All about Xeloda
Comments
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LuvRVing - I had one blister, I think my second round, on one toe and it resolved quickly. I think it was due to friction. I haven't had any others yet. I hope your feet feel better soon!
I did have some peeling on one toe yesterday, and there's a little more peeling around the toes today. Oh, and they're turning an even darker shade of purple. But, they don't hurt too much more so maybe they won't get too much worse? I did manage to walk a mile and a half when we took the kids to a national park on Sat. and then I had to sit for awhile because my feet hurt so much, but it didn't make them worse overall.
Here's something new: I have two red bumps on my arm that seem sort of like a bug bites, but no itching at all. I found them last night and they're still there. Same size, still not itching or hurting. So strange the things that seem to pop up. I don't want to blame every weird thing on X, but it's tempting. lol It definitely kicked my butt today for some reason. I felt so fatigued and nauseous, then felt better in the evening. I hate not knowing how each day will be. My care manager from my ins. co recommended more hydration for the HFS, so I'm hoping it'll help with all my side effects!
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Voice question: I'm starting Xeloda tomorrow. Love singing in a choir. Anyone had voice problems with X?
Thanks
Jeannie
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Cynthia, I've also had the random red bumps - 2 on my chest which seem to be fading quickly.
Jac, no probs with my voice and haven't heard of that as a common SE. Good luck with the X - lots of top tips here!
Lx0 -
welcome Jac this is a great bunch of women lots of info and tips.yeah i'm finally off antibiotics after 8 months so glad. my feet are a little purple today and sore i have what looks like a paper cut on my finger think i got it foem my coffee cups lid waiting for rad onc to call for my mask fitting. sending love and light to all!
Chris
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Maybe another SE (or I'm just getting old and my Caesarians are catching up with me although doubt it as kids are 12 &15!)
I used to occasionally get a bit of stress incontinence when I coughed unexpectedly. I find this appears to be increasing whether my abdomen is stressed or not.
Guess I'm just trying to blame everything on Vit X!
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I don't know Alesta, I have found myself on certain days to need to wear a pad just in case. Getting to the bathroom is not something to delay on those days. I think this stuff definitely contributes but Ive ha d this problem on some other treatments occasionally as well.
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Ive been starting to have that same issue, but did not equate it to the X. Hmmmm, something to think about.
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I have the red bumps on my hands. They get better on my week off. I'm surprised how the symptoms come and go. Yesterday. I felt awful, today better. I never know how I will feel from one day to the next. Have had a couple of small blisters that peeled also.
Welcome Jac, no voice problems.0 -
My mother said this last cycle, at the end she had a little bit of burning in her urethra. She feels that her whole body feels a little "raw" at the end of her second "on" week. Anyone else experiene this? Could be related to the leakage?
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Glad to know I'm not the only one to get the bumps. lol I thought I remembered others posting about them, but couldn't find the posts. They are a tad smaller today.
My eyes have quit burning, just like that, after 2 days.
I do piddle myself sometimes, but I have to have a very full bladder and then cough or sneeze. I know when I originally had chemo, it definitely made it worse, I think due to irritation of the bladder/urethra. I wouldn't be surprised if X has the same effect, although I haven't noticed it being any worse than usual. Actually, if I remember right, the Arimidex really made it bad. I know something did for awhile not that long ago.
Hands are worse today and were slightly swollen when I woke up. I'm trying to drink more water.
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I seem to get the red bumps the last couple of days of my on weeks. They itch like crazy. I had these with another medication also. I notice that I get the itching first then the next time I look theres a red bump that looks almost like a bug bite. My onc gave me an allergy med and steroid ointment. They seem to help keep the itching down. Today is my last day of cycle 3 so they will start to go away.
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Hi ladies!!
This is my first post on BCO, but I have been reading on here for several months since my mom was diagnosed Stage IV from the get go in April. She just started her fourth round of X and is noticing quite a bit of stuffy nose and congestion. She says she feels like she constantly needs to clear her throat. We're just a little concerned since she had a horrible cough due to lung mets when she was first diagnosed. She was on oxygen for about a month but was able to go off a few weeks ago. She has continued to monitor her oxygen levels and they are still in the 92-95 range so that is good. Any of you other ladies experience the runny nose/congestion as a SE?
Thanks again!! I've really appreciated all the info I've gleaned from you wonderful, courageous ladies!!!
Jackie (for my mom)
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Welcome, Jackie! Sorry you need to be here for your mom, but as you've seen there is lots of great advice and compassion here.
I have been on Xeloda for 2 rounds and I have not experienced congestion. Actually, I've had an occasional runny nose but not what I would call congestion.
It sounds like your mom is doing well on Xeloda and her situation is improving. That is really good news and I hope that things continue in a positive direction. It gives us all hope to hear success stories.
Hugs to you and your mom,
Michelle
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Jackie, welcome. I have had congestion and cough. I notice it most in my second week. She might want to try an allergy pill. Feels similar to sinus infection, other times it's runny. I hope your mom feels better soon.
Renee0 -
Thanks for your responses to my voice question.
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Hi Ladies - I have been on Xeloda since September 2011 and we are going to Alaska for a 2 week vacation. My oncologist said I could go off of X for 6 weeks, so I will be off for 4 weeks before we leave so I can get my hand and foot syndrome cleared up and maybe get some stamina back. I took my last X yesterday morning. I have been so tired, I have had that kind of fatigue but it usually only lasts a day then I am feeling better but this started on Wednesday and was not better yesterday so I called the oncos office to see if I could skip the last dose or if they had any suggestions on what I could do to feel better. He said I could skip the dose and should be feeling better in about 24 hours. I do feel better today than yesterday that is for sure. I am on the schedule of 7 days on, 7 off, taking 1500 mg, AM and 1000 mg, PM.
When I get back in September, I am going to start the same schedule but will take 1500 mg AM and 1500 mg, PM for a couple of months then back off to the 1000 mg PM. We found that I do better with side effects at that dose. My question is when you started back up how long before the side effects started again. My side effects when I first started it really started about 2 months after being on a dose of 2000 mg AM and 2000 mg PM so it took a little while. I know this is a long post and thank you for taking the time to read and respond to it.
I also know we all respond differently but it helps to know what others have experienced. I also wonder about being off for 6 weeks, I am glad to be off and will enjoy the time off but also concerned that the cancer may spread in that time. My onco said not to worry. I asked if it could spread that fast and he said it could, but it was unlikely that it would, so go and have a good time. I will have markers done the first part of August, along with my Zometa and the week we get back I will have scans, markers, doctors appointment and Zometa again. Am I crazy to be worrying about this, should I just say to heck with it, go have a good time and worry about it tomorrow
. I know you understand that thinking and worrying about it can drive you crazy.0 -
X Divas! I have been absent..it all started with the epic road trip to Pittsburgh, WITH my dogs. I live in Texas, so am used to heat--but I got to Pittsburgh, and it was 100 degrees there, and no one has air conditioning! I spent an uncomfortable night, and took my son to Home Depot and treated him to a window air conditioner the next day. After that it was fine but I was sure happy to be home to my fenced yard, air-conditioned house, and my famous waterbed with a featherbed on top, goosedown comforter and feather pillows.....I used to be an air traffic controller and work shifts around the clock, so figured out early on that for me, luxury bedding was not a luxury, but a necesssity--when I had to sleep, I had to sleep--at work it was an absolute requirement that I be present, fully conscious and not sleep-deprived. So after thirty years of this kind of thinking, when I go away on a trip I always appreciate my bed when I get home.
I have been off Xeloda since the third week of April. I still have days when I don't move from the recliner, but I also have days when I feel almost normal...also adjusting after the huge surgery last September when much of my sternum was removed--getting to the stage where I am wondering every day if it will always hurt like this. I think it is still improving, just s-l-o-w-l-y. I shouldn't be complaining as I have had two sets of clean scans and another coming up in August. I still get Zometa once every three months, and it makes me lethargic for a couple of days (I think), but overall my health is steadily improving, my appetite is back most days, I am doing well. There is MUCH life after Xeloda, it turns out!
For those considering hair loss again and scarves--one word: FEDORA. I wore them the whole time I was bald, with power suits (I was still working then) and big earrings so people would know I am female. Go to Target or WalMart and look in the young men's section--those seem to be perfectly sized to fit an adult woman's (hairless) head--and they are so flattering!! And not expensive, at all. Just a thought.
Hope all have easy weeks on with minimal side effects!
Sue
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I can't wait to get off this stuff....my eyes are killing me. They are fine when I get up in the mornings then they get progressively drier and drier and by the evening my left eye is blurry. Drops all day long...drops, drops, drops...gel...gel...gel...ointment at night. Since October I've looked like I cry all day long. This October I will get to stop Xeloda if I'm still NED.....and I guess if I'm no longer NED, then too. I hate hating a drug that has been so good to me. Whine over.
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Another bloody X SE?.
Week off. Due to see every damn onc under the sun tomorrow.
Have developed chest pain in the am for last couple of days. Taking omeprazole in case it's gut, then take ibuprofen, then take the steroids (and man am I bloating with fluid retention on these suckers)
Bp and pulse check out ok and in a few mins I should be ok to get up. Just a bit scary and I'm damned if im spending the first sunny days in 4 weeks in an ER!
I know it's supposed to be one of those throw you hands up and rush to ER but I've had it in the am for a couple of days now and still here..0 -
It's hard reading about so many of you struggling with a drug that has been so good to me - I still cant believe that my baby dose of 2000 mg got me to stable after three rounds. I'm now on 1500 twice a day; it's only the start of Day 3 of this new dose. I have no clue if I'll be able to handle this as well as my baby one so I still have my immodium at the ready and lotion everywhere.
Here's a story only you ladies here can appreciate: my best friend had a birthday party at a local water park scheduled for her newly-minted 12 year old. I wasn't planning to go as my kids are at "Camp Grandma" at the Jersey Shore for a month but late Friday she called to say her boyfriend (who was supposed to be the other party parent) had a family emergency and couldn't go. Her brother had plans to go to DC to see his girlfriend (who gave up a job posting in Ethiopia to move back to the US for him) and while he would cancel his plans, she didn't want him to. So I loaded up and we spent a really fun day out - the kids were rather scandalized to see us waving at them from the lines waiting to get on water slides (well, not my friend's daughter - she is used to us - but there was much eye-rolling at our antics in front of her friends). It was a great day - sunny but not too hot with some high clouds and the park has lots of trees so tbere was plenty of shade. The cold water felt good on my feet and I cant say enough good things about my ugly-but-comfy Bass water sandals. I had my immodium with me at all times as well as my evening dose of Vitamin X and consistently lotioned my hands and feet because of the chlorine. Can you guess what I forgot to use as consistently?
So I am a slightly alarming shade of bright pink as I type...but my hands and feet look wonderful!!! And it was so much fun
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Dormouse: Loved your story!! Glad you had such a great time...even if you are a little lobster-like at the moment.
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Alesta - I'm sorry to hear you're dealing with chest pains. I agree with you, if it hasn't killed you yet, it's probably not going to. I have mild heart issues and it's hard not to panic sometimes and think a weird pain or symptom is more than it is. I usually wait it out and figure if it isn't getting worse, then I'm probably ok but it can be disconcerting nonetheless.
I wonder if your heart is reacting to the bloating. My heart hates anything to encroach on it's space and overreacts when I'm bloated from X. I usually end up having to try to sleep sitting up to keep as much pressure as possible away from my heart. I've also had chest pains from trapped gas. I don't know how gas can travel all over the body like that, but I've had it give me shoulder pain, back pain, & chest pain and it's more painful than it has any right to be. I take a lot of generic Gas X now to help with that and the bloating because I'm not a "natural" burper. It takes a lot for me to burp. Very inconvenient. lol
I hope you get this resolved quickly and don't end up in the ER. That wouldn't be fair when you're finally have nice weather. Our weather is back to the triple digits, ugh, and I'm not loving it but I do enjoy the sunshine. It just makes everything seem better!
Cynthia
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Alesta, I second the gas issue. I get chest pain that radiates up my left shoulder from gas and X seems to cause a lot of it. I use gas-x also, and it seems to help. Here's hoping that your pain is just from a big bag of wind.
Pat
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I don't know if it's the X or the taxotere but in the last few weeks I have had my feet/ ankles swell off and on. I mentioned it to the ONC a few weeks ago as well as the nurses and they said it was probably due to the heat and to keep them elevated. in the last week or so I have noticed they are swelling alot more plus when I got on the scale it says I have gained 8lbs. I don't think I've gained that much weight because I don't eat that much, I think I'm retaining fluid. Im going to really monitor the swelling this week and if they don't go down or get worse I'm going to talk to my ONC and see what I can do to get rid of this fluid.
Do you ladies have any suggestions?0 -
My ankle and foot have been swollen since starting X. In fact the first day my left foot ballooned. Onc had me ultrasounded for DVT. Negative. She agrees it the X but doesn't want to do any meds for it. I'm going to ask again Tues when I see her. Tired of trying to walk around in a sandal that doesn't quite fit.
My ankle has always swelled in the heat but this is much more.0 -
I'm sitting here soaking my week-old Xeloda foot blisters in a bucket of cool water with antibacterial soap. I went into the lake today (we had a crowd for the day) and sand got into the inside of the blister where it had burst (just below my second and third toes). I'm hoping the sand soaks away because I sure don't want to leave it there. These darn things hurt and I'm ready for them to heal! Plus my lips have been peeling for a month. I start X again on Tuesday and I'm hoping the H/F syndrome goes away. My dose has been reduced to 1000 mg x 2. I don't have any GI problems, thankfully.
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Is anyone taking xeloda in combination with an AI? I had great results with the first round and by the second round the invasive ductal lumps had gone away. They are only 5%er and -PR her2-. But the invasive lobular which is 95%er & 50% pr is still there and doesn't seem to be moving after 3rd round. I could be jumping the gun and it may take longer for that one but seems like adding an AI might help. Just a thought.
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Had my check up today. Tumor markers still dropping! Yea!!!
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Frapp - that's great.
LuvRVing - I hope your feet are better! That sounds miserable. My feet have been peeling for a few days now and today my hands started. Nothing seems to help. I start back on Friday so they will probably keep on peeling. I hope it doesn't get too bad.
My gp gave me samples of Nexium to try to see if it helps with the bloating. His theory is that it's the acid reflux causing the bloating. He could be right because it does seem as if the reflux has been worse lately. I haven't started taking them yet. I hate taking new medications. You would think I'd be over that by now. lol
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Dormouse, that sounds a great trip. Can I ask why, if the lower dose of Xeloda was working, did your doctor increase your dosage? Just curious as I am also on 2000 a day and have done seven cycles.
Laurie, at least when you have something wrong with you, as a nurse you can take an educated guess as to what is causing it. Us non-medics have wild imaginings, often with no basis.
Beautiful day here in Bonn, the quilt group is coming round, ice, drinks and coffee at the ready - I'm going to have a good day, hope you all do too.
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