All about Xeloda
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At times it would be difficult to walk, especially for long periods and if I developed deep cracks. But not too bad. I work from home, so that helped a lot. But they are so much better now. You can't get rid of it, but you can make it more tolerable.
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Goldie-I am 70 and feel 100! For 6 of my 17 + years, I was on Herceptin only....until my chest node recurrence 9 years ago.
I don't wear the silicone socks during the day, only at night. But at least they aren't as slippery as the baggies were!
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Cling-good for you! I have given up on being able to do much any more, so I am okay with the Herceptin every 3 weeks.
My former chest node met - (the anterior mediastinum) pressed against the nerve going down to my left diaphragm and now it doesn't move well. So I get out of breath even with 10 minutes of yard work.
So I am glad that I can spend my days selling on the internet-on 4 sites. Keeps me busy and out of trouble, and also helps to pay my bills.
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After having 2 good rounds, I find this 3rd round has knocked me for 6. Sickness and diahrea and feeling really fatigued. I have spoken to nurses who have said they will delay treatment for a week and then dose reduce. Feeling low at the moment, when will my energy come back. Still I had a good week away last week, thankful for small mercies it wasn't this week.
Love to all of you stage 4 ladies. Your posts are great x
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Anybody else kind of afraid not to take X during your week off? I’m worried things will grow on my off week!!
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Not me! I've been on it for 4 years and look forward to my week off.
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Goldie, I hope I get to that place! And I sure hope I get a long time on it like you habr
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Hi everyone, I've been gone for awhile. Lots of good information here. I am feeling great on X. I start on cycle 3 on Tuesday. Will see MO on June 12 and she'll order PET. I think it's working. Last weekend, on my Retreat from Cancer with Say Yes to Hope, I was able to walk up three flights of stairs without having to stop from SOB. Three months ago I could not do that. I'm hopeful about lung mets responding, who knows about liver mets. UGH
The retreat was my first. I met several new stage IV survivors and several y90 survivors. Their stories are amazing. They interviewed me again, I'm not sure when it will be on U tube. No gowns, make up or modeling on this one. Just camping attire, the real me. Most of the c survivors have colon cancer. We went to SE Oklahoma near Beavers Bend State Park. It's beautiful there.
My MO told me to take B 6. She says it can help prevent HF. I don't have HF or any SE from X. Sure hope that continues and that X is working.
More later.💞
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Gracie-Usually the SE's get worse on our week off, since the X is still working. If the pills quit working on our week off, we wouldn't have that week off.
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Denny, to be doing all of this and for so long at 70, you are amazing. Is that you in your avatar?
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That picture is 17 years old-LOL. But that was when my liver was in crisis and my hair was just growing back after A/C. I weigh 15 pounds more now.
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So you were 55 then Denny? Still beautiful and I'm sure you are just as beautiful today. And always an inspiration. I am 60, and hope I can live to see 70 and maybe even 80, if I'm not an old decreped old lady! I don't feel 60, that's for sure!
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Had anyone else completely lost their appetite? I'm dealing with a ton of constipation and eating is seriously impossible. Nothing sounds good and most food makes me naeseous, weight is falling off, which it's not supposed to do! I need help with this!
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I felt like that on my first cycle, just no appetite, not ever feeling hungry but I must have eaten enough because I did not lose weight. The second cycle my appetite was better and now it's good on my third cycle. How many months have you been on X? Has your dose been reduced, Gracie ?
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I felt like that on my first cycle, just no appetite, not ever feeling hungry but I must have eaten enough because I did not lose weight. The second cycle my appetite was better and now it's good on my third cycle. How many months have you been on X? Has your dose been reduced, Gracie ?
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yes, reduced from 4000 to 3000, am on round three, on my seven off, I thought it might get better but I’ve lost six pounds in two weeks. Doesn’t seem like much, but I’m just still not hungry at all
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I forgot we're twins. Lol I lost so much on AA and have not gained any of it back. PTL. Because I like the size I am now. I even needed a size smaller for my new prosthesis at the boob store. And for my new bras. Now that my appetite is coming back, I need to be careful or I will gain..
Gracie I know it's miserable to have no appetite and lose weight you can't afford to lose so I hope next month will be a turning point for you. I am so anxious to know if X is working. That's all I can think about. I think I have to wait about 3 more weeks for PET. When is your scan? I so hope it's working for both of us. 💞
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Has anyone experienced fatigue on Xeloda? I'm on 3000mg a day and I feel wiped out. Especially when I wake up, it takes me a while to feel any sense of energy. This is my second cycle and my HFS seems mild, just looks like hands are dry like in winter months. I'm mostly just feeling fatigue
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Ann, I started X in January. I, too, experience fatigue but have no solution to offer. I find that HFS is cumulative. Good luck!
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That was what I'm afraid of, Joyner. Sigh..
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Gracie, I just finished my 3rd cycle sand have completely lost my appetite. Not like me at all! My weight has stayed steady though. Ann, I am extremely fatigued, saw my onc yesterday my hemoglobin is low and that plus the Xeloda is the cause she says. My dose has been reduced from 4600 to 4000. I am suffering and I mean suffering with the hand and foot issues. She wants me to try 1 week on and 1 week off before she reduces again.
I am doing all of things that I have read here and am discouraged. Many people say Xeloda is easily tolerated but I have struggled from the first cycle.0 -
Hi Lynnwood, I do wonder if its the dosage. I was on 2000mg last cycle and I couldn't feel a thing. We bumped it up to 3000 and almost immediately my energy levels dropped. I still dont see major signs of HFS but am sure since its cumulative Ill start seeing it soon. Pretty sure we're going to need to play around with the dosage before finding that right balance.
Those who have been on Xeloda for more than 5 cycles, can y'all let us know the dosage you are on? Thank you!
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Ann, yes I believe the dose has a lot to do with it. I know the dose goes by weight and I am certainly not a little thing by any means. My onc did say that it’s a delicate balance between a dose strong enough to knock the cancer back and a dose low enough to allow us to function.
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I believe I read on another site that some oncs prescribe a dose that is NOT weight/body area dependent, but is instead a “commonly prescribed dosage" based on clinical experience of what is a sustainable dosage. I believe that is my onc's approach. Lynnwood, I'm the same height as you and onIy on 3,000. I know of another person who Is half my height and weight and is also on 3,000. That seems to be a common dose, but I know some others here are on higher. Your poor feet!
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Goldie-I was 53 then and I am 70. (ugh). Thanks for the compliment.
Lynnwood-please cut off the loose skin. Much better to keep it trimmed, so that you don't catch it on something and rip into the "not-loose" skin....for fear of infection.
I always have an appetite, unfortunately. I am only on 2,000 a day and have constant fatigue. But my nurses and onc tell me it is because I have been on chemo for 17 years.
Exercising does help the fatigue, although my feet hurt too much to do so.
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Denny, thanks for the advice, I wasn’t sure about cutting off the loose skin, I was afraid of cutting too close. I’m gonna try and trim some off. Moissy, great article!! Definitely will be discussed with my onc.Thanks so much for sharing!
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Ann, I have been on Xeloda since mid November, 7 on and 7 off. I started with 2000/day and gradually increase to current 4000/day. I am around 145 lbs. Other than a little fatigue, I tolerate SEs very well. No HFS yet..I really believe the increase dosage method this time helped me.
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Good morning, all. Quick update: My HFS had progressed to Grade 2 by about a month ago (peeling hands and feet (more on feet than hands), very red and stiff hands, and reduced tactile feeling in finger tips (I realized in bed that I couldn't feel the difference easily between a sheet and a blanket with my fingers tips). I started in Jan on 3000 mg/da: 3 am and 3 pm, 7 on/7 off. I weigh 135-140 and am 5'6 1/2" and just turned 73. Generally good shape physically but fatigued and stiff. Onc dropped me to 2500 mg (3 am + 2 pm) for this past cycle. I must be on my 10th cycle of so. We'll see. It's surely a difficult decision, trying to decide how much you can stand before backing off on dosage, and not knowing whether the change could allow progression.
Goldie, I, too, look forward to my week off. I have just started trying the Atac-Tain (sp?) after checking with my dermatologist. She said go for it. First time last night, and all looks good this AM. I use Retin-A on my face (vanity) so I know how retinoic acid generally feels on the skin. Thank goodness for the wonderful advice and input from this string. Thank you.
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Grannax, my scans aren't until another month. I pray it's working, this carp is getting very scary! Did just put me on morphine sulfate, that scares the neck outta me! So mornin wondering if I can take soften with it! If it's not one thing it's another!
Praying your scans come back great!!!!!
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