All about Xeloda
Comments
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Oh, Birdlady, I am so very sorry to hear this news. I will be anxious to hear what your doctor tells you. Will hold good thoughts for you.My cold seems to be better this evening. Not coughing as much.
Joy
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Well, I got bad news at the onco on Thursday. The xeloda shot my liver enzymes to the moon! No wonder I felt so bad. Soooo , no more xeloda for me. I was sick in bed all day yesterday, but I already feel better today. They are going to test my liver enzymes twice a week for the next two weeks. I have no idea what comes next. I am praying that my Dr can come up with something that will help me without killing me. I have been on so many meds and nothing has worked. ...some even made me worse! I know my family is getting scared. I try to keep my happy face on so they don't worry but it is getting hard. I have always had a hard time with meds. Either they don't work or the se are really bad. I have lost 12 pounds, all of my hair, all eye lashes, and most of my eyebrows. I look like ET. I'm actually happy to get a two week break from treatment. Maybe I will feel better! Joy, I pray that the xeloda works well for you without those nasty ses. Best to all...
Birdlady
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Birdlady, You are such a trooper, I am just amazed. How tough to be dealing with another med that 's not working and is creating problems. I hope your oncology people can find a way to do treatment that your body can handle. I also hope you will keep in touch on the boards here as you decide what to do. One step at a time, right? Hugs, M
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Hello Birdlady,
I wish you a good hunt for a better drug. I was reading your previous posts, and noticed that both Taxol and Xeloda caused your liver enzyme to go through the roof. I'm sure this is a clue that will help your oncologist fight your cancer better. Good luck, and thank you for having shared your experience with us.
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hi bird lady. Sorry you've had such terrible se. What is your hormone status? Have they tested recently for changes? Maybe a hormone treatment is better for you? Sorry so many questions just trying to understand. It appears only two chemos have failed you at this point
Maureen
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Sorry xeloda has failed for you. I hope they find a treatment that suits you better soon.
kt
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MameMe,
So great to hear from you! Sorry it took me so long to respond. Guess I haven't been checking this thread often enough. I'm healthy now and back dancing and doing yoga. Just finished the first week of my 7th Xeloda cycle. My WBC and neutrophil levels were below normal but my MO said they were not low enough to worry or get off of Xeloda. I am having my scans after this cycle and she's thinking she will switch me to Palbo plus hormone therapy after the scans. Hoping that the two remaining active tumors will be inactive on my next scan.
My eye tumor keeps shrinking and my eyesight improved from 20/2200 to 20/70! With the pinhold view my vision is 20/30! I went to the Optometrist for a glasses prescription which should get me to pretty much normal vision. Not sure why my eye tumor is shrinking so slowly but at least the trajectory is in the right direction. How is your eye doing?
Hugs, Susan
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Birdlady, I thought I had written a response to your message, but it doesn't seem to be here now. I am just so sorry that you have had such a bad reaction. My thoughts and prayers will continue for you. Hope that your doctor will be able to find a treatment for you that will be successful.Susan, glad you are doing so well.
Thoughts go out to everyone dealing with their own personal problems.
Joy
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will be starting 36th cycle next week with a bit of progression. Fingers crossed for the bloodwork. Trust me, whatever the side effect, this is a doable chemo. And I am not having much fun..
Ebru
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Hi Ebru, haven't see you for a while. Well done on 36 cycles
I hope your progression is knocked back again & you continue to do well on XI'm only at the end of cycle 12 (yay, last day of meds for a week) It's going ok but I'm starting to feel really tired all the time. I guess it's the accumulation of 8 months of chemo...
kt
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I'm happy that you all are doing so well. Even though I have stopped taking the Xeloda, I still want to sleep a lot, and I have no appetite. Thank goodness for Ensure. I have to be off the Xeloda for two more weeks before we decide what is next. Hopefully the liver enzymes will come down on their own.
I don't know where I am going from here. There must be another med that can help me.
Blessings to all of you! Birdlady
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Birdlady........... I am sending you lots of (((((((((((((((((((((((((((((HUGS))))))))))))))))))))))))))))))))))))))))))) Thoughts and prayers continue for you. Glad that you feel up to keep in touch.Today, I am not feeling as good as I was. So far, none of the bad s/e. Just kind of feeling "BLAH" Very tired and sleepy. And, still coughing, but that is better.
JOY
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hi ladies,
I've been on xeloda 7/7 for a month now yet my tms cont to rise. I know cancer tx is ambiguous and vary from person to person however for those with xeloda success how long before tx xelodastarted killing the cancer? Please forgive me but I've failed 2 tx already so I'm becoming skeptical and afraid
Margie
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Hi Garlikbread,
I was on xeloda for 6 months with the markers going up & up till finally 6 weeks ago they've started going down. Took a while but it feels good that they've turned around.
I'm having a scan in 2 weeks anyway to see how things are as well.
I hope yours do a u turn soon too
kt
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thanks KT.
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hi KT
The fatigue develops geometrically, the longer you are on Xeloda. I discovered walking even s couple of blocks help gain strength & help the chemo gas out!!! Looking forward to the warmer days so I can be out again.
What I can suggest to all is 'one activity per day' . That helped me maintain my mood so far. And family & friends know and respect this. We need the sleep to help chemo work.
Hope we all can keep with this a loooooong time.
Hugs
Ebru
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Ebru, I have the same advice, based on a year of treatment: I maintain total control over my activity level, and take a day now and then to just rest, when needed. Most of the time I can do normal things at a slower pace without problems. But fatigue does sort of move in like a fogbank, and suddenly I am beat and my bed just looks like the BEST place to be.
I am walking most mornings with a lovely neighbor, and we chat and laugh and swap stories while we hustle along our road. I do feel that the walking helps, but I will skip it if I am at my weakest.
Susan! So good to hear your report! My vision has also improved and stabilized, which is a great outcome from both Taxol and Xeloda. I had some regression of bone and chest mets, and a bit of reduction in lung mets, also. I am officially retired from my job, and am so incredibly grateful to be able to dial in my activities to support my energy levels. I have 200% less stress in my life now.
I womder if mets can be from two different cancers, thus they respond differently to chemo? Just one way I think about the inconsistent response. I also wonder why chemo can work on mets if they didn't think it would work on the original tumors, in my case, two different incidences. But something is slowing the metastatic process down, most definitely.
LOVE that you are doing yoga and dancing! You have such a great point of view on living as well as possible.
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I hear you on pacing yourself Ebru & MameMe. I did Pilates this morning and now I'm wiped out. Will rest then maybe do a little housework later. I only work 2 days a week, but that's more than enough.
Birdlady, I hope they find a treatment that suits & deals to the mets. Hope you feel better soon.
Have a good day all (it's daytime here anyway!)
kt
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Well, after thinking Xeloda wasn't doing anything for me my CT scans came back as stable - good news! I was a bit concerned it wasn't as this is meant to be a 'gentle' chemo and some days it completely knocks me about so not sure how I'd fare on the not so gentle ones.
Here's to hoping it works ok for everyone else and the SEs stay manageable x
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Blondedoris. (love your username) So happy that you had some good results on the scans. I am just over my first cycle and I guess I did ok. S/e were manageable. Doctor was pleased that I seemed to be doing good. Waiting to start the 2nd cycle this coming Sunday. Hopefully, the next cycle will go as easy as the first one. I am still very tired, but do seem to have my appetite back and food tastes so good. It will be a couple months before they will do any scans to see what is going on. Remaining stable is good news.I have been thinking so much about Birdlady. Feel so bad that she had such a bad experience right at the beginning. Good thoughts still go out to you, Birdlady.
And, wishing good luck to everyone else. A tough road we all are on, but I plan on keeping going !
Joy
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Anyone find they're catching many colds on Xeloda? My mom had a bad cold in October and since then it seems that every time she starts a cycle the sniffles and cough come back. She'd been doing great on Xeloda for a year and in the past couple of months it seems that it's been hitting her harder between the "colds" and hand/foot issues that weren't a problem for her before. She has also been having some pain on and off in recent weeks. Hoping it's not progression but can't help but worry. Scan results Monday.
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My pills are 500 mgs. First treatment was 4 in the am and 3 in the pm. My week off kicked my butt! Doc lowered my dose to 2/2, so much easier!!! I am only in my 3rd cycle, 2 weeks on/1 week off.
I have H/F syndrome and mine seems to be getting worse and the fatigue. Also have a rash that I got from the first cycle, mainly chest and back. It started to spread down my limbs, he put me on prednisone pac. That helped, but I still have the rash on my chest.
I am also wondering if any of you abstain from the sun. I live in AZ and I love to garden, and a little color on the skin is nice too!
Very sorry for those of you that are not having luck with this drug. Praying that they can find something that works for you. My onc will try one more thing for me, if this doesn't work, before going to IV chemo, which I may refuse. But so far my TM's have come down almost 20 points with each cycle. They were only in the low 120's.
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I just finished cycle 23. I live in rainy Vancouver, BC, so it's not a problem in the winter but last summer I sought shades everywhere. I found that my skin darkened/tanned/burned very quickly in the sun. The rain finally stopped today
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Goldie, I believe I read somewhere to stay out of the sun, or apply sun protection. I think you can end up with extra freckles too! I've already got some- on my feet (2), thumb & I think there a few new ones on my face!
I haven't had a rash tho- just fatigue & HFS. Hope it resolves soon. I'm doing cycle 14 at the moment.
kt
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Ha ha on the freckles, I'm already loaded with them, had them all my life. What are these brown spots I hear about? I have one on the pad of one of my fingers, that I don't recall having, but its just a small dot, no bigger than the head of a pin.
I would just like to get a little color, so I'm not so pastie in the summer months. And it does say to stay out of the sun and use protection. Perhaps a little vain?
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I've been taking Xeloda for 1 1/2 years and I've definitely gotten additional brown spots on my skin since starting on this medication.
I've now got multiple spots on my palms and fingers, on my face including a dark one on the very tip of my nose and even inside my mouth! My dentist noticed it and remarked on it.
It's not a rash but rather like new freckles.
Kessala
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Hi Goldie - I thought when I read your last post that fitting in a little vanity here and there is not such a bad thing - breast cancer has a way of stripping us of most vanities - on and off over time - so finding little safe ways to indulge is probably good for us.
I do nose work training with my dog every Saturday and live on the northern Cal coast so it is usually cool - even in summer we rarely see temps above 70 - a couple of weeks ago it was 70 degrees and the air was heavy and muggy - both Oliver and me got overheated! and for the first time ever I had to leave class before it was over. I just completely wilted and know the Xeloda had something to do with it - it wasn't that hot and the mugginess made it uncomfortable but my reaction did not fit the circumstances.
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Wow Kessala, you are doing good! 3.5 years at stage IV? That's awesome! My onc told me that I should expect 2-3 more years. So I'm hopeful to get more! Are your brown spots very tiny? What is your dose?
Apack, I think just good ole fatigue from the X?
Ahhhh.....the gift that keeps on giving! Although I don't really consider it a GIFT! And I never refer to it as "MY" cancer.
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More than fatigue - felt more like heat stroke but our blessed cool weather is back. Does anyone know if there are antidepressant meds approved to take with Xeloda - I was taking lexapro before successfully but was told to stop when taking Xeloda. Yet, I have heard of women who are taking it.
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I responded in teh liver mets thread as well. I have been on Xeloda for almost 2 1/2 years. I was taking the antidepressant Celexa while on Xeloda. It was 20 mg tablest 2 per day. The generic was Citalopram HBR. I would ask again. They really helped me get out of my funk and I find that I might go back on them for a bit. I am having a bit of a hard time recovering from my recent brain surgery. Took a psychological toll on me. I was never told I couldn't take antidepressnats while on Xeloda.
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