Well, it's been about 5 months since my last update, and this one is long overdue.
My last post talked about the rounds of Xeloda I had, and how my tumor markers went down (from 8.2 to 5.0). And that my CT scan done on June 26th, was stable. Well, since then, things have changed.
On Sept 11, I had another blood test and my tumor markers (CEA) went up from 5.0 in June to 10.1. My CA 19-9 went from went from 79 to 96. Just to make sure this wasn't some fluke, we had them taken again on Sept 22. CEA was 10.0 and CA 19-9 went up even higher to 106. It wasn't a fluke.
After consulting with my oncologist, we decided to get another CT scan, which I finally had on Oct 31st. That also did not have much good news. Well, it wasn't horrible news, but it wasn't great either. On previous scans, three spots showed up of possible tumor recurrence. On this CT scan, two of those were stable, but one of them doubled in size. It is still relatively small, and thankfully slow growing. Oh, and I have a hernia.
So, with reports and films in hand, we headed down to Baltimore, MD to consult with Dr. Esquival (at St. Agnes hospital), who is one of the specialists for this disease. For those of you who don't know, Dr. Esquival assisted Dr. Sugarbaker when I had my surgery at Washington Hospital Center in DC about 4 and a half years ago. We also met with him in Jan of this year, so he is fairly familiar with my situation.
After some quick poking and prodding, he told us first that he was surprised that my hernia was caused by my bladder. Usually it is the small intestines that cause hernias, but I just had to be different. He said as long as it wasn't causing me any problems, he saw no reason to go in and operate.
The next thing he told us is that even though my original pathology report showed aggressive signet ring cells, and that I had 3 positive lymph nodes, which put me in the "high-grade" category, he was now placing me in the "low-grade" category.
He also told us that looking at the tumor markers and the CT scan, he wasn't quite sure what was going on. He said that there was a lymph node near where the growing tumor was and that he wanted to find out if there was anything else going on. He said I should get a PET scan to find out. If the lymph node "lights up" on the PET scan, he is going to recommend a complete round of chemo. that is 6 cycles of Oxiliplatin and Xeloda (or Xelox protocol). This is what I had originally in Dec 03 to Jun 04, with an operation in between to break it up. And I only had 4 cycles. Two before the surgery and two after. It certainly wasn't fun, and my hope is the lymph node DOES NOT "light up".
If the PET scan is clean, then the doctor said that we just continue to watch and wait. As long as there are no symptoms, there is no reason to go and operate and possibly decrease my quality of life.
So, that is where we stand now. A PET scan with possible chemo, or not. And more watching and waiting. For now, I have staved off another surgery, but barring a miracle, one will most likely be in my future at some point. The good news is that where the tumor is, the doctor said there is absolutely no chance of having an ostomy. And with all of the advancements being made, there is always a chance I will continue to live with this for a long time. And that is our prayer.
Thank you all for your love, concern, prayers, etc. They are more appreciated than you can imagine.
Kevin
Sunday, November 09, 2008
Friday, June 27, 2008
Update Long Overdue
OK, OK. I know it's been way too long since I have updated my blog, and some of you were probably wondering if I was still alive. You can rest assured I am. A lot has happened in the last few months, so this might be a bit long. So let's get started.
In March of this year, we found that my tumor markers continued to rise, and the CT scans showed some tumor growth, albeit slow growing. So I decided to follow the advice of a PMP specialist, and my oncologist to go back on chemo. The chemo I took was called Xeloda, which is taken orally. During the treatments, I took it for 2 weeks on, and had one week off. The main side effect was fatigue. The last few days, I had little to no energy and spent most of the day on the couch watching TV. I decided to start taking it on March 24th, so that the "off" week of the third round would be during our last week of vacation in Israel.
After two rounds, I had a set of tumor markers taken (April 28th), but we didn't get the results until April 30th.The day of the Accident.
For those of you who hadn't heard about that, here's the story. On the morning of April 30th, I was on my way to West Point Military Academy on my Harley Davidson, where I was to meet my boss, and where we were going to get a briefing on how they handle some of the Business Continuity testing. I have a friend who works there, so we were looking forward to seeing how the military would handle emergency situations, and even get a tour of WPMA. It was a few days after I stopped taking chemo, so I wasn't feeling too bad, but I have to admit, I wasn't quite 100%.
When I was about 15 miles away, I came to a "circle" or "round about" for my Aussie and English friends, when I started slowing down. I saw a car in front of me, and kept thinking that it was going to go into the circle. That was my first mistake. When riding a motorcyle, you should always assume the car in front of you is going to do something stupid. By the time I realized the car was stopped, and wasn't going to enter the traffic circle, I was too close to it to stop safely. I hit the brakes, slid, and finally was dumped on the left side. When everything had stopped, I was on the ground with the bike pinning my foot so I couldn't get up. I also realized I wasn't able to use my left arm.
Eventually someone came by, lifted the bike up and helped me up. I went and sat on a traffic gaurd at the side of the road and waited for an ambulance. I realized that I had messed up my arm, but didn't know to what extent. An ambulance took me to a nearby ER, and a state trooper assured me my bike would be towed to a safe location. On the way to the ER I called my boss, who was already at West Point and told him what happened. he quickly met me at the ER.
I eventually found that I had broken and dislocated my elbow and broke my little finger. the put the bone back in place, but because it was broken, it still hurt like the dickens. They put me in a splint, and Roni, who had rented a car and came to get me, took me home. And for those wondering, yes she was upset and also glad that it wasn't any worse.
The next day we went to see an ortapedic surgeon who said he would be able to operate the next day (Friday), which was a blessing because he usually only operates on Monday. So on Friday, we went to Mt. Sinai where he replaced the cap of my radial bone with a titanium cap, and put two pins in my little finger and I went home again with my entire arm in a splint that went from my shoulder to my hand. I had that splint on for two weeks.
The bad part of all of this (besides the broken bones and smashed up bike) was that there was a good chance I might not have been able to go to Israel, and the doctor wouldn't know for sure until a day or two before we were to leave.
Now for the good thing that happened during the day of the accident. We got a call from my oncologist who got the results back from the tumor marker test. After two rounds of chemo, my markers had started to go down. My CEA went from 8.2 to 5.9. Still slightly high, but the drop was significant.
A couple of weeks after the accident, I had the splint removed, and the doctor replaced it with some guaze and an ace bandage for the elbow. He also put a more permanent cast on my hand to keep my finger in place. And although he was slightly hesitant, he did give me the OK to go to Israel for our vacation. What a relief. So the next day we were off to Israel, with my arm in a sling, and a cast on my hand. A week later I was able to take the bandage off my elbow, and even started going without the cast so I could start moving the arm.
We had a great time in Israel, despite my having to take chemo during the first few days of the trip.
Shortly after our return, the hand cast came off, and I started physical therapy to get everything working again. I have been at physical therapy for about 4 weeks now, and have much more use of my arm than I did just a couple of weeks ago. I am expecting to have full use of my arm, but it might take another 3 or 4 weeks. My arm, wrist and fingers still hurt, but that is to be expected.
As for the bike, I have not seen it, but it was towed to a Harley Davidson dealership close to where the accident happened, and it is currently being repaired. Since I wasn't going that fast when the accident happened, I believe most of the damage was cosmetic in nature, and fortunately, the insurance it paying for the majority of the repairs. All I have to do is pay the deductible. I am hoping in another month or so, I will be able to ride it again.
Which brings us to the present.
Two weeks ago, I had another round of tumor markers taken, which was after my 4th round of chemo. We got more good news when the results came back and the CEA had dropped from 5.9 to 5.0. The normal range is 0 - 2.5, but 5 is not horrible, and much better than 8.2. Also the fact that it had dropped that much showed that the chemo was doing its job. My CA 19-9 also dropped from 82 to 79. That marker is still high, but again, the fact that it did not go up, but down was a good sign.
Yesterday I had a CT scan, and in the afternoon we got even more good news. While the scan showed that something was still there, the best part of the report is the line that said, "Comparison was made with a previous examination of December 14th, 2007. There has been no significant interval change." So, I'm not completely out of the woods, but at least it looks like things are under control, and I can take a break from chemo. We will be meeting with my oncologist next week to go over the scan in more detail, but he said he was happy with the results, and that is something that Roni and I are very thankful for.
So, in the last couple of months, we have had some bad things happen, and some good things happen. One thing we have learned is, that's all part of life.
We would like to continue to thank you all for your support and your prayers during this time in our lives. Your love, kindness and caring are all part of what keeps us going and gives me and Roni the courgae to keep fighting.
We are now looking foward to family reunion with my family which will start July 6th, in Wisconsin Dells, WI. My family will be driving from Oregon, while Roni and I will be renting a car and driving from NYC. I'll let you all know how that goes in my next post.
For now, even recovering from a broken elbow and finger, and from the effects of chemo, I feel very blessed to have a beautiful, wonderful wife and all of you in our lives.
Thank you all again.
Kevin
In March of this year, we found that my tumor markers continued to rise, and the CT scans showed some tumor growth, albeit slow growing. So I decided to follow the advice of a PMP specialist, and my oncologist to go back on chemo. The chemo I took was called Xeloda, which is taken orally. During the treatments, I took it for 2 weeks on, and had one week off. The main side effect was fatigue. The last few days, I had little to no energy and spent most of the day on the couch watching TV. I decided to start taking it on March 24th, so that the "off" week of the third round would be during our last week of vacation in Israel.
After two rounds, I had a set of tumor markers taken (April 28th), but we didn't get the results until April 30th.The day of the Accident.
For those of you who hadn't heard about that, here's the story. On the morning of April 30th, I was on my way to West Point Military Academy on my Harley Davidson, where I was to meet my boss, and where we were going to get a briefing on how they handle some of the Business Continuity testing. I have a friend who works there, so we were looking forward to seeing how the military would handle emergency situations, and even get a tour of WPMA. It was a few days after I stopped taking chemo, so I wasn't feeling too bad, but I have to admit, I wasn't quite 100%.
When I was about 15 miles away, I came to a "circle" or "round about" for my Aussie and English friends, when I started slowing down. I saw a car in front of me, and kept thinking that it was going to go into the circle. That was my first mistake. When riding a motorcyle, you should always assume the car in front of you is going to do something stupid. By the time I realized the car was stopped, and wasn't going to enter the traffic circle, I was too close to it to stop safely. I hit the brakes, slid, and finally was dumped on the left side. When everything had stopped, I was on the ground with the bike pinning my foot so I couldn't get up. I also realized I wasn't able to use my left arm.
Eventually someone came by, lifted the bike up and helped me up. I went and sat on a traffic gaurd at the side of the road and waited for an ambulance. I realized that I had messed up my arm, but didn't know to what extent. An ambulance took me to a nearby ER, and a state trooper assured me my bike would be towed to a safe location. On the way to the ER I called my boss, who was already at West Point and told him what happened. he quickly met me at the ER.
I eventually found that I had broken and dislocated my elbow and broke my little finger. the put the bone back in place, but because it was broken, it still hurt like the dickens. They put me in a splint, and Roni, who had rented a car and came to get me, took me home. And for those wondering, yes she was upset and also glad that it wasn't any worse.
The next day we went to see an ortapedic surgeon who said he would be able to operate the next day (Friday), which was a blessing because he usually only operates on Monday. So on Friday, we went to Mt. Sinai where he replaced the cap of my radial bone with a titanium cap, and put two pins in my little finger and I went home again with my entire arm in a splint that went from my shoulder to my hand. I had that splint on for two weeks.
The bad part of all of this (besides the broken bones and smashed up bike) was that there was a good chance I might not have been able to go to Israel, and the doctor wouldn't know for sure until a day or two before we were to leave.
Now for the good thing that happened during the day of the accident. We got a call from my oncologist who got the results back from the tumor marker test. After two rounds of chemo, my markers had started to go down. My CEA went from 8.2 to 5.9. Still slightly high, but the drop was significant.
A couple of weeks after the accident, I had the splint removed, and the doctor replaced it with some guaze and an ace bandage for the elbow. He also put a more permanent cast on my hand to keep my finger in place. And although he was slightly hesitant, he did give me the OK to go to Israel for our vacation. What a relief. So the next day we were off to Israel, with my arm in a sling, and a cast on my hand. A week later I was able to take the bandage off my elbow, and even started going without the cast so I could start moving the arm.
We had a great time in Israel, despite my having to take chemo during the first few days of the trip.
Shortly after our return, the hand cast came off, and I started physical therapy to get everything working again. I have been at physical therapy for about 4 weeks now, and have much more use of my arm than I did just a couple of weeks ago. I am expecting to have full use of my arm, but it might take another 3 or 4 weeks. My arm, wrist and fingers still hurt, but that is to be expected.
As for the bike, I have not seen it, but it was towed to a Harley Davidson dealership close to where the accident happened, and it is currently being repaired. Since I wasn't going that fast when the accident happened, I believe most of the damage was cosmetic in nature, and fortunately, the insurance it paying for the majority of the repairs. All I have to do is pay the deductible. I am hoping in another month or so, I will be able to ride it again.
Which brings us to the present.
Two weeks ago, I had another round of tumor markers taken, which was after my 4th round of chemo. We got more good news when the results came back and the CEA had dropped from 5.9 to 5.0. The normal range is 0 - 2.5, but 5 is not horrible, and much better than 8.2. Also the fact that it had dropped that much showed that the chemo was doing its job. My CA 19-9 also dropped from 82 to 79. That marker is still high, but again, the fact that it did not go up, but down was a good sign.
Yesterday I had a CT scan, and in the afternoon we got even more good news. While the scan showed that something was still there, the best part of the report is the line that said, "Comparison was made with a previous examination of December 14th, 2007. There has been no significant interval change." So, I'm not completely out of the woods, but at least it looks like things are under control, and I can take a break from chemo. We will be meeting with my oncologist next week to go over the scan in more detail, but he said he was happy with the results, and that is something that Roni and I are very thankful for.
So, in the last couple of months, we have had some bad things happen, and some good things happen. One thing we have learned is, that's all part of life.
We would like to continue to thank you all for your support and your prayers during this time in our lives. Your love, kindness and caring are all part of what keeps us going and gives me and Roni the courgae to keep fighting.
We are now looking foward to family reunion with my family which will start July 6th, in Wisconsin Dells, WI. My family will be driving from Oregon, while Roni and I will be renting a car and driving from NYC. I'll let you all know how that goes in my next post.
For now, even recovering from a broken elbow and finger, and from the effects of chemo, I feel very blessed to have a beautiful, wonderful wife and all of you in our lives.
Thank you all again.
Kevin
Wednesday, March 12, 2008
Chemo - Part Deux
Last week I had a new round of tumor markers taken and the news wasn't good. Both markers continue to rise. My CEA went up from 6.6 to 8.2 (range is between 0 - 2.5) and the CA 19-9 went up from 76 to 82 (range is between 0 - 35).
After my consultations, and CT scans, it still seems that the tumor is slow growing, but something is definitely there. After consulting with my oncologist, and using the advice from Dr. Loggie, I will be starting a new round of chemo.
The good thing is, I will be taking Xeloda, which is a an oral form of 5FU. I had taken this before and it wasn't too harsh on my system. The bad thing is, it's still chemo, and it still means the cancer is back. And in the words of Bart Simpson, "I didn't think it was physically possible, but that both blows and sucks."
All prayers for this next round are greatly appreciated.
Kevin
Tuesday, January 08, 2008
2nd Opinion
On Monday, Jan 7th, Roni and I drove down to Baltimore, MD to meet with Dr. Esquival for a second opinion. We were supposed to meet with Dr. Sugarbaker in the morning, then Dr. Esquivel in the afternoon, but it turned out our appointment with Dr. Sugarbaker was never confirmed, so we never did meet with him. It turns out that that was not such a bad thing. We have been hearing rumors that he is looking to start slowing down his practice and might retire. I heard that he is in his 60s. He has helped many people and I think he deserves to take it easy if he wants.
When we got there, I went in to get my vitals taken, while Dr. Esquivel had a look at my latest CT scan. He came in shortly after that to examine me, which was basically just poking and prodding my stomach. He then said something to the effect, "You have nothing to worry about", then said he would me us in another room to discuss what saw.
As for the scans, he asked if we had seen them, and said yes, and that Dr. Loggie had already showed us where the "recurrence" was. He said he wouldn't bother then, and we went into a small room to talk.
He started off by saying that he did not want to know what Dr. Loggie said until after he told us what he thought. He then said that currently, he did not think we had anything to worry about for now. He said that after looking at the scans for the past 9 months or so, he did not see any significant growth of tumor, but did say he was not sure why the tumor markers continued to rise, but did not seem too concerned about it.
Something interesting that he said, coincided with something that Dr. Loggie said. Even though my initial pathology report said I had signet ring cells, he did not think I did. He told us that when people are diagnosed with signet ring cells, they usually don't live past 12 months, and here I am, 4 years later. He also said that the second pathology report we had done, did not mention signet ring, something we weren't sure about until Roni came back and looked at the second pathology report and saw that in fact, it DIDN'T mention signet ring cells. Dr Esquivel said that what might have happened was that there might have been a few cells, which were recorded in the pathology report, but in fact were so few, they should not have been mentioned.
Another thing he wondered about was the 3 out of 10 positive lymph nodes from my first surgery. He said if they were really positive, and I did in fact had signet ring cells, I probably wouldn't be here today.
He also agree with Dr. Loggie in that he did not think surgery was necessary right now. He said that because of where the tumor was (spleen and on the back side of the liver), he did not see any immediate need to cut me open. I was glad to hear that.
So overall, it was an encouraging consultation. I am still concerned as to why the tumor markers keep going up, but both Drs Loggie and Esquival do not see any immediate need to do anything. They're not even suggesting chemo right now. I can live with that.
One thing that does have to be done, is a new pathology report from my original surgery. Both Dr. Loggie and Dr. Esquival want to look at the original tumor to find out exactly what is going on. If they confirm that I, in fact, did NOT have signet ring cells, then that will explain some things. We also need to figure out what is going on with the tumor markers.
Well, that's all for now. I'll be scheduling an appointment soon with my oncologist to discuss the consultations with Dr. Loggie and Dr. Esquivel. I'll post again after that to let you know what my oncologist thinks should be done next.
Till then, thank you all again for keeping me in your thoughts and prayers.
Kevin
Now, on to what Dr. Esquivel had to say.
When we got there, I went in to get my vitals taken, while Dr. Esquivel had a look at my latest CT scan. He came in shortly after that to examine me, which was basically just poking and prodding my stomach. He then said something to the effect, "You have nothing to worry about", then said he would me us in another room to discuss what saw.
As for the scans, he asked if we had seen them, and said yes, and that Dr. Loggie had already showed us where the "recurrence" was. He said he wouldn't bother then, and we went into a small room to talk.
He started off by saying that he did not want to know what Dr. Loggie said until after he told us what he thought. He then said that currently, he did not think we had anything to worry about for now. He said that after looking at the scans for the past 9 months or so, he did not see any significant growth of tumor, but did say he was not sure why the tumor markers continued to rise, but did not seem too concerned about it.
Something interesting that he said, coincided with something that Dr. Loggie said. Even though my initial pathology report said I had signet ring cells, he did not think I did. He told us that when people are diagnosed with signet ring cells, they usually don't live past 12 months, and here I am, 4 years later. He also said that the second pathology report we had done, did not mention signet ring, something we weren't sure about until Roni came back and looked at the second pathology report and saw that in fact, it DIDN'T mention signet ring cells. Dr Esquivel said that what might have happened was that there might have been a few cells, which were recorded in the pathology report, but in fact were so few, they should not have been mentioned.
Another thing he wondered about was the 3 out of 10 positive lymph nodes from my first surgery. He said if they were really positive, and I did in fact had signet ring cells, I probably wouldn't be here today.
He also agree with Dr. Loggie in that he did not think surgery was necessary right now. He said that because of where the tumor was (spleen and on the back side of the liver), he did not see any immediate need to cut me open. I was glad to hear that.
So overall, it was an encouraging consultation. I am still concerned as to why the tumor markers keep going up, but both Drs Loggie and Esquival do not see any immediate need to do anything. They're not even suggesting chemo right now. I can live with that.
One thing that does have to be done, is a new pathology report from my original surgery. Both Dr. Loggie and Dr. Esquival want to look at the original tumor to find out exactly what is going on. If they confirm that I, in fact, did NOT have signet ring cells, then that will explain some things. We also need to figure out what is going on with the tumor markers.
Well, that's all for now. I'll be scheduling an appointment soon with my oncologist to discuss the consultations with Dr. Loggie and Dr. Esquivel. I'll post again after that to let you know what my oncologist thinks should be done next.
Till then, thank you all again for keeping me in your thoughts and prayers.
Kevin
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