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
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