Well, here we are a day after the end of the second round of Xeloda and all, well most, is well.
The only thing that can complain about is some fatigue and a minor mouth sore, with a dose of dry mouth.
The good news is that I learned yesterday that the incidence of hand/foot syndrome is lower than I thought. Apparently the protocol of one week on and one week off of Xeloda creates less chance of hand/foot than other formulas. I also found that my numbers from the blood test had improved.
Tomorrow will be a quiet day for me as I prep for a colonoscopy on Friday. My GI doctor wants to make sure that all is well at the original scene of the crime. It is almost exactly 18 months after the discovery of my tumor.
The research manager was telling me about taking Miralax with Gatorade (actually G2) while we were purchasing it at Publix. She described it as Miralax with a G2 chaser. I was sort of listening, when she said "chaser" just as an attractive women with heels and short shorts walked toward the exit. I thought that she was telling me to chase her, but apparently not.
When I left the cancer center yesterday after my 1/2 hour infusion of Avastin, I was told that I should come in next week for "just" blood work. I am pleased that it will not be "unjust" blood work.
There has been an increased interest in Chaga mushroom tea lately spurred by my declaration that I have gone 18 months, often with very low white blood cell counts, without getting a cold. This, of course, includes exposure to hundreds of people at the bridge club.
All in all, things are good. Thanks for your interest and support, including those who thought of me during Yom Kippur.
Wednesday, September 26, 2018
Wednesday, September 19, 2018
Pretty Good
Pssst......are you still awake.
This Wednesday's blog is actually being done early Thursday morning. I am sorry that I am late.
Every morning, when I wake up, the research manager's first question is "How are you feeling?"
I invariably answer "Pretty good."
During the day, people ask me "How do you feel?"
I usually feel my skin and say "Pretty good."
What is "Pretty Good"?
From bottom to top.......
My feet have mild neuropathy, but not bad. We got wider shoes and some wonderful socks that keep my feet protected and feeling good.
My stomach and digestive system is in decent shape. Cholestyramine is doing wonders in keeping things under control.
My white blood cell count was not as good as I had hoped in the last blood test. I have to notify the doctor if I get any infection. My platelets are down, as is my red blood cell count.
My hands also have neuropathy. Again I protect them by wearing a glove when I play tennis. Yes....I only hit with one hand. So, technically, I only have to protect one hand. :)
I have one mouth sore which is somewhat controlled by rinsing and by using the Magic Mouthwash.
I have a few funny little bumps on my head, which the doctor says are normal.
I am now back on Xeloda and surviving. I actually feel "Pretty good."
Part of what made me late was watching the finals of America's Got Talent. I sat down on the couch next to the research manager and she said that she was getting goosebumps. That made me feel pretty good until I realized she was responding to one of the singers on the show.
The woman that I mentioned earlier continues to cross the tennis courts each day. I said "no" to the research manager's query about whether she was pretty, "Good ," she said.
One thing that makes me feel pretty good is your interest and prayers. Thanks, so much. It is part of what empowers me.
This Wednesday's blog is actually being done early Thursday morning. I am sorry that I am late.
Every morning, when I wake up, the research manager's first question is "How are you feeling?"
I invariably answer "Pretty good."
During the day, people ask me "How do you feel?"
I usually feel my skin and say "Pretty good."
What is "Pretty Good"?
From bottom to top.......
My feet have mild neuropathy, but not bad. We got wider shoes and some wonderful socks that keep my feet protected and feeling good.
My stomach and digestive system is in decent shape. Cholestyramine is doing wonders in keeping things under control.
My white blood cell count was not as good as I had hoped in the last blood test. I have to notify the doctor if I get any infection. My platelets are down, as is my red blood cell count.
My hands also have neuropathy. Again I protect them by wearing a glove when I play tennis. Yes....I only hit with one hand. So, technically, I only have to protect one hand. :)
I have one mouth sore which is somewhat controlled by rinsing and by using the Magic Mouthwash.
I have a few funny little bumps on my head, which the doctor says are normal.
I am now back on Xeloda and surviving. I actually feel "Pretty good."
Part of what made me late was watching the finals of America's Got Talent. I sat down on the couch next to the research manager and she said that she was getting goosebumps. That made me feel pretty good until I realized she was responding to one of the singers on the show.
The woman that I mentioned earlier continues to cross the tennis courts each day. I said "no" to the research manager's query about whether she was pretty, "Good ," she said.
One thing that makes me feel pretty good is your interest and prayers. Thanks, so much. It is part of what empowers me.
Wednesday, September 12, 2018
Feeling Good
An interesting week.
This was my first week using Xeloda and it went fairly well. There are been no major side effects. I have lost about 1/2 of the weight that I gained during my respite week. And my blood numbers have improved in virtually every category. Except my "Immature Gran" numbers are unchanged. So I am still as immature as before.
I am protecting my hands and feet, wearing a glove for tennis, new tennis shoes, thicker socks et cetera. So far no major issues with either, except perhaps a slight increase in neuropathy and my nails are growing irregularly and are chipping. I thought about using nail polish to cover my nails, but I could not find a color that I liked.
I am thinking about getting a pediatrician, er, a podiatrist to deal with the nails on my feet. Do you know the difference between the two? One deals with your feet and and other deals with those that can get under your feet.
I visited my GI doctor, yes the one who discovered my tumor that started my journey. He wants to do another colonoscopy just to check out what is happening down there. I will be doing that in a few weeks. I want to avoid a week in which I am taking Xeloda given the prep that is necessary.
After the exam, he asked me to close my eyes and forget that I ever had a colonoscopy, petscan or chemotherapy and then to tell him whether I felt like I had cancer. My honest answer was "no." He said that was good.
I was also buoyed by a study that indicated that tennis is one of the best forms of exercise to prolong your life (well, in this case, my life!) A significant part of the benefit is the socialization that you have with tennis.
So, all things considered, I am grateful for each and everyone of you that in different ways help me along this journey.
Above all, I continue to be astounded by the research and support that I receive from the research manager. "Thanks" is an inadequate word to express my appreciation.
This was my first week using Xeloda and it went fairly well. There are been no major side effects. I have lost about 1/2 of the weight that I gained during my respite week. And my blood numbers have improved in virtually every category. Except my "Immature Gran" numbers are unchanged. So I am still as immature as before.
I am protecting my hands and feet, wearing a glove for tennis, new tennis shoes, thicker socks et cetera. So far no major issues with either, except perhaps a slight increase in neuropathy and my nails are growing irregularly and are chipping. I thought about using nail polish to cover my nails, but I could not find a color that I liked.
I am thinking about getting a pediatrician, er, a podiatrist to deal with the nails on my feet. Do you know the difference between the two? One deals with your feet and and other deals with those that can get under your feet.
I visited my GI doctor, yes the one who discovered my tumor that started my journey. He wants to do another colonoscopy just to check out what is happening down there. I will be doing that in a few weeks. I want to avoid a week in which I am taking Xeloda given the prep that is necessary.
After the exam, he asked me to close my eyes and forget that I ever had a colonoscopy, petscan or chemotherapy and then to tell him whether I felt like I had cancer. My honest answer was "no." He said that was good.
I was also buoyed by a study that indicated that tennis is one of the best forms of exercise to prolong your life (well, in this case, my life!) A significant part of the benefit is the socialization that you have with tennis.
So, all things considered, I am grateful for each and everyone of you that in different ways help me along this journey.
Above all, I continue to be astounded by the research and support that I receive from the research manager. "Thanks" is an inadequate word to express my appreciation.
Wednesday, September 5, 2018
Changes
This has been a week of change.
The first change is that I gained too many pounds during my week away. The interesting thing is that many have told me that I look great (better than before.) So the best way to look good is to gain weight? It seems like only a few months ago people were saying that I looked good because I had lost weight. Who knows.
The next change or should I say changes result from leaving the research manager at home alone with her computer for a week. We have added several items to the repertoire. Black seed oil, K2, sublingual B12 and, of course, Xeloda.
The challenge is to know how to take them. I got a double whammy from the research manager this morning. I was to take the sublingual B12 before breakfast, which I did, holding it under my tongue for 30 seconds and then, emptying the kitchen sink of soapy water so that I could spit it out. Wrong. I was then supposed to swallow it. Later, after breakfast, the research manager asked why on earth I had let the water out of the sink as she was going to clean the frying pans from breakfast.She then realized and I had to admit it was to spit out the B12 that I was not supposed to spit out. So.......whammy one and whammy two!
My first visit yesterday was at the cancer center where I got my first infusion of Avastin in the new protocol. We then sped over to Moffitt Cancer Center for my second opinion meeting with Dr. Levine. He is an interesting guy, quite traditional with a friendly style. While I am hoping this connection will lead to future trials, in the meantime, there is total agreement that Xeloda is the right course for now. Dr. Levine indicated that there is a lot of ammo that we can use and my plan is to keep using traditional ammo until some new things are proven. He is ordering some tests on the tumor that was removed to help determine my suitability for such things as genetic manipulation.
I took my first 4 Xeloda pills last night and have done eight more today. This has brought more change. As an aside, I learned that my recent vitamin D reading was actually 81.9 and not 28. Apparently the doctor was looking at the wrong report. So, no more speedo and no nude bathing. That is a good thing for more than one reason. The real reason is that with Xeloda, I should avoid sunlight as Xeloda can affect the skin's reaction to too much sun. So, I now have a hat for tennis and am applying sunscreen.
The next change is that I am now wearing a glove to play tennis. A good percentage of people get hand and foot syndrome with Xeloda. This manifests itself as blisters on the hands and feet. So protection against trauma to the hands and feet is important. One of my doctors even suggested that I should not play tennis. Fat chance of that happening. I also have to apply a special cream to my hands and feet.
I read recently that depression can be a problem. I don't intend to let that happen, but just imagine, if you are getting treatment, got depressed and lived further south, you might cause a hurricane. Why? It would be a "tropical depression."
I wasn't going to include that last paragraph to spare you the groaner, but I changed my mind!
The first change is that I gained too many pounds during my week away. The interesting thing is that many have told me that I look great (better than before.) So the best way to look good is to gain weight? It seems like only a few months ago people were saying that I looked good because I had lost weight. Who knows.
The next change or should I say changes result from leaving the research manager at home alone with her computer for a week. We have added several items to the repertoire. Black seed oil, K2, sublingual B12 and, of course, Xeloda.
The challenge is to know how to take them. I got a double whammy from the research manager this morning. I was to take the sublingual B12 before breakfast, which I did, holding it under my tongue for 30 seconds and then, emptying the kitchen sink of soapy water so that I could spit it out. Wrong. I was then supposed to swallow it. Later, after breakfast, the research manager asked why on earth I had let the water out of the sink as she was going to clean the frying pans from breakfast.She then realized and I had to admit it was to spit out the B12 that I was not supposed to spit out. So.......whammy one and whammy two!
My first visit yesterday was at the cancer center where I got my first infusion of Avastin in the new protocol. We then sped over to Moffitt Cancer Center for my second opinion meeting with Dr. Levine. He is an interesting guy, quite traditional with a friendly style. While I am hoping this connection will lead to future trials, in the meantime, there is total agreement that Xeloda is the right course for now. Dr. Levine indicated that there is a lot of ammo that we can use and my plan is to keep using traditional ammo until some new things are proven. He is ordering some tests on the tumor that was removed to help determine my suitability for such things as genetic manipulation.
I took my first 4 Xeloda pills last night and have done eight more today. This has brought more change. As an aside, I learned that my recent vitamin D reading was actually 81.9 and not 28. Apparently the doctor was looking at the wrong report. So, no more speedo and no nude bathing. That is a good thing for more than one reason. The real reason is that with Xeloda, I should avoid sunlight as Xeloda can affect the skin's reaction to too much sun. So, I now have a hat for tennis and am applying sunscreen.
The next change is that I am now wearing a glove to play tennis. A good percentage of people get hand and foot syndrome with Xeloda. This manifests itself as blisters on the hands and feet. So protection against trauma to the hands and feet is important. One of my doctors even suggested that I should not play tennis. Fat chance of that happening. I also have to apply a special cream to my hands and feet.
I read recently that depression can be a problem. I don't intend to let that happen, but just imagine, if you are getting treatment, got depressed and lived further south, you might cause a hurricane. Why? It would be a "tropical depression."
I wasn't going to include that last paragraph to spare you the groaner, but I changed my mind!
Subscribe to:
Posts (Atom)