All about Xeloda
Comments
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veggie, I don't know? For me my side effects (HFS) are worst on my week off. Are you on 14/7 or 7/7? I'm sorry, I haven't been keeping up with this thread very well, so I don't know your history. My SE's do build, so maybe starting on Saturday would be your best bet? I'm on 7/7 and I start on Monday.
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14/7
2150 mg
mets to liver.
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Veggy, can't really advise you what day to start; however, if you want a "free" week-end, plan it so your last dose ends on a Thurs. or Friday for your 7 days off. Are you on 14/7 or 7/7 days on/off?
Good luck to you & keep those hands/feet lotioned up!
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Veggy.....I personally don't think it matters when you start or stop!
Everyone seems to have different symptoms & for me, I can't predict the symptoms, they're different each cycle!!
I'm on 3500mg, 14/7 & have been on it for 6 months.
Bone mets stable & liver mets nearly gone......:)
(((Hugs)))
Karen xxx0 -
Kazzie is right, the symptoms are different for me each time as well. This time my skin is actually hurting, in addition to the other symptoms - weird.
Kazzie ... so happy for you with bone and liver mets almost gone; helps me to remain hopeful.
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Veggie interesting question. I started it the minute I received it... On 8th cycle now, Se's not too bad. Since they build up cumulatively, it probably won't matter after a couple of cycles which day you are taking it or not, but that's my experience with it of course. Hope you stick with it loooong time with minimal se's..
Btw someone mentioned about headaches, yep I get them occasionally as well..
Hugs, Ebru0 -
My oncologist called me this evening. I'm going to start taking it on Monday. I'm just worrying about the hand-foot syndrome and some of the other side effects. Thanks for helping me through this.
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Hi Christy,
Yes, I wear it everyday. Check out sassy sleeves for a change up. They are fun and it gives you the option of plain or "sassy". As soon as I put one on, it totally changed my feelings about the look of the sleeve. Also have a tribute night time sleeve. Just switched from JOBST to Mediven. Very happy I did. found the seams would fall apart very quickly on the jobst lately ( less than a month) this new one is better for my fingers and hand( problem area for me). The night time one isn't perfect but I don't want to send it back for any alterations and be without for about 3weeks. So, other than some increased sensitivity in the fingertips and wrinkles like I've been in the bathtub too long, so far so good no peeling or swelling.
Veggy sorry you have had to come to this thread. I am not far ahead of you , started on July12, which was a Friday. Didn't think of what day I wanted to start. As soon as I got approved and returned from camping I started it. Hope others chime in about that. I'm also taking Tykerb as well. Guess I should update my signature....
Diane0 -
Hello ladies. I'm joining the Xeloda club. Will start the first dose tomorrow. I'm with you Veggie. I really, really, didn't want to be on this drug but nothing else is working right now. I'll be 14/7. Of course I'll have lots of questions along the way so I'm very glad to find all of you.
Blessings,
Sue
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Welcome milehighgirl! There's a wealth of knowledge on this tread and I've found it to be very helpful with dealing with the side effects. I read nearly all of it before beginning X and went out a bought a few of the lotions that were suggested.
Let us know how we can help you. My first advise is to keep the hands/feet lotioned and cool them off in cold water when they get heated up and relotion. In addition, I've found it to be helpful to keep the 2 daily doses as close to 12 hr. apart as possible. Always, always after you've eaten, never on an empty stomach.
Good luck, we are here.
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Well, I talked to my onc, and she let me go back to my 7/7 schedule. I start back on it Monday. The other good news is, I have NO MORE PAIN in my stomach and back which they said was caused by my liver tumor. I should get the results from my tumor markers next week.
Veggy: when I first started xeloda, I started on a Saturday. You may have cumulative effects so that may be a good day to start if you want easy weekends. Also, I had nausea with it, so I take nausea meds with the food just to get ahead of it and found that this helps. I think everyone is different.
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Good evening all. I have read through several hundred posts and they have provided terrific info. Since I'm just starting, I did take the anti-nausea a half hour before the first dose this morning. I wasn't sure if I needed to or not. I just took the second anti-nausea and will take the second dose in about 30-minutes.
For those of you doing the anti-nausea, did you wait to see if you had nausea as a side effect? Or, did you start taking it right away.
I am taking so much stuff during the day and I'd like to cut back wherever I can. If I don't need it, I'd rather not take it but not sure when to do so.
Thanks all.
Sue
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MIle High - for me I only take my anti-nausea once I start to feel even the slightest twinge of nausea. Luckily, Compazine has worked like a charm. Within half an hour I'm feeling better after taking it. nausea hasn't been too bad for me. Seems like it hits me the first few days starting the xeloda.
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Good to know RangerMom. I had stomach cramps and diarhhea in the night last night and a little bit of nausea so I took the Compazine. I had been taking the zofran but wanted to sleep. Funny stomach most of the day but I don't know if it's from the Xgeva or the Xeloda. Guess I'll find out tonight!
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MileHi,
For me and lots of others, the big D is very challenging. Since I went to the 7 day on/7 days off regimen, the D has been much more managable. Before while I was on the 14/7, I always had to have a bathroom close by bcuz it as so explosive. I am on my 8th round of X, the last one 7/7 and this one I'm currently on 7/7 and I really like it. My hands and feet are much, much better too! Your stomach will feel funny, maybe even a loss of appetite, or feeling of bloating and being uncomfortable. I haven't found anything yet that works for that. My stomach feels yucky most of the time, especially at bedtime. Oh well, all in all, this X has been very good for me as far as quality of life and i hope to be on it for a while longer. Keep us posted,
Linda
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Hi milehighgirl and veggy - I just have to add that I have been on the Xeloda for over a year now and do not have the nausea but do deal with a lot of stomach gas. Some nights it is hard to sleep so my onc put me on a stomach pill called raberprazole to help alleviate the gas and gas pain. Sincerely hope the Xeloda works for you girls it has been continuously bringing my tumor markers down and hope it stays that way.
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I was on Xeloda for 2 mos had severe constiation, and hand/ foot to extreme, also had my dosage reduced. I could not taste normally, water tasted metallic, I know each person reacts differently, so I am sure that all will not get my SE's usually it is the opposite of constipation ..My stomach felt bad almost every day..
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Hi everyone, I've been off the site for a little while. Just too tired after trying to work a full day.
Im on my off week of round 4 (14/7). the hand foot syndrome is starting to get bad, and the big D started this week. It's like water, is that a normal se? i drink constantly so dehydration shouldn't be an issue, but its been5 days now. I think it starts to get better, then I eat and the cycle starts again. I start round 5 on Friday, I'm hoping it resolves by then. If X is working, I can deal with the se's, bu I don't want to push it to where I get sick.
Has anyone experienced leakage of fluid from their toes? On week 2 of this last round, my toes swelled, and everytime I touched my big toe, fluid would come out. It was dry if I was just looking at it, but when it was touched, it was like i had water on my toe. weird,right?
Tomorrow I go to MO, more bloodwork, and she"ll probably order PET scan. As of now, I believe it still is only local/regional recurrrence. I know most of you are stage IV with organ mets, so are there any out there like me who are not to that progression yet. My MO wants to treat for a cure, not just paliative. If scan comes back no progression, she wants breast surgeon to remove the 2-3 tumors that have come up in my skin.
for those of you who are also relatively new, try not to be afraid of the se's. Even though my hands and feet hurt, it's much better than the IV infusions of the other chemo I've had.
I'll update after my app tomorrow.
Lori
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Slowloris ... I'm glad you are seeing your MO. My understanding is when the big "D" and hand/foot get to the extreme you are saying it is, X should be stopped until it resolves; then, you are put on a reduced dose and sometimes 7/7 days on/off. The idea is not to get toxic because then it sets you back more. It was explained to me X can be very effective and a variety of doses, so having a reduced dose does not mean it has failed, just your metabolism needs an adjustment. Let us know what your MO says and please make sure they are fully aware of what's going on with you.
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well, the big D is resolving after only 1 dose of imodium, but also bc i'm on my off week. MO wants me to wait until atleast monday to start new round (tomorrow was to be 1st day of round 5). she dropped dosage down to 1500 x 2. trying to schedule PET scan and if good, then more surgery, so I may be off X for a while. I have to be off it atleast 2 wks before they would do the surgery. Good news , we both feel that atleast 1 of the tumors has shrunk. She seems very optomistic that if truly a local recurrence, than cure is still a possibility. For now, she is treating curatively, not paliatively (sp). Keep fingers crossed for a good PET scan.
I hope all of you are doing well with your se's. I pray for all of you, and that a cure for this beast is found soon.
Beautiful day today, almost fall like. I think I'll open windows, do some light cleaning, then take a nice walk. and then nap
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Thank you all for your updates. It really helps in trying to figure out if we're experiencing normal se's. Rangermom, I'm sorry to hear about the funny stomach but last night I had a rough stomach night so again, I know it's semi-normal. I've also had a few early morning bouts of nausea. Thought for sure today was the day breakfast was going to return on me but I was able to keep it at bay until leaving for work. Today is day 7 of the first go round of 14/7. Other than the weird stomach and not much appetite for fear of getting sick, it hasn't been too terribly bad. Guess we just keep at it!
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I hate this chemo. Woke up sick. Couldn't eat or drink. Tried to make scrambled eggs. Took one look and ran to the bathroom, dry heaving. Ended up at getting fluids and meds. Still can't eat and I don't want to take the xeloda. I've been sleeping all afternoon.
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veggy, so sorry to hear you are having problems with taking this chemo. Regarding the nausea and vomiting, have you been taking it immediately after eating? Also, have you been spacing the doses out to as close to 12 hr. as possible? I've found both make a differerence. I have also found a probiotic, such as yogurt in between meals makes a difference. Hope you are feeling better.
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Been doing both.
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hi. i'm starting my first cycle on monday. I've been on Letrazole since my chemo last year but its stopped working.The taxotare gave me mild hand and foot syndrome and I found that Aqueous cream was good for me. I have mets in lungs,liver and bones. I'm really scared in case it doesnt work for me.
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What about zofran; that takes away any nausea I've had. Some say they take it 1 hr before dosing.
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been taking the zofran and compazine. The onc took me off the xeloday until I see her physician assisant on Tuesday. I'm sipping on gingerale, orange juice and nibbling on crackers. so far so good.
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That sucks veggie. Hoping the break helps. Hard enough to need new treatment and then to have a rough time with it stinks!
I don't think you are alone though. I know of three ladies in my support group who have not been able to tolerate it. They have all moved on to other things that were effective for them.
Popsicles, jello, herbal teas, all good things in my book. I would stay away from the orange juice though, too acidic. If you want flavour add syrup like grenadine instead.
Healing thoughts over the weekend and best to you on Tuesday.
Diane0 -
Had 3 rounds of Xeloda - had to be reduced everytime. SE's different every time. Hand/foot really bad. Just had a CT scan today to check progress - not expecting much this time. Should get the results Monday.
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MamaPeg2, here's hoping that your CT scan shows that Xeloda is working, however slight, seeing that you have only had 3 rounds of it so far. Yes, the SE's are different each time and I am on round 13 now and the Hand/foot SE is the worst, although that seems to be getting under control even though only a little bit. Thinking of you and please let us know your results. We will all be keeping our fingers crossed.
Blessings
Mandy
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