Today is about my halfway point through my chemo treatment. So far I have had three infusions of Oxiliplatin and two round of oral Xeloda.
The bad news is the side effects. The Xeloda just makes me tired, but the Oxiliplatin is harsh. Right after the infusion, the neuropothy gets pretty bad. The main thing is the pain the cold causes. Eventually the side effects start to wane, but it takes awhile. As a matter of fact, it takes about 8 to 10 days before I can even start to drink anything that is cold.
The good news is that the chemo seems to be working. In December, my CEA tumor marker jumped up to 28.9 (should be between 0 - 2.5). That is a bit of jump from even a a few months ago when it was 10. Fortunately, after just two rounds of Oxiliplatin, that number dropped to 19.8. On Monday when I go in for my fourth infusion, we will have another blood test taken which will show what the new number is after 3 rounds of Oxiliplatin. (The blood test is taken before the infusion, so it only shows the results from the infusion two weeks before).
One of the difficulties I have had is getting some exercise. Because of the cold weather we have been experiencing here in NYC, I can not go outside for a walk. So, I am stuck inside. Because of this, and to help us have easier access to some exercise machines, we got a good deal from Bowflex which included a weight training machine and a Schwinn stationary bike. The bike includes the ability to electronically measure time, distance, calories burned, etc. Over the past week I have been able to set up these machines and yesterday even took a couple of 10 minutes "rides" on the bike. That was enough to wear me out, but that makes sense as I have not been getting ANY exercise for the past month or so. Hopefully this will help keep me in shape and ready to get back to "Life" after the chemo is done.
That is my update for now. Thank you all again for your prayers, thoughts, and support.
Kevin
Friday, January 16, 2009
Friday, January 02, 2009
One Day at a Time
I know, I know... It's been a long time since I've posted anything, and everyone wants to know what the heck is going on. So here goes.
Since I last wrote, I had the PET Scan I told you about. The area where the tumor is lit up. That was a bad thing. Dr. Esquival recommended doing three months of chemo, using the Xelox protocol. That is Xeloda (which I did earlier this year) and Oxiliplatin, which I had when I was first diagnosed. The Xeloda just made me tired. The Oxiliplatin really does a number on me. Wipes me out for about a week. Dr. Ratner, my oncologist agreed with Dr. Esquival, and on December 8th, I started taking my Xeloda (which is in pill form) and went in for my first infusion of Oxiliplatin.
I take the Xeloda for two weeks, then take a week off. I have the infusions every two weeks. Monday, Jan 5th will be my third infusion.
One of the bad side effects of the Oxiliplatin is a bad reaction to cold. I cannot drink, eat or touch anything cold. If I go outside, I have to have my mouth covered or it starts to feel like my throat is closing up. Some of you may not think this is too bad, but think about it. You cannot drink ANYTHING cold. No cold water, juice, milk, soda... anything. If you do, it's like swallowing razor blades. And even when you are able to start tolerating drinks that are not hot, you can only take one swallow at a time. This makes keeping hydrated a bit tough.
You want something to eat? If you open the fridge, you can't touch anything in there without wearing gloves. You can't turn the cold water on to wash your hands. You have to wait until it heats up before you can put your hands under the water. After my second infusion, I couldn't even hold a metal fork because it felt like I was holding onto ice, and it started to burn. The main effect the cold has is neuropothy. You know when your arm or leg falls asleep and then the blood starts rushing back in and you get that pins and needles feeling? Well, multiply that by like 20 and that is what I have when it is cold. Even though it eventually wears off, I can still feel it in my left arm (where I get the infusion), and in my toes and fingers.
And of course, I am getting this done during the coldest part of the year. So far both days I had infusions it was below freezing outside. And since it is cold, I can't really go outside without really bundling up.
Fortunately, that is the worst of the side effects. There is usually a little nausea a few days after the infusion, but I have some meds to help with that. Oh, and I just feel tired all the time. Other than that, I'm feeling great. :-)
Now on to other news. The day before I found out I had to go back on chemo, I was told I was being laid off from Time Inc., where I had worked for the past 12 years. The bad economy had hit us hard and they were laying off A LOT of people, so it didn't hit me as much of a surprise. I was told that Dec 30th would be my last official day. Apart from not knowing what I will do next, it was really a blessing in disguise. I was able to work it out so that through all of this, we still have my income (thanks to disability and severance). And Roni still has her job there, so we are still covered with health insurance and all the other perks Time Inc. offers.
So that is where things stand for now. I do a lot of laying around watching TV as I don't have much energy to do much else most of the time.
I'm sorry I haven't done a better job of keeping up with this blog, but since I have more spare time, I'll try to post more often.
Thank you all for your prayers and well wishes.
Kevin
Since I last wrote, I had the PET Scan I told you about. The area where the tumor is lit up. That was a bad thing. Dr. Esquival recommended doing three months of chemo, using the Xelox protocol. That is Xeloda (which I did earlier this year) and Oxiliplatin, which I had when I was first diagnosed. The Xeloda just made me tired. The Oxiliplatin really does a number on me. Wipes me out for about a week. Dr. Ratner, my oncologist agreed with Dr. Esquival, and on December 8th, I started taking my Xeloda (which is in pill form) and went in for my first infusion of Oxiliplatin.
I take the Xeloda for two weeks, then take a week off. I have the infusions every two weeks. Monday, Jan 5th will be my third infusion.
One of the bad side effects of the Oxiliplatin is a bad reaction to cold. I cannot drink, eat or touch anything cold. If I go outside, I have to have my mouth covered or it starts to feel like my throat is closing up. Some of you may not think this is too bad, but think about it. You cannot drink ANYTHING cold. No cold water, juice, milk, soda... anything. If you do, it's like swallowing razor blades. And even when you are able to start tolerating drinks that are not hot, you can only take one swallow at a time. This makes keeping hydrated a bit tough.
You want something to eat? If you open the fridge, you can't touch anything in there without wearing gloves. You can't turn the cold water on to wash your hands. You have to wait until it heats up before you can put your hands under the water. After my second infusion, I couldn't even hold a metal fork because it felt like I was holding onto ice, and it started to burn. The main effect the cold has is neuropothy. You know when your arm or leg falls asleep and then the blood starts rushing back in and you get that pins and needles feeling? Well, multiply that by like 20 and that is what I have when it is cold. Even though it eventually wears off, I can still feel it in my left arm (where I get the infusion), and in my toes and fingers.
And of course, I am getting this done during the coldest part of the year. So far both days I had infusions it was below freezing outside. And since it is cold, I can't really go outside without really bundling up.
Fortunately, that is the worst of the side effects. There is usually a little nausea a few days after the infusion, but I have some meds to help with that. Oh, and I just feel tired all the time. Other than that, I'm feeling great. :-)
Now on to other news. The day before I found out I had to go back on chemo, I was told I was being laid off from Time Inc., where I had worked for the past 12 years. The bad economy had hit us hard and they were laying off A LOT of people, so it didn't hit me as much of a surprise. I was told that Dec 30th would be my last official day. Apart from not knowing what I will do next, it was really a blessing in disguise. I was able to work it out so that through all of this, we still have my income (thanks to disability and severance). And Roni still has her job there, so we are still covered with health insurance and all the other perks Time Inc. offers.
So that is where things stand for now. I do a lot of laying around watching TV as I don't have much energy to do much else most of the time.
I'm sorry I haven't done a better job of keeping up with this blog, but since I have more spare time, I'll try to post more often.
Thank you all for your prayers and well wishes.
Kevin
Sunday, November 09, 2008
Trip to Baltimore
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
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
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
Sunday, December 30, 2007
Never Underestimate The Power of Denial
No, I'm not talking about the Aswan Dam. I'm talking about the ability to ignore things that can kill you. For me, that thing is cancer.
For the past few months, since we have learned that the cancer seems to have returned, I have vacillated between thinking the worse, and just ignoring the whole thing in hopes it would disappear. Both ways of dealing with this are wrong. But at least with Denial, you don't spend your time wondering "what if?"
So, where do things stand for now?
Roni and I have started down the road of meeting with PMP specialists. A couple of weeks ago, we met with Dr. Loggie in Omaha, NE. We really liked him and appreciate his philosophy of treating the patient and not just the disease. He also said that he is more concerned about giving me the best "Quality of Life" for as long as possible. He also said that includes not jumping into surgery right away as it seems that otherwise, I am doing very well. And apart from having this thing growing inside of me, which left untreated can kill me, I am doing fairly well. I feel fine and am fit. OK, I do need to get back to the gym, but I'm no worse off than many others that don't even have cancer.
In lieu of surgery, Dr. Loggie suggests we try the simplest things first. This means that right now I am starting with just a COX 2 inhibitor (Sulindac - similar to Celebrex). He said he has seen some success with that, albeit very little success. If that doesn't seem to help, we will most likely add Xeloda to the mix. Xeloda is an oral form of chemo, which I was on when all of this began. I tolerated it OK, and it is much easier to take than having an IV stuck in my hand and then having poison pumped into my body.
As for surgery? Barring a miracle (which we continue to pray for), surgery is inevitable. We're just not sure when.
And next week, we are heading to Washington DC to meet with Dr. Sugarbaker to get his opinion, then on to Baltimore to meet with Dr. Esquival to get his take on things. Dr. Esquival trained under Dr. Sugarbaker, and actually assisted him with my surgeries. I know this for a fact because we got a bill from him. :-)
That will give us the opinion of three PMP specialists, and we will then decide who we want to go with.
One good thing about the trip to DC is that we are heading down there on Saturday, Jan 5th and we will spend Sunday, Jan 6th doing some sightseeing and just enjoying the city. My appointments are on Monday, so we will head home Monday afternoon after my last consult. So, sometime after that, I'll post again letting you all know what happened.
Until then, thank you all for your prayers and support. Even though they are not needed as urgently as last time, they are still greatly appreciated.
Kevin
Monday, November 05, 2007
Update Long Overdue
I noticed I haven't posted since Sept 11, less than two months ago. For those wondering how everything went, I'm afraid the news is not so good.
My tumor markers continued to climb, and the CT scan confirmed what we feared, the tumor seems to be back and growing. Fortunately, it seems to be growing slowly, which gives us time to decide the best plan of action.
We heard back from Dr. Sugarbaker (the doctor who operated on in Feb and July 04) and he is suggesting we just wait and see what happens, and to continue with the normal routine of tumor marker tests and CT scans. I don't feel very comfortable with just waiting though. In the meantime, we are contacting some other PMP specialists to get some more opinions. The trick is, we have to travel to see these other doctors. Two are in Baltimore, and unfortunately see patients on different days. The other specialist is in Omaha, NE. We haven't made any appointments yet, but when we do, I'll post again with more info.
And now some good news. Last month we got our new lease for our apartment, and they wanted to raise the rent almost 17%. That was way too much, especially for the small 1 bedroom apartment we have. After looking around, we have discovered that we can no longer really afford to live in Manhattan, so we found a new apartment in Riverdale (which is part of The Bronx). Although we are moving out of "the City", we will still officially be in New York as The Bronx is one of the boroughs of NYC. The rest of the good news, our new apartment is much bigger than our current apt. We will have two bedrooms and two full bathrooms. Besides closets in both bedrooms, there are three other closets (1 linen closet and two other large closets). This means we will have much more space and will finally be able to put everything away, and all of this will cost us about $200 less than what we are paying right now. And the bonus is, we'll have a balcony. That is one thing I am really looking forward to.
So right now, we are in packing and moving mode. Once we get settled in the new place, we will have to get in "meeting with doctors" mode. Something I'm not especially looking forward to.
Needless to say, both Roni and I were disappointed to hear the news about the recurrence, especially as I had been doing so well, and had made it to the 4 year mark of being diagnosed. But we have gone through this before and know what to expect, which is one reason I'm not looking forward to it. :-) I don't relish the thought of more chemo and another surgery at all. But I've done it before, and will do it again if need be.
We have been praying for a miracle, and we cherish all of your prayers as well. Sorry again for not posting sooner, but aside from moving, I've been trying to ignore anything to do with cancer. As we say, never underestimate the power of denial. :-)
Kevin
Tuesday, September 11, 2007
One More Week...
... till my next tumor marker test.
Some people have been asking how I have been doing, so I thought I would put up a quick post to let you all know.
I'm doing pretty good, all things considered. Feeling fine, and trying not to worry about something I don't know of for sure. Although I haven't been in about a week, I have been going back to the gym. I haven't gone riding in a few days because the bike is at the dealer's for its 5000 mile service. I hope to pick it up tomorrow and will probably have 400 more miles on it by the end of the weekend. So apart from the fact that I MIGHT have recurrence, I'm doing pretty well.
I have my tumor marker test next Monday, then will schedule my next CT scan shortly after that. Once I get those results, I'll let post again. Until then, I'm going to try and not to worry about things. Of course, sometimes that is easier said than done. :-)
Kevin
Some people have been asking how I have been doing, so I thought I would put up a quick post to let you all know.
I'm doing pretty good, all things considered. Feeling fine, and trying not to worry about something I don't know of for sure. Although I haven't been in about a week, I have been going back to the gym. I haven't gone riding in a few days because the bike is at the dealer's for its 5000 mile service. I hope to pick it up tomorrow and will probably have 400 more miles on it by the end of the weekend. So apart from the fact that I MIGHT have recurrence, I'm doing pretty well.
I have my tumor marker test next Monday, then will schedule my next CT scan shortly after that. Once I get those results, I'll let post again. Until then, I'm going to try and not to worry about things. Of course, sometimes that is easier said than done. :-)
Kevin
Monday, August 06, 2007
Possible Recurrence...
One day after my last post, I had my CT scan. That same day I shipped the films off to Dr. Sugarbaker to get his take on things.
According to the report made by the radiologist that read the films, there was only one spot of concern. The spot was on the small bowel and mesentery (the tissue that connects the small bowel to the back wall of the abdomen). This was a little disconcerting, but I wanted to hear back from Dr. Sugarbaker before I started worrying about anything.
A few days after the scan, I got a call from Dr. Sugarbaker's office, and the news wasn't good. According to Dr. Sugarbaker, he saw three spots that could be recurrence. One spot is on the stomach, one on the spleen and one on the omental bursa. Dr. Sugarbaker suggests surgery, which would result in me losing my stomach and spleen, and that would be the easy part. Supposedly the hardest part would be getting the spot on the omental bursa, which would require going through the diaphragm, and being careful not to nick the aorta.
The strange thing is, he didn't even metion anything about the small bowel and mesentery, so I guess he didn't believe that was anything to worry about.
Needless to say, this was certainly NOT the news we were hoping for. Being told that I have a recurrence, and the thought of going through yet another surgery was pretty devastating. I just started going through everything that I would have to do again like drink the go-lytely (the really yummy stuff that cleans out your bowels for surgery, and by "yummy", I really mean yucky), go through the surgery, deal with the NG tube (have I ever mentioned how much I hate the NG tube?), go through recovery in the hospital for 2 - 3 weeks, then probably that much time again at home, get the stitches removed, and of course, learning to eat without a stomach.
So, what to do. Last week Roni and I met with my oncologist to discuss my options. The options are 1) wait a couple of months and have another CT scan, 2) try chemo or 3) go for the surgery. We have decided for now to wait the two months and then have another round of tests (tumor markers and CT scan). The main reason for this is so Dr. Sugarbaker will have another set up films to compare with the last ones, and if something is there, then we can determine what to do from there. But we are praying that the spots that are there now, will either be stable, or even better, they will completely disappear. We believe G-d can, and does do miracles, and we pray that He will do one for us.
Personally, I'm doing OK. Just trying not to dwell on "what could be" and just live the best I can. I've been riding the Harley, and even going to the gym about 3 times a week. Sometimes the fears creep in, and I have to be careful not to go down that road, thinking of the worst situations. This is not always easy to do, but I just remind myself that none of us are guaranteed tomorrow, so I am thankful everyday for all that I have, I live in a great city, have a good job, I ride a Harly, and most importantly, I have a great and beautiful wife.
According to the report made by the radiologist that read the films, there was only one spot of concern. The spot was on the small bowel and mesentery (the tissue that connects the small bowel to the back wall of the abdomen). This was a little disconcerting, but I wanted to hear back from Dr. Sugarbaker before I started worrying about anything.
A few days after the scan, I got a call from Dr. Sugarbaker's office, and the news wasn't good. According to Dr. Sugarbaker, he saw three spots that could be recurrence. One spot is on the stomach, one on the spleen and one on the omental bursa. Dr. Sugarbaker suggests surgery, which would result in me losing my stomach and spleen, and that would be the easy part. Supposedly the hardest part would be getting the spot on the omental bursa, which would require going through the diaphragm, and being careful not to nick the aorta.
The strange thing is, he didn't even metion anything about the small bowel and mesentery, so I guess he didn't believe that was anything to worry about.
Needless to say, this was certainly NOT the news we were hoping for. Being told that I have a recurrence, and the thought of going through yet another surgery was pretty devastating. I just started going through everything that I would have to do again like drink the go-lytely (the really yummy stuff that cleans out your bowels for surgery, and by "yummy", I really mean yucky), go through the surgery, deal with the NG tube (have I ever mentioned how much I hate the NG tube?), go through recovery in the hospital for 2 - 3 weeks, then probably that much time again at home, get the stitches removed, and of course, learning to eat without a stomach.
So, what to do. Last week Roni and I met with my oncologist to discuss my options. The options are 1) wait a couple of months and have another CT scan, 2) try chemo or 3) go for the surgery. We have decided for now to wait the two months and then have another round of tests (tumor markers and CT scan). The main reason for this is so Dr. Sugarbaker will have another set up films to compare with the last ones, and if something is there, then we can determine what to do from there. But we are praying that the spots that are there now, will either be stable, or even better, they will completely disappear. We believe G-d can, and does do miracles, and we pray that He will do one for us.
Personally, I'm doing OK. Just trying not to dwell on "what could be" and just live the best I can. I've been riding the Harley, and even going to the gym about 3 times a week. Sometimes the fears creep in, and I have to be careful not to go down that road, thinking of the worst situations. This is not always easy to do, but I just remind myself that none of us are guaranteed tomorrow, so I am thankful everyday for all that I have, I live in a great city, have a good job, I ride a Harly, and most importantly, I have a great and beautiful wife.
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