All about Xeloda
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Only day 4, I know, but I can’t tell you how much better I feel than when I was on Verzenio. Almost normal from all the diarrhea and cramps (not having them anymore). My dose is high, 3500, but so far no SEs. It’s very early days so we will see
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Hi,
Hoping a few members can offer some feedback for me.
I have been on Xeloda since August 2017, with fairly decent response, so I am a "fan" of this drug. Scan next week, so crossing my fingers for some continued stability.
A friend of mine, with TNBC, has just recently found out her disease has spread to her liver. She is 3 years into her initial diagnosis, and has done Taxol and Carbo on two separate occasions. Her MO is recommending Xeloda as a next line treatment for her. She had initial spread to her chest wall, and nodes under her collar bone, and now to her liver. Because I have lung mets and am ER positive, I am just wondering if anyone has some experience with Xeloda and liver mets for TNBC. I can certainly speak to my experience, but hoping some of you, with a similar profile to my friend might chime in. My friend is a little worried, but does not like to do a lot of research and is not on BCO. Hoping I can provide her with some encouragement with some success stories out there.
Thanks,
Anna
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I have never been able to take x 12 hours apart. It takes me so long to get some food down in the morning. It’s usually 9-10 gots apart
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MissMonte-
I am not triple negative. I am Her 2+ but ER/PR negative. Xeloda wiped out my liver mets. It worked on them for over 5 years. It has a good record for getting rid of liver mets.
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Hi All,
I have to take 1000mg Metformin with my 2 main meals which are the ones when I take also the X.
Is it okay to mix these two drugs?
Will the X be effective anyway?
Thank you so much for your help!!
Miao
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Miomix- I’d check with a pharmacist. They know better than snyone
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thank you Leftfootforward! I appreciate it. I get allmy medications in the mail, so I never see a pharmacist in person.
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Miaomix-i take 1000mg Metformin twice daily and am on 3500 of Madame X. Ok to take together; no problem for me. I am pretty sure Madame X is working, but have not scanned yet. Best, MJH
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thanks MJH, happy to get your response. Best of luck with the next scan!
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Mamita, to alleviate body aches and pains I spray and rub Magnesium Oil in the sore areas,
Magnesium is a muscle relaxer and works instantly to relive the burning sensations of the lactic acid.
this is in addition to the fentanyl patch.
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Hi Leftfootforward,
Thanks for the feedback. Encouraging to hear about the track record with liver mets.
I read more than I post, and have read a lot of your posts. So great that you had the 5 years of success on Xeloda. I think from what I've read that you're back on for a second go around, so I am hoping for more success for you.
Anna
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I second the admiration that Anna expressed for Leftfoodforward and all the others that have had long runs on this drug. May it continue to work for many years to come! You give all of us great hope!
I have another question....last night, after only one day and a half on X, I went repeatedly to the bathroom, I mean A LOT
I had no idea my body could contain that much water....is this typical, or am I experiencing something atypical? I measured my blood sugar levels, thinking that I could have been in a diabetic state, but my reading was 107 at 3am
Thank you all
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question, i have used different creams but still getting major league pealing of skin on feet and hands. Was at foot doctor yesterday for help, he trimmed my toe nails and cleaned up some of the horrible peeling of skin. I use a combo of lubriderm and udderly smooth and in pain, well you know.
I also am using a soft compression glove that seems to help during the day
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There is nothing to cure it. Only lotions and such help in the moment. I use lotion, coconut oil and when I can, especially at night, I put on silicone socks after I lather up. Same with the hands, using latex gloves. Before I got the silicone socks, I used plastic bags. I put socks on over the silicone ones.
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Miaomix, when I first started X the pharmacy called me to talk about taking it. They said 10 hours separation was OK, nine hours not so much. Then when I went on vacation and had weird hours, the nurse told me I didn't need a full meal. A small snack would be fine. (I was having breakfast @ 10:30am and dinner @ 5:30pm so needed to take late at night). I had about a half a snack bag (maybe 100 calories) of doritos and didn't have any issues with X. [Probably should have been having bananas instead but them's the breaks]
Right now I take them at 7:00am with breakfast and 7:30pm with dinner (or so).
Mamita, I get weird pains in my legs but they come and go. They don't hang around. Sometimes I take some Advil to knock down the inflammation (in my hands too). Seems to help. I'm sorry if you're having real pain with this stuff.
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So tired today. I can be up fir about 2 hours before I need to lay down. I timed things around kid activities but I hate feeling like a bump on the couch. It’s only day 7 of 14. I hope to rebound a bit tomorrow.
I’m staring at the same 4 laundry baskets of undorted socks that have been there fir 2 weeks and only getting bigger. I know it’s ok to pass on things like this as I get all the kid stuff in but it just reminds me of what I should be doing. Ugh.
Xeloda fatigue is s real thing.
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thank you Pajim and Dianarose, im finding the no more than 10 hours in between, very doable. And knowing that I can snack, like this morning, instead of eatinga full meal without getting sick, is also very helpful.
Leftfootforward — I sympathize about the fatigue.....it's one of the worst aspects about cancer TX. Yesterday I had an appointment at the hospital for a dental issue, but by the time I came out I was so overwhelmed with fatigue, I could hardly walk 2 city blocks and I just started on this drug....
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LFF, you were doing so well before, is it worse this time around?
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Goldie- I think it’s a combo of things. I am older, my kids are older, and I’m taking it in combination with Tykerb again. My blood counts have been slowly decreasing as well so it could be anemia. I’d like to blame having to get up with the high schooler as that cuts into my sleep schedule.
I am doing well all things considered. Most around me can’t tell i am on Meds- still working, pta president etc.
Just having a cycle where I am very tired.
Thanks for asking.
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Leftfoot- it’s weird how every cycle seems to be different. I’m extremely tired this cycle. I had slept for 12 hours and then took a 2 hour nap. I could never work. Don’t know how you do it.
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LFF, how old are you, you have a high school age child, or did you mean you are older than you were 5 years ago? I will be 60 in August, and my avatar is a current picture of me. So I feel as tho I doing quite well!
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Goldie- I’m 45. My kids are almost 16, 13, 10 and 7.
When I was on this chemo combo before, I was 5 years younger and my kids were in elementary school or at home. So I didn’t have to get up as early or stay up as late.
Lots of life has happened and I am oh so appreciative that I’ve been around to experience it.
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My wife too metformin with her xeloda and the treatment was very effective.
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Yes, "Xeloda fatigue is a real thing," as leftfootforward said. When I feel the disappointment of not accomplishing as much as I had hoped to on a particular day, I remind myself that Xeloda is chemo, even if it is pills and not IV. What would people think if they knew this about me? That I am on chemo. I like to believe they would think that I'm a badass to be "acting normal" and accomplishing anything at all. I will say that you are, leftfootforward. PTA president, involved mom of four kids -- that's hard even for a "normal" person! I think we all need to pat each other on the back just for getting up and trudging on in whatever way we can. We are on chemo, for heaven's sake!
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LFF, you are so young! To be diagnosed with this horrible disease at such a young age and to know there are girls here even younger, in their 30's! What the hell is going on with this damned disease.
Shetland, we are all "bad asses"!
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boy did I experience the full effect of being on chemotherapy yesterday.....
It all started when my friend asked if I wanted to go bicycle riding, one of my favorite activities. Because of my back injuries, I can still somehow enjoy it, as it doesn't put a lot of pressure on my back. The activity makes me feel normal, like my old self again.
The first problem was a surprising flat tire I found when I went to pick up the bike. That meant I had to walk my heavy bike to the nearby bike store to get the front tire fixed.
Afterwards we biked from six to eigh avenue and then the back tire suddenly blew out because the guy at the bike store had pumped too much air in it. Again I had to walk my heavy bike couple blocks to the same bike store and had to wait till they replaced the tire and inner tube this time.
When we attempted to finally get to the river park, I started feeling a lot of aches and pains in my arms and legs, and I had to pull over. I suddenly felt faint and almost collapsed from the fatigue. I was panting, completely out of breath, my heart was racing a mile a minute. I thought that was going to be it...
I sat on a stoop and waited for 15 minutes till my breathing was normal again, and than gathered all my strength, I got on the bike and slowly got back home, where I immediately went to bed, and where I've been for the past 14 hours.
So...I've learned my lesson about making a physical inventory and not push myself past those limits.
This morning my whole body is aching from the lactic acid the cancer and probably the activities have been producing, and it's the most horrible feeling.
So yeah....I really admire all of you ladies with the strength to look after kids, husbands and jobs, you are amazing!
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Oh yea, we are all bad asses! And even bad asses need to practice compassion towards themselves. I try to remember when I'm feeling fatigued or sad about not being up to doing things or just the general chemo yuck to ask myself, what is the most compassionate thing I can do for myself right now? Sometimes it's just acknowleding and accepting what is. Mioamix, your wise words to take a physical inventory and not push limits is so important. And naps!
Goldie, I know how difficult it is to see our parents suffer. Really hard. My mom has dementia and is no longer able to find her words or carry on a conversation.
Leftfoot, you are amazing. And as a retired elementary principal, I know how hard a PTA president works and how it is often a thankless job. Everyone wants a strong PTA but managing and leading one is no small task, It requires lots of skill , grace and tact!
Like Shetland said, a pat on the back to us all.
I hope everyone finds something to enjoy this weekend. I'm going to see Ocean's 8 today and will finish the 5th Harry Potter book. I'm reading the series for the first time this year and I'm 61!
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I love you all.
Thank you for your understanding and for making me feel ok about my limitations.
This group is so special and invaluable to me.
Thank you
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Bad asses for sure! Left foot, good for you! Carrying that load with class and endurance. I am past the whole school volunteer phase, I'm turning 65 in August so my kids are older, but I sure do remember the time and work involved with being a volunteer. Your children must appreciate all that you do for them! If not now, they will later on. My "kids" often let me know how happy they are that I was so involved back then.
I am at a crossroads. I work as a special ed aide with high school students, a job that I love. I feel that the other aides have had to accomodate me because I can't do the whole job anymore, for instance, take the students out into the community (I need to stay back in the classroom to be near a bathroom). So I feel guilty. I will be eligible for Medicare, and let's face it, I don't know how much time I have left (hopefully a lot) and do I really want to spend it working? But.....that could put a financial strain on our budget. All these decisions. Any wisdom would be appreciated if any of you have had to make similar judgements. Thanks!
Donna
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Donna, I feel for you. I too worked with special ed, and it broke my heart when I had to quit. Wasn't because of cancer, I moved from MI to AZ. This was almost 20 years ago, I made good money, over $20 an hour and benefits. Called them "my kids", middle school age and severely impaired. Even took a few home on weekends and did respite care. Please don't feel guilty because you have to stay back from outings. As time goes on, the treatment should get easier. I also found that CBD or Hemp oil helps with the diarrhea. I've been on X for 3 years and no longer need to be "close" to a facility. I will say that it has taken a toll on my feet and hands, so not sure how that would dwell on going out. Wishing you a long run on X. Good luck to you my friend.
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