All about Xeloda
Comments
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Hello Tweety, I have taken the same chemos you have. None of them worked to stop my triple negative disease. My onc gave me the opiton of stopping therapy or trying Xeloda. How ironic, as when I advised my onc team, four months ago, that I was going to stop treatment, they acted like I had totally lost my mind, so I agreed to try Carbo-Gemzar. It did nothing for me except lower all my counts so badly, I had to have blood transfusions and self-inject Neupogen (awful stuff!) ten days a month at home.
If it were not for my grandchildren, I would most likely stop therapy and let the disease take it's course. I take care of my grandchildren every day after school and often part of weekends. We are very, very close. I have to do this for them. I hope it helps.
Anyway, CVS speciality pharamacy called me today to set up delivery of my first doses on Mon. I will start Tuesday a.m. I will check-in with you to see how you are doing. I am also a nervous wreck. I just took an extra prozac as I just cannot stop thinking about how bad my nurse pract. told me the hand/foot syndrome can get. Best of luck to both of us!
Sherry
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Thanks for the advice OBXK - I often only feel like eating ice cream! I will definitely not eat it in the a.m. when I start the med.
Sherry
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Hello Ranger Mom - I agree. I left work and will not go back. I am spending every minute I can with family.
Sherry
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I believe i am so anxious about the side effects as my onc nurse usually down plays SEs. This time she actually demonstrated how difficult walking can be with the hand/foot deal! I just can't imagine my feet and hands being a mess at the same time. I know, chemo affects each person differently - I just have to remember that, but being one of the people who experience almost every side effect listed for every chemo I have tried, I am a bit apprehensive about this one. I am also having a difficult time being optimistic about Xeloda as my Onc. does not have much hope that it will work to stop my aggressive disease. He has been optimistic all through treatment - until now...Isn't it strange how it all works out...I was not as scared to stop treatment when I made the decision to do so four months ago...but now that profs. are suggesting I stop, I am scared....Thanks for listening....
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Hi Reality, I have been on Xeloda for 7 rounds and was due to start round 8 last Wednesday. I take 1000mg in the morning and 15000mg in the evening. My first round was 2000mg in the morning and 2000mg in the evening. My schedule is 14 days on and 7 days off. I got constipated and felt a little nausea during the first round, and the second round, was a little worse with just a little bit of tingling in my feet. My onc reduced the dosage to 1500mg in the morning and 1500mg in the evening. My feet slowly got worse but still bearable. I changed shoes and ensured that I had cotton socks on. Lots of Sorbolene and VItamine E cream seemed to help. I like to walk and if I walk too much, then my feet feel like they are burning later on, so I walk often and for shorter periods. I have got a couple of blisters and some cracking/splitting of skin on my feet, but my tummy problems have subsided (I did have terrible diahrrea and bloating during round 3 to round 6). Round 7 my dosage was reduced to 1000mg in the morning and 15000mg in the evening. This has helped immensely with the side effects, and my feet have not deteriorated this round. So the oncologist advised me to have one to two weeks break to give my feet time to heal and then go back to 1000mg in the morning and 15000mg in the evening. The main thing is that the scans showed shrinking of most of my tumors especially in the liver and brain as well as the lungs, so I think that it is a good trade off. I say, give X a go. Everyone is different with side effects. It may take a while for the right dosage. My hands are extremely dry and the skin is flaking, but I try not to put them in water etc, but use rubber gloves instead. Lots of cream. It is a gentle Chemotherapy drug (the gentlest one that I have been on) and definitely worth while to give it a go. Good luck
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Mandymoo - I am sending my sincere thanks for your honesty and encouragement. I cannot begin to thank you enough for taking the time to send such a detailed response. My best to you, also.
Sherry
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Ranger Mom - I am working my way through past posts and just read your March posting about people asking if its "real chemo" because it's taken at home. Some of my family members thought it was a sign that I was doing better since I can do chemo myself. Haven't had the energy or heart to tell them I am taking "home chemo" as infusion chemo did not work and that this is a last resort as far as treatment goes...
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Chickadee - just read your March post about recliner. I did the same thing! I spent a lot of time in bed when I did AC/Taxol. I decided I needed to make a comfy spot for myself other than bed. I live in a small cottage that has a screened-in porch. I have made a "me" spot there for the summer.
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Ok I kind of have weird question...I was always constipated on other chemos...not this time...did any of u notice change in bowel color on xeloda?
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I have another question ... I read somewhere it was a good idea to get a pedicure before beginning Xeloda to get all the dead skin off. Anyone had that experience? Also, I already have a few dry nails on my foot (one foot only, weird) with lines, etc. One has been cracked for years and causes me no problems but I wonder what effect Xeloda has on nails. Do they turn black or fall off?
Thanks for your exper. Mandymo ...
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I have been trying to work outside some since the weather warmed so haven't been on the board. I have so many pages to read and catch up and see lots of new faces too.
I have a question about when you take your Xeloda. When you come back to a thread it always takes you to where you last read/posted and one of the new ladies said she had read that
1. You take your Xeloda 12 hours apart and
2. You take it 30 minutes after you eat.
I take mine during my meal - did that so it wouldn't be so tough on a sensitive stomach and was never told that it needed to be 12 hours apart.
How do all of you take your Xeloda. On my visit 2 weeks ago, she reduced my dosage to 4000mgs. a day. Had terrible blisters on my lower lip and I stopped the Xeloda as soon as my mouth started getting sore but the blisters came anyway.
Anxious to read what you have to say about when/how you take your Xeloda.
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I try to stick to 12 hours and make sure I've eaten something within 15 or 30 minutes.
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I do the same as Chickadee.
Joy
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Tweetyb422, I noticed colour change as well. Much lighter in colour.... hope that helps
Xeloda should be taken on a full stomach, so after you have eaten or within the last 30 minutes of eating. Also with the 12 hour rule, unless you have a late evening meal, then the gap would probably be 10 hours. For example, morning dose after breakfast at 8am and evening dose at 6pm after dinner. I read it somewhere, I think on the Xeloda website that it is OK to have a 10 hour gap.
Here is a link explaining it - http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Individualdrugs/Capecitabine.aspx
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Thanks mandymoo, when I asked my dr he said that doesn't normally happen....I guess everyone is different. I always have weird side effects. I've had yucky ones so far, was to,d to take a day off then reduce dose.
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Boy, miss a few days, miss a lot. I was on a beach retreat apr 14 to the 20th through little pink houses of hope a foundation for breast cancer survivors and their families. It was a pure week of heaven for me and my sweetheart. Just started my 3rd round of xeloda. How soon did you all get your first scan after how many treatments to see if its working?
Also - to answer a question regarding those nasty BM's, yes, mine changed color and smell and i have consistently had loose BMs with mild D ever since being on this med. But nothing bad and nothing I can't handle. Just some mild nausea and occassionaly some eye drainage. All in all, this is a very easy tolterated chemo.
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My onc wants me to take 1000 mg Xeloda twice a day with tykerb, Herceptin and Afinitor if ins approves. I have been reading this thread and most of you are on much higher dosage. Should I ask onc to increase dosage? My mets are growing rapidly with TMs doubling every two weeks. I am concerned that my dosing is too low. I have not started anything yet as I am still waiting for ins to approve while the cancer continues to grow:(.
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formygirls ... I believe the dose is based on ht and wt ... would think too high a dose would cause more side effects & then perhaps you wouldn't be able to tolerate it.
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formygirls ... so sorry you are exper. progression, I understand how scarey that is ... going through it myself. Waiting to hear if insur. approves and how much the prescription plan will cover (if I can afford the balance!). Meanwhile, no tx - scarey. Hang in there.
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Thanks to all for sharing SE info. I have been nesting all weekend in preparation for Tues., my first day of X. I cleaned, organized, stocked-up on groceries, cat food, litter, gas x, udder cream, ibuproben and compazine. I am ready to go for it! Just edited this post as I forgot a very important item: Immodium. My onc told me to totally disregard immodium directions as I can twice as many as they prescribe on box and be just fine.
Sherry
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I just tried to take my 6th dose and got down my second pill when I started getting sick. I took anti-naseau med at 5:30, but was still feeling queasy off and on. Do i just take my dose tomorrow, should I call my onc? I hope this isn't it for Xeloda!
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Family5 - talk to your doctor, but don't give up yet on Xeloda. The nausea might be temporary and not something you will experience every time.
I had some pretty bad nausea during my first cycle. When I started my second cycle, I was prepared to be miserable, but ended up without any nausea at all. On subsequent cycles it has popped up on occasion, but really hasn't been an issue. Just occasional queasiness with the morning dose that is very easy to manage.
You might want to experiment with what and when you eat to see if that helps. I eat a few pretzels or crackers at the first sign of nausea and that seems to calm things down. I swallow the pills with ginger-lemon tea, and that may help too.0 -
Family5 - I am so sorry you had that experience. I take a Zofran at the same time as I take my pills.
Like Marty, I keep Goldfish crackers on hand, if I feel queasy.
I hope you can keep your next dose down.0 -
I'm taking zofran too, so far it's working...I wonder how long I can keep taking it
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Mandymoo, thanks for the link. Says Xeloda should be taken 8 hours apart, 10-12 if possible. I guess taking the Xeloda near the end of my meal is ok as it needs the food to be broken down and it just says take it within 30 minutes of a meal. It has work well for me taking it during the meal and havent had lots of stomach issues. Take my Xeloda 8-10 hours apart will be more careful in staying in that time frame. Nothing about how far apart the medicine should be taken was never addressed. My medicine is mailed to me from the "Special Needs" Pharmacy at the hospital in the Cancer Center. There was never any instructions, just the medicine and the hours of the pharmacy.
I haven't found any difference in my BM on Xeloda - still have trouble with constipation on this drug also. Today was day 12 and I a really having the redness and burning of my feet. Mouth is getting sore and will see how sore it is tomorrow morning before I take another dose.
For the nausea my DIL brought me some pure ginger drops and I put 3 drops in some ginger ale. It has helped my nausea without having to go the stronger nausea meds all the time.
Formygirls, I guess there is all kinds of combinations with Xeloda; I have been here over a year now and am always amazed at the combination of chemo drugs they use.
Late and I get to go tomorow and get the $1000.00 crown put on - then I need to smile real big where ever I go so everyone notices that crown !!
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I was nauseous exactly once from Xeloda. I take mine about 12 hours apart. In the morning about 7am after a big glass of orange juice and a small bowl of oatmeal. In the evening after supper.
I just had lab work done. My CMP was all in the normal range! First time in years! My CBC wasn't totally awful either, I'm still low on everything thing, but not too bad for me. Now if only my CA 27.29 continues to show improvement/stability I'll be doing the happy dance!
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Hi everyone!
Just finished the fist week of my third x cycle (14/7):
-12 hours apart, 30 min after food, a bite of fruit/snacks when taking it
-3000mg daily dose
- not consuming dairy products with lean meat, maybe separately as snacks. NO MILK (onc said) ever
- starch & carbs helps nausia & heartburn. During 1st cycle, forgot it was real chemo, didn't eat enough, sufferred greatly on heartburn & stomache ache. Juicing 1/2 glass of fresh potatoes (tastes ok) with empty stomach 3 times a day healed everything including big d in 3 days, was able to complete the entire cycle! No vomitting so far. BM's Ok, consume lots of fruit, dried & fresh & juicing.
- eat 5-6 portions a day regularly, empty stomach hates x in my case.
- zofran not regularly, just when I feel signs of things getting out of control, major constipator itself.
- Hfs, woke up on the second week of cycle 2 with burning feet, immediately henna-dyed feet soles & toes and hand soles & inner of fingers, immediate relief for me (was MO's advice, medically proven) info on how to apply on the internet. Just a bit tingling left ever since. Not even regularly creaming feet & hands just at night.
- as with all chemos, drink water generously regularly..
- mouth sores available not as bad as was with Taxotere (MO suggested carbonate?) if it gets worse, not used it yet. Red berries helped when was on tax??
- wake up late morning, have regular naps 2-3 hours daily, so no work for me.
- real chemo, causes chemo brain to me.
- was on femara & lupron (not working aline for me) during first cycle, then MO decided with x alone (with monthy Zometa continues of course).
- a pack of roasted chickpeas with me at all times help wonders with stomach, maybe available at Turkish-related markets.
- had blisters on lower lip this cycle. Just regularly creamed it. Almost dried.
- had red scars - skin peeling on sides of nose & around eyebrows. Regularly creaming heals instantly.
- no hair loss for now
So far, so good!
Hugs, Ebru0 -
Stagefree ... did I understand you to say no dairy products with Xeloda?
For anyone else, is hair loss to be expected?
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Stagefree, what I should have asked was no milk on Xeloda?
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Wow - lots of new additions to this board!
I've been on Xeloda since November 2012. I have lost track of how many cycles/rounds of it I've had. I take 1000 mg in the a.m. and p.m., 14 days on, 7 off. I have not had one issue with my hands or feet. Seriously, not one. I firmly believe that if my dose was higher, I definitely would have that SE.
Fatigue is my biggest SE, but it comes and goes, and isn't really predictable. I would say, if I really think about it, that day 5 it starts to hit me. But some days I feel great, and others, I just want to lay in bed and sleep all day. Don't fret about taking a lower dose than other people. I had my first scan in Jan. 2013, and I had no progression, and the doc said I was stable. Also, my tumor markers had gone down every 4 weeks. Last week was the exception on that, it went up by less than a whole point. But I'm trying not to freak out about that.
Also, my WBC is higher than it was before this chemo. Yes, you read that right. For the last 12 years, after having AC/Taxol, my WBC was only 4. Right now, it's at 5.6!!! Additionally, I used to bruise SO easily, and it would take months for any bruise to go away. Not so anymore. I bruse slightly more easily than a normal person, but only slightly, and the bruise disappears in a week vs. months. The onc can't explain it.
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