Tuesday, June 28, 2005

The Work of Surviving -- Xeloda Advice

My family and I spent a few days with my friend who has breast cancer. She is not doing too well now, but she has been up and down for many years, fifteen years I think. I know it sounds strange, but I am somewhat envious of her. She loves life and gets excitement and enjoyment out of every bit of it. It's not that she has changed because of the cancer. She has always loved life, and she's been doing her best to hold onto it. Sometimes she gets her dark moods, but never weak moods.
I think she's been to every doctor in the Western Hemisphere and a few in the eastern. She is constantly doing research and making lists of questions. Sometimes she tells the doctors things they didn't know.
Her pet peeve is the ignorance doctors seem to have regarding the daily struggles that patients face. She has, according to her own story, and I believe it, lasted longer on Xeloda, a particular chemotherapy, than anyone else. The side effects are nasty and she has learned to manage them. Since, she feels, the doctors are not doing a good job of helping patients with these problems, she would like to share her insights. She has written a document that she has been xeroxing and handing out to likely candidates, or leaving in doctor's offices, and mailing to any who ask.
It has become more difficult for her to keep up with this process, and she is currently on a triple cocktail of new chemo drugs, so I offered to post it on my blog for her. I will post it below until I find a better home for it. I will be glad to forward messages and or questions if I find them appropriate.
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Posted Document by M.:

As a breast cancer patient who has survived nearly 8 years of chemotherapy since the metastatic spread of my disease, I have a complaint to make about cancer treatment: often patients are not adequately informed about the process of taking a specific drug. Doctors (or their physician assistants) in some instances for certain drugs need to be very detailed and almost create a recipe for successful taking of the drug. While sitting in waiting rooms, I have chatted with people in all phases of treatment. Many complain and insist "I can not take this drug. . . the side effects are too bad". We humans are all different and our bodies certainly respond differently to drugs, but I would think a few guidelines are needed. The purpose of this paper is to provide step-by-step instructions for the successful administration of the drug Xeloda or Capecitabine.
The cancer patient unfamiliar with Xeloda might imagine that taking chemotherapy by pill would be considerably more convenient than taking weekly injections . There would be need for one less needle puncture! However,the initial adjustment to the drug Xeloda is not like swallowing an aspirin and letting it do its thing.
As with many of the chemo drugs, establishing the effective and tolerable dose for a specific patient is not an exact equation and sometimes various dosages must be tried. Doctors establish an initial dosage by using your body weight. Often this initial dosage must be adjusted. Do not give up if your first dosage sends your body into physical despair. My body actually developed Parkinsons-like symptoms when I took the initial dose. I mean by this that all my muscles got very weak…most especially and noticeably my tongue—I could not speak, I could not swallow so I dribbled, my eyes teared and could hardly be made to focus. I scribbled in nigh illegible handwriting "I think I have had a stroke." Even though my mind was functioning and I knew everything that was happening, I felt like a viewer of my own strange condition. My family checked me into the emergency room expecting them to arrest my stroke. In short order, the ER folks assured me that this was not the case. I lay on their gurney for 5 hours being monitored and then they sent me home. The ER doctor said" Do not take any more of that drug until you speak to your medical oncologist who prescribed it." When I visited my regular oncologist his first response was "Discontinue the drug." I insisted that I did not want to give up taking this drug. I knew that it might be my last possibility for survival. Finally he said "Okay, one more attempt. Reduce the dosage by half and then work your dosage back up." At 1300 mg., the same horrible set of symptoms returned. I reduced the dose back one small 150 mg pill to 1100 and that is the dosage I took for two years. Very few people get this side effect—only 2%.
I knew that with my advancing breast cancer I had to be able to take this drug. I was not only tremendously determined, but also afraid of this drug that had the potential to extend my life. I experimented with methods and times to take it. The brochure that my doctor gave me informed me that this medication should always be taken with food twice a day. Even a simple stipulation like this required more attention than I initially imagined.
For example, when I first began the medication I was taking it twice a day with several swallows of food. One vomitous experience made me want to discontinue this drug. I had to try again. From then on I took the medicine with a pretty substantial meal. No more few swallows of whatever. I had a meal. Two staples that I included in my diet were cheese and kefir. The latter is a yogurty-like beverage that is high in protein. Our bodies need much protein to rebuild cells that the chemo destroys. Cheese helps me to avoid chemo-induced diarrhea.
Eating was one thing, drinking was another. Xeloda is a heavy duty medicine and I figured it had to be hard on the kidneys. I always chased my pills with two 8 ounce glasses of plain water.
I forced water the rest of the day. I got myself a big water bottle and it became my constant companion. Obviously, this necessitates frequent urination and that takes some planning. Coffee and soda and most juices were eliminated from my fluid diet.
The timing for administering the drug was also crucial. If I took Xeloda with a late breakfast and an early supper, an 8-10 hour spread , I was in trouble. Too little space between doses and I was overdosing and feeling as though my stomach could not hold itself together. I rearranged my schedule. A twelve hour spread was the allotment which allowed me to feel the best. I took my pills at breakfast at 6:30am and again at supper at 6:30pm. I carried spare pills and food and water with me. If it was 6:30 and I was on the subway, I whipped out my apple and cheese or banana and nuts. You must carry enough to cover for unscheduled interruptions in your meal plan. This medicine worked for me if I worked it that way.
Xeloda causes a very aggravating side effect called " hand-and-foot syndrome" (technically known as Palmar-Plantar Erythrodysesthesia).
My doctor described it as "inflamed capillaries." No one in the medical establishment seems to know how to prevent this burning hand and foot condition. I found an article written by a nurse. I raced through it looking for specific instructions about how to eliminate or reduce this symptom. To my dismay there were none. I called her on the phone and asked "Well what can we do?" "Nothing" she responds "Just stay off your feet and don’t use your hands." Great! What a life I thought. My extremities felt hot and burning. I told my doctor maybe if I put them on ice that would cool them off. "No, no" he emphatically proclaimed, "that will make it worse. Use Bag Balm cream like farmers use on the udders of cows. " That was too greasy and it did not take away the burn. Big half dollar sized pieces of skin would peel off my feet if I used nothing. I asked my doctor again. He went to a dermatologist and came back with a prescription for LAC-lotion (ammonium lactate). I now smear this magic lotion on my hands and feet 5-6 times a day. It absorbs very thoroughly and fast. I usually wear white socks under colored ones. The dyes on colored socks , I figured, could cause trouble in the open cracks in my skin . Removing socks and juicing up makes life effortful and somewhat ridiculous, but you must do it if you want to take this medicine. LAC-lotion only prevents the pain caused by shrinking skin. It does not take away the burn. Its use allows the skin to retain its elasticity and not peel off. This prevents the danger of infection. It also feels much better if it is flexible skin rather than a tight shrinking glove. I walk on my feet a reasonable amount in an effort to prevent the body from losing all its muscle tone. In a museum, I try to use common sense and have occasionally allowed myself to be driven around on a wheelchair.
I continue to do things with my hands. Certain tasks require special precautions. For example, I wear cement layer’s gloves purchased at the hardware store when I scrub the floor. I have another pair to do dishes. In the garden I use a heavy pair of mud gloves. I try never to get in prickly plants that could plant a thorn in me.
B-6 is a vitamin to remember if you take Xeloda. Xeloda seriously depletes your body of this vitamin. I have bottles of vitamin B-6 stashed in the car, in the upstairs bathroom, at the dinner table and in my purse. I buy 50 mg tablets, bite them in half and swallow a lot of water. I do this 4-5 times a day. If I don’t, my energy slips away and my thinking gets foggy. The hand-foot syndrome worsens without it also.
The protocol for Xeloda requires taking the pills twice a day for 2 weeks and taking none for one week. Then you start back up again. This is a serious chemotherapy drug and, like all, you must be vigilant. Many patients can not make it through the whole two week period. That is no reason to despair. If you are only able to manage 9 days, stop. The pain in the stomach (probably from too little food) is the major reason to stop. Doctors are, I think, too quick to permit you to stop if your feet look red. As long as they are not cracking open (because you are using your cream) try to ignore the pain. Do not , as so many I have known , dwell on this condition. Remember: your very life may depend on your being able to take this medicine.
After taking Xeloda for 4 or 5 rounds, you may discover that the hand-foot-syndrome may actually worsen during the weeks off the drug. My stomach seems to knot up the first day off the drug, too. I have grown accustomed to that feeling now and have learned to say "Oh, yeah today is the first day off the Xeloda."
One of the most irksome attributes of Xeloda therapy, is the bottomless sense of tired that results from the least exertion. Walking seems to use up your total energy. It almost makes you breathless—especially the two weeks when you are actually consuming the pills. Ask a friend to help you get a disability parking sticker. Go to the customer service center at the front of your grocery store and request that they send someone to the back of the store for that item you want.
You must modify your style if you are taking Xeloda.
Many of us race around in the morning trying to get out the door to work. Well, that racing is impossible on Xeloda. You must plan ahead. Arrange your clothes and prepare your lunch the nite before. Ask your spouse or friend to gas up your car. Allow others to do for you. Friends and family want to feel useful instead of helpless.
Sometimes you have to give up activities. For example, I regrettably gave up making porcelain pottery on the potter’s wheel. My hands were prone to cracking now and I figured it would be asking for trouble if I left bacteria from the clay seep into my hands. I took up beading instead. When I had not only physical energy but also creative energy, I assembled necklaces and bracelets as thank you presents for my helpful friends.
Just like selecting the battles we want to fight in life, the Xeloda patient must select his/her activities and energy-expending actions carefully. Some people absolutely must have a perfect physical environment. Objects and newspapers must be in their assigned locations. Okay you can give up your gardening time and keep the house perfect. If gardening feeds your soul and tidying doesn’t you may choose to sacrifice tidying and/or reduce your standards. You may have to choose between washing the windows or spending those sacred two hours with a gang of friends sharing a movie and conversation. A cancer diagnosis makes one cherish every moment. Xeloda forces one to seriously evaluate his/her use of time and energy.
One must carefully gauge one’s need for rest when on Xeloda. I have an inflatable mattress at work. I change my plans according to how tired I am. I gave away my precious ticket to the Neil Diamond concert. I knew it would take more energy than I had that day. Furthermore, my white blood cell count was low and I did not want exposure to all those germs from the university students who had just returned from venues all over this germ filled world. I started to go to less congested and free student concerts –when my energy was up.
Capecitabine, the scientific name for Xeloda, works havoc on rapidly reproducing membranes. For my dried out nose I buy cheap saline nasal spray. For my cracking lips I resort to lip moisturizing therapy. Because of lack of energy I confess I do not brush my teeth as often as I once did. I do try to keep my mouth clean by swishing water from one cheek to the other when I can’t brush. Mouth sores are a very common chemotherapy problem. Do not let them get to be problematic. Be vigilant and tell your doctor’s office as soon as you sense one coming.
Everybody’s body chemistry is different, so one never knows exactly what to expect. Some of us are allergic to dog hair and some to cat hair. I have included here the lessons that I have learned from my body over the 2-3 years I have been taking Xeloda. My hope is that some of my tips will help you. If not, be inventive
As a breast cancer patient who has survived nearly 8 years of chemotherapy since the metastatic spread of my disease, I have a complaint to make about cancer treatment: often patients are not adequately informed about the process of taking a specific drug. Doctors (or their physician assistants) in some instances for certain drugs need to be very detailed and almost create a recipe for successful taking of the drug. While sitting in waiting rooms, I have chatted with people in all phases of treatment. Many complain and insist "I can not take this drug. . . the side effects are too bad". We humans are all different and our bodies certainly respond differently to drugs, but I would think a few guidelines are needed. The purpose of this paper is to provide step-by-step instructions for the successful administration of the drug Xeloda or Capecitabine.
The cancer patient unfamiliar with Xeloda might imagine that taking chemotherapy by pill would be considerably more convenient than taking weekly injections . There would be need for one less needle puncture! However,the initial adjustment to the drug Xeloda is not like swallowing an aspirin and letting it do its thing.
As with many of the chemo drugs, establishing the effective and tolerable dose for a specific patient is not an exact equation and sometimes various dosages must be tried. Doctors establish an initial dosage by using your body weight. Often this initial dosage must be adjusted. Do not give up if your first dosage sends your body into physical despair. My body actually developed Parkinsons-like symptoms when I took the initial dose. I mean by this that all my muscles got very weak…most especially and noticeably my tongue—I could not speak, I could not swallow so I dribbled, my eyes teared and could hardly be made to focus. I scribbled in nigh illegible handwriting "I think I have had a stroke." Even though my mind was functioning and I knew everything that was happening, I felt like a viewer of my own strange condition. My family checked me into the emergency room expecting them to arrest my stroke. In short order, the ER folks assured me that this was not the case. I lay on their gurney for 5 hours being monitored and then they sent me home. The ER doctor said" Do not take any more of that drug until you speak to your medical oncologist who prescribed it." When I visited my regular oncologist his first response was "Discontinue the drug." I insisted that I did not want to give up taking this drug. I knew that it might be my last possibility for survival. Finally he said "Okay, one more attempt. Reduce the dosage by half and then work your dosage back up." At 1300 mg., the same horrible set of symptoms returned. I reduced the dose back one small 150 mg pill to 1100 and that is the dosage I took for two years. Very few people get this side effect—only 2%.
I knew that with my advancing breast cancer I had to be able to take this drug. I was not only tremendously determined, but also afraid of this drug that had the potential to extend my life. I experimented with methods and times to take it. The brochure that my doctor gave me informed me that this medication should always be taken with food twice a day. Even a simple stipulation like this required more attention than I initially imagined.
For example, when I first began the medication I was taking it twice a day with several swallows of food. One vomitous experience made me want to discontinue this drug. I had to try again. From then on I took the medicine with a pretty substantial meal. No more few swallows of whatever. I had a meal. Two staples that I included in my diet were cheese and kefir. The latter is a yogurty-like beverage that is high in protein. Our bodies need much protein to rebuild cells that the chemo destroys. Cheese helps me to avoid chemo-induced diarrhea.
Eating was one thing, drinking was another. Xeloda is a heavy duty medicine and I figured it had to be hard on the kidneys. I always chased my pills with two 8 ounce glasses of plain water.
I forced water the rest of the day. I got myself a big water bottle and it became my constant companion. Obviously, this necessitates frequent urination and that takes some planning. Coffee and soda and most juices were eliminated from my fluid diet.
The timing for administering the drug was also crucial. If I took Xeloda with a late breakfast and an early supper, an 8-10 hour spread , I was in trouble. Too little space between doses and I was overdosing and feeling as though my stomach could not hold itself together. I rearranged my schedule. A twelve hour spread was the allotment which allowed me to feel the best. I took my pills at breakfast at 6:30am and again at supper at 6:30pm. I carried spare pills and food and water with me. If it was 6:30 and I was on the subway, I whipped out my apple and cheese or banana and nuts. You must carry enough to cover for unscheduled interruptions in your meal plan. This medicine worked for me if I worked it that way.
Xeloda causes a very aggravating side effect called " hand-and-foot syndrome" (technically known as Palmar-Plantar Erythrodysesthesia).
My doctor described it as "inflamed capillaries." No one in the medical establishment seems to know how to prevent this burning hand and foot condition. I found an article written by a nurse. I raced through it looking for specific instructions about how to eliminate or reduce this symptom. To my dismay there were none. I called her on the phone and asked "Well what can we do?" "Nothing" she responds "Just stay off your feet and don’t use your hands." Great! What a life I thought. My extremities felt hot and burning. I told my doctor maybe if I put them on ice that would cool them off. "No, no" he emphatically proclaimed, "that will make it worse. Use Bag Balm cream like farmers use on the udders of cows. " That was too greasy and it did not take away the burn. Big half dollar sized pieces of skin would peel off my feet if I used nothing. I asked my doctor again. He went to a dermatologist and came back with a prescription for LAC-lotion (ammonium lactate). I now smear this magic lotion on my hands and feet 5-6 times a day. It absorbs very thoroughly and fast. I usually wear white socks under colored ones. The dyes on colored socks , I figured, could cause trouble in the open cracks in my skin . Removing socks and juicing up makes life effortful and somewhat ridiculous, but you must do it if you want to take this medicine. LAC-lotion only prevents the pain caused by shrinking skin. It does not take away the burn. Its use allows the skin to retain its elasticity and not peel off. This prevents the danger of infection. It also feels much better if it is flexible skin rather than a tight shrinking glove. I walk on my feet a reasonable amount in an effort to prevent the body from losing all its muscle tone. In a museum, I try to use common sense and have occasionally allowed myself to be driven around on a wheelchair.
I continue to do things with my hands. Certain tasks require special precautions. For example, I wear cement layer’s gloves purchased at the hardware store when I scrub the floor. I have another pair to do dishes. In the garden I use a heavy pair of mud gloves. I try never to get in prickly plants that could plant a thorn in me.
B-6 is a vitamin to remember if you take Xeloda. Xeloda seriously depletes your body of this vitamin. I have bottles of vitamin B-6 stashed in the car, in the upstairs bathroom, at the dinner table and in my purse. I buy 50 mg tablets, bite them in half and swallow a lot of water. I do this 4-5 times a day. If I don’t, my energy slips away and my thinking gets foggy. The hand-foot syndrome worsens without it also.
The protocol for Xeloda requires taking the pills twice a day for 2 weeks and taking none for one week. Then you start back up again. This is a serious chemotherapy drug and, like all, you must be vigilant. Many patients can not make it through the whole two week period. That is no reason to despair. If you are only able to manage 9 days, stop. The pain in the stomach (probably from too little food) is the major reason to stop. Doctors are, I think, too quick to permit you to stop if your feet look red. As long as they are not cracking open (because you are using your cream) try to ignore the pain. Do not , as so many I have known , dwell on this condition. Remember: your very life may depend on your being able to take this medicine.
After taking Xeloda for 4 or 5 rounds, you may discover that the hand-foot-syndrome may actually worsen during the weeks off the drug. My stomach seems to knot up the first day off the drug, too. I have grown accustomed to that feeling now and have learned to say "Oh, yeah today is the first day off the Xeloda."
One of the most irksome attributes of Xeloda therapy, is the bottomless sense of tired that results from the least exertion. Walking seems to use up your total energy. It almost makes you breathless—especially the two weeks when you are actually consuming the pills. Ask a friend to help you get a disability parking sticker. Go to the customer service center at the front of your grocery store and request that they send someone to the back of the store for that item you want.
You must modify your style if you are taking Xeloda.
Many of us race around in the morning trying to get out the door to work. Well, that racing is impossible on Xeloda. You must plan ahead. Arrange your clothes and prepare your lunch the nite before. Ask your spouse or friend to gas up your car. Allow others to do for you. Friends and family want to feel useful instead of helpless.
Sometimes you have to give up activities. For example, I regrettably gave up making porcelain pottery on the potter’s wheel. My hands were prone to cracking now and I figured it would be asking for trouble if I left bacteria from the clay seep into my hands. I took up beading instead. When I had not only physical energy but also creative energy, I assembled necklaces and bracelets as thank you presents for my helpful friends.
Just like selecting the battles we want to fight in life, the Xeloda patient must select his/her activities and energy-expending actions carefully. Some people absolutely must have a perfect physical environment. Objects and newspapers must be in their assigned locations. Okay you can give up your gardening time and keep the house perfect. If gardening feeds your soul and tidying doesn’t you may choose to sacrifice tidying and/or reduce your standards. You may have to choose between washing the windows or spending those sacred two hours with a gang of friends sharing a movie and conversation. A cancer diagnosis makes one cherish every moment. Xeloda forces one to seriously evaluate his/her use of time and energy.
One must carefully gauge one’s need for rest when on Xeloda. I have an inflatable mattress at work. I change my plans according to how tired I am. I gave away my precious ticket to the Neil Diamond concert. I knew it would take more energy than I had that day. Furthermore, my white blood cell count was low and I did not want exposure to all those germs from the university students who had just returned from venues all over this germ filled world. I started to go to less congested and free student concerts –when my energy was up.
Capecitabine, the scientific name for Xeloda, works havoc on rapidly reproducing membranes. For my dried out nose I buy cheap saline nasal spray. For my cracking lips I resort to lip moisturizing therapy. Because of lack of energy I confess I do not brush my teeth as often as I once did. I do try to keep my mouth clean by swishing water from one cheek to the other when I can’t brush. Mouth sores are a very common chemotherapy problem. Do not let them get to be problematic. Be vigilant and tell your doctor’s office as soon as you sense one coming.
Everybody’s body chemistry is different, so one never knows exactly what to expect. Some of us are allergic to dog hair and some to cat hair. I have included here the lessons that I have learned from my body over the 2-3 years I have been taking Xeloda. My hope is that some of my tips will help you. If not, be inventive

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