to miss on the CT scan. Only when they compare the PET scan and the CT scan do they realize that it's there. Dr. Chen feels like these have been there a while and are growing very slowly and right now they aren't threatening anything. When I read the scan reports they also mention other suspicious lesions that need to be watched but they aren't calling them tumors yet.

After she and I spoke I felt much better about things.

We are still planning to confer with the docs at UCSF. I am expecting a phone call today to schedule that appointment. I honestly expect to hear the same stuff but I owe it to myself to hear it anyway and confirm that the plan is a good one.

Is Dire in the Eye of the Beholder?

Over the past three years, and especially now, I have gotten a lot of support from people all over for what I'm going through. I have had some wonderful responses... and some that left me scratching my head and thinking for days. I'd like to pass on to you a comment that I got a week ago. It made me think and wonder for most of the week. I won't identify who said this, nor even the gender of the person.

So, here's what he/she said upon seeing me for the first time since the latest findings: "You made it seem so dire!"

So, how am I supposed to respond to that?

Here's some of what flashed through my head: "Do people think I'm exaggerating?" "Do people think I am making things up?" Should I try to look more gaunt so I'm more believable?" "Is my situation not as serious as I think it is?"

Up to that point, all of my communication with this person (and most of my friends and family) have been via Facebook and this blog. And it's all pretty much just factual. All we can do at this point is pass on what the doctors have told us and how I'm feeling. And, right now I'm feeling fine. I wouldn't know that something is happening if it weren't for the scans. At the same time I look normal. But the truth is, I've always looked fine. I've never looked sick. Sure, there were times during chemotherapy rounds that I looked tired but my appearance has always told a different story than my medical situation would suggest.

I don't want to suggest that I'm about to die. I may hang around pestering everyone for years to come. As of yet I haven't been given a "time limit" to live, so that's a good thing. We are trying to create a stand-off which will buy me some time until better, more effective treatments are developed.

I guess in closing the reason I'm writing this is that the comment left me baffled. I didn't know how to respond to that. I didn't know exactly what was being said. I'm just getting this off my chest; I know I shouldn't feel like I have to explain why I don't look sickly. I know that my inside and my outward appearance don't match and I know that can confuse some people. I'm also not looking for a bunch of reassuring comments. I just want to be thankful that my appearance holds up well under adverse conditions. I guess it gives new meaning to the phrase: "Don't judge a book by its cover."

Time to Call in the Big Guns

A couple of days ago I had an appointment with the colorectal surgeon who found the initial tumor in 2008. During my appointment with him I described to him my frustrations with Stanford. He said that they are very difficult to communicate with and that's why he no longer refers patients to them. Instead, he refers patients to UCSF. He gave me the name of a top cancer specialist up there and so I called them to self-refer. Luckily I am fastidious about collecting and filing away every test and lab report, every surgical report, everything and I had a pretty complete file here already. David helped me to copy and label 24 CDs and DVDs which contain the images of all of the scans that I've had done. I gathered all of the papers and headed to Kinko's where I copied 199 pages of medical history. I sent that packet along with the 24 discs to UCSF and the entire package will arrive there by noon tomorrow. Probably next week I'll hear back from the New Patient Coordinator (it takes 2-3 days to review all of the information) and then I hope to get on the schedule. I hope to be included in their tumor board.

I don't think that my treating oncologist feels like any of this is necessary but he's indulging me. Who knows, it just may save my life, and if it's an effort that I want to make then it's my choice to do so. Luckily we have amazing insurance. For the rest of the year, medical care won't cost me a  thing.

CT Scan from 6/20/2011

Commentary from her Other Half

It’s me. Laurie’s other half chiming in. I wanted to pass along an important perspective. It’s kind of a weirdly positive element. All too often we hear that someone has a certain amount of time to live. No one has even hinted at that. Everyone sees Laurie and knows how strong she is. We are truly into a management mode. I expect Laurie’s going to be around for quite some time.

Dr. Fisher made the allegory to treating diabetes. Granted the medications are typically a lot more intense for cancer, but there are some fairly mild treatments too. The challenge that we have is to find the right drug or mix of drugs that stop growth, reduce their size or completely eliminate the tumors while at the same time not making Laurie uncomfortable. If we halt the growth then down the road we can consider surgery to remove the existing tumors. If we are successful in reducing or eliminating them, even better. There are some drugs we already know to avoid (the cure is worse than the disease).

If we get into a holding pattern then we are in a good place for future developments. Dr. Fisher was just at a national conference for cancer and colon cancer treatment. While there is nothing imminent, there are studies going on and one is at Stanford. I think it’s too soon to know much, but the first stage is wrapping up and there may be opportunities in the second phase (we know very little and it’s too soon to know if Laurie’s even a candidate).

So, while we’re disappointed to officially hear that we’re now in management instead of cure mode, we aren’t in a dire mode. We just need to manage it and enjoy ourselves. We’ve got two wonderfully attentive puppies and a flourishing garden to enjoy.

Our Meeting with Stanford Oncologist & Surgeon

Dave and I went up to Stanford today to meet with an oncologist (we conferred with him last year) and a GI surgeon. The oncologist explained to us that with the first tumor in February 2008, it was removed and aggressive chemotherapy was given in hopes of a cure. Also when I had an isolated occurrence in my liver, which was removed in January 2009, there was still a chance of a cure. And even last year, if the surgeon was right and the tumor was a left-behind piece from 2008 there was a chance of a cure when it was removed. However, with 2-4 tumors showing up now, and all in different locations, it looks like that's no longer an option. The goal now will be to keep them from growing and spreading, sort of maintaining my relative good health and well-being until better treatments are developed. So, it looks like the most likely scenario will be to give me some "gentle" chemotherapy and watch the tumors... see how they respond. If the chemo doesn't work then we try another combination. But I won't go for all-out-aggressive chemotherapy because there's no longer a chance for a cure. With that in mind, I don't have any plan to spend the rest of my life miserable from chemotherapy drugs. Right now I feel perfectly fine and if we can give me some infrequent or lower-dose drugs to keep things as they are (or even make them go away), but still allow me to go about my life as I do now (as best I can) then I'm OK with that.

The surgeon would like for me to do a CT scan which will give better imaging of the tumors and show where they are exactly in relation to other organs. After he reviews that scan then he will communicate with me about his recommendations. But I fully expect him to recommend holding off surgery for now. Heck, if we leave them in place then we have something to gauge effectiveness of chemotherapy drugs. I will ask about possible Cyberknife surgery in the future if a tumor starts to threaten other vital organs.

So, soon I will have a CT scan, then will hear from the surgeon. I will also await the results of the targeted assay. Then I will talk with my treating oncologist and we will come up with a maintenance plan that I can live with. These tumors are so small and I have no symptoms. There really is no rush at the moment, we have some time to figure things out.

Oncologist Appointment Yesterday

David and I had a meeting with my oncologist yesterday. There's really not much yet to report. He doesn't think that a surgeon will recommend surgery, but we will be meeting with one on Thursday so we'll know more about that then.I can kind of understand why he would say that. If there are 2-4 more tumors that we can visualize right now then how many more are there that we can't see yet? At some time, they will stop trying to pick them out as they show up. He also said that right now the additional tumors are so small and they aren't threatening any organs so we have time to figure things out.

In addition to meeting with a surgeon on Thursday we will also meet with the top oncologist at Stanford. Between the two guys (and our oncologist) we should get a plan going soonish. I hope to be discussed at their next GI Tumor Board (next Wednesday) and then we can find out what the collective opinion is. We also haven't ruled out conferring with MD Anderson Cancer Center in Houston or Sloan-Kettering Cancer Center in New York. If nothing else, perhaps one of those two highly regarded cancer centers will have a clinical trial that I can participate in. Also, we are still waiting for the results of the "targeted treatment" assay. This may identify some specific treatment drugs that my particular cancer cells may respond to.

I'll post updates as we learn more.

Thank You All

I would like to send out a heartfelt "Thank You" to all of my friends and family who have sent kind words of encouragement. I have received numerous emails, comments here, and notes on Facebook. I appreciate each and every one. And knowing that I have such an army of support behind me means a lot. I know that it means a lot to David too.

PET Scan Report

Well, I got my report. I actually got it yesterday but have been letting it ferment for a while. Basically it says that I have two definite tumors, one in my left mid-abdomen and one in a lymph node in my left pelvic area. Also there are two more "soft tissue densities" that cannot be excluded. One of these is near my right kidney and one of these is in my "left mid-pericolic gutter", whatever that means. I didn't know I had a gutter. So, as it turns out, I have somewhere between 2-4 things to deal with this time. I hope the surgeons can find a way to get to all of them and have a good look around while they are in there.

The radiologist always looks back to the previous scans to compare findings and the two definite tumors, looking back, were probably on the last scan in April but were very hard to see because of their small size and their lack of brightness. For a PET scan I have to lay off of the carbs the entire day before and go in to the scan fasting. They then shoot me up with radioactive glucose. Tumor cells are greedy little buggers so they really suck up the glucose. The scan looks for this metabolic activity and it shows up as bright spots on the scan. Well, these two tumors weren't so greedy in April (they were just babies) but now this time they were bigger and brighter.

It was in March that my CEA started to rise so I'm not surprised to hear that these spots were actually there in April, but were under the threshold to call malignant. I'm also not surprised to hear that they found them this time. But I am surprised to hear that there are possibly four things to worry about now.

There were some people (including my oncologist) that tried to downplay the significance of my rising CEA. Having to try to convince them didn't help and after this perhaps they'll just listen and trust me. I'm glad that I talked my doctor into moving the PET scan up. As fast as this thing moves who knows what they would have found a month from now.

Here is my report. I've removed all identifying information. One fun thing to note is the comment about my gray matter in the "HEAD/NECK" area. I guess I had a lot on my mind!

Inaugural Post

Howdy folks.

Welcome to my new, simple blog. My previous blog was so unfocused and I when I wasn't having any cancer news I could rarely think of anything worth posting about. I felt that I had made a promise that I couldn't keep. So, I am starting over with a new one and this one will only be about what's going on with me cancer-wise. Here's where I'll post updates about blood tests, scans, surgeries, and treatments. We have found that this is the easiest way to get information to everyone who wants to be kept updated.

So, let's get started, shall we?

Since March my CEA level has been on a steady march up. The CEA is a tumor marker that is monitored via blood tests. Well, in January it was 0.7. But then in March it jumped to 1.5. After that it kept climbing: 1.6, 1.9, 2.2, 3.8. At this point I convinced the oncologist to move my PET scan (scheduled for July 6th) up. So, today, June 8th, I had a PET scan. And here we are, almost exactly a year from finding the last tumor (it was June 9th last year) and it seems I have another one. I am not supposed to know this yet, but I do. I'll know officially in a couple of days, and there's still room for a retraction in case the person who told me is wrong. It's official once the radiologist reads the scans and writes his report. But I expect it to say that I have a new tumor, and it's in the same area as the last one.

What do we do? I have a call in to the doctor up at Stanford, as I intend to involve him and the Stanford GI Tumor Board again. I will find out if less-invasive robotic surgery is possible for me. My oncologist is supposed to have already sent some of my tumor cells away (from the last surgery) to find out if there's a targeted way to treat it. I will no doubt have surgery again. I will resist chemotherapy if possible. And I'll heal again and wait for the next time.