All about Xeloda
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On Xeloda for 8 month, 1500 twice daily, 7/7, still working, no much side effect. Hope it keeps working......
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Wow, 8 months is great!!!!! I'm 2000 2 x's a day 14/7. We are not too bad. Better than hormonals I was on.
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Wow, 8 months is great!!!!! I'm 2000 2 x's a day 14/7. We are not too bad. Better than hormonals I was on.
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Lynn - my chemo unit asked me to stop taking the tablets and phone them if my hands and feet get as bad as you sound. You might need a reduced dose. I'm assuming you are moisturising them, but as live in UK not sure what is available for you. Anything with urea seems to be recommended.
Plumblossom - you're the first person in the UK i've heard of being on 7/7. I'd like to try it but oncs in UK seem a bit stuck in the dark ages on that one.
Frapp - I'm on the same dose as you but only at end of cycle 4.
Just went to my unit today for next cycle and they think my hands are getting a bit borderline for peeling soon and might have to take a break or reduce dose in case I get an infection in them. I have scans next week and see onc next Friday so will see what she thinks then.
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Take immodium everywhere you go. If afraid of constipation, take half can always take more later. Its been 6 months since i was on it and that's the worst SE i can think of!
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I had 14/7 for 6 cycles, very painful feet. My doctor has an open mind, he changed 7/7 for me. On the first 7/7, my feet was still very pain, then I had 5 days extra break. After that, my life changed. Now, no much side effect. The PET scan in the mid August is good, and the tumor marker is keep dropping. CA153 is 8 at last week blood test.
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I was on 1500 2x daily 7/7 but my feet and hands were getting too bad, so he gave me an extra week off and lowered my dose to 1000 2x daily. My hands and feet peeled like crazy on my break, but then it improved once I started X again. Weird. I just finished my first week on the lower dose and my hands/feet aren't as bad as they would have been on the old dose so I'll see how it goes. I did start feeling a bit achy in the interim so I think my mets were having a party, but it feels like the X is doing it's job now.
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I was on 1500 2x daily 7/7 but my feet and hands were getting too bad, so he gave me an extra week off and lowered my dose to 1000 2x daily. My hands and feet peeled like crazy on my break, but then it improved once I started X again. Weird. I just finished my first week on the lower dose and my hands/feet aren't as bad as they would have been on the old dose so I'll see how it goes. I did start feeling a bit achy in the interim so I think my mets were having a party, but it feels like the X is doing it's job now.
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Howdy X-Divas!
Checking in...been a bit. Continue to be on 4000mg/day 7 on and 7 off for a year now. H/F symdrom was really annoying and periphriel neuropathy was bad - at the 10 month mark, neuropathy started to subside and I no longer felt like I was walking on pillows and the 'wrapping' of the skin around the sides of my nails has all been gone away. Still a little peeling on the feet but managed with regular moisturizing - hands, well, no redness and quite soft as long as I keep hand cream on. Nails got destroyed - gardening took a toll so I opted to get nails on - big boo-boo. After wearing them in hopes of allowing the tips of my fingers to recover, had them removed after a month and my nails are crap. Working now to restore the nails. Fingers are only slightly numb at the very tips. No nausea and bowels ok. Recently, I believe I have experienced another fracture in the spine - minor one but the acities is back after being taken off X to allow the antibiotics for UTI work (had to do extra rounds to get rid of it and I totally forgot to take the probiotics...duh) so tummy is bloated again but not nearly like last years adventure...whew! I think after Tuesday Avastin, this will really start to go away - I don't expect great scans on Oct 9th but I don't expect any significant progression so onc and I are content with sticking with the regimen even if there is an increase in the acities - with Abraxane failing last year and the Xeloda/Avastin combo resolved it, it makes sense to allow it to work again and I am confident that it will. Fatigue is again an issue but I know this will resolve once the abdominal issues subside. It is just annoying!
I am so glad to see so many of you getting excellent results! Woo-hoo for you! And for those moving on to another treatment, I wish you the best - do check back and let us know how you are doing. I am really interested to see how the trial works for RVLiving!
Hugs to All...X-Diva LowRider
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Hi, lowrider! Im an ex but happy to see you!
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Hi, lowrider! Im an ex but happy to see you!
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Plumblossom - sounds like you have a good onc and having excellent results on your scans.
Cynthia - I don't really understand either why SEs are often worse on the week off.
Lowrider - can you get your acites drained? Hope you get better results on your scans than you expect.
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Gail...I have treatment on Tuesday and I am going to bring that up - it is slow to be absorbed and it is but a one shot draining would sure feel good and instant no more bloating! Good thought...thanks!
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Great to hear from you Low. I miss seeing you on the boards. What are you up to lately?
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Hi, guys! Just want to share some good news. My mom had her quarterly scans this week, and X/Tykerb is still working for her after 8 months! The report mentioned a small increse and change in the look of one liver lesion, but they said they didn't know if it was worsening disease or changes due to treatment, so her onc said there's no way she would make a change based on that info. YAY!
A question for you all: Mom's been experiencing some muscle cramps during the last several days of her 14 days of X. No other real side effects besides that which are bothersome, but her onc said she could switch to 7 on7 off if she wants and that if there is progression next time, it would definitely NOT be because of this change. The side effects are not anything debilitating, just annoying, so she's having a hard time deciding what to do. I told her I would ask you ladies about it for her. The onc did mention side effects being cumulative, so Mom is thinking maybe switching to 7/7 would keep them at bay and allow her to be on this treatment longer if it continues to be effective. Of course, we worry that this is less meds overall and that it could lead to progression, even though the onc says not to worry about that. Any thoughts?
Good to hear from you, Low!
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KarmaKittie-I was told by my oncologist when I started this that they actually have better luck and have found using the 7 on and 7 off is better because most times a person can keep taking it without a break due to a side effect. When they had them doing the 14 on and 7 off they would have to stop maybe a week or more longer to let the side effects subside and if it was hand and foot syndrome it may take a little while so he always prescribes the 7 on and 7 off. He said by doing this they can adjust the dosage as needed without having to stop it altogether to recover. I started on that with 2,000 in the morning and 2,000 in the evening, my hand and foot syndrome was getting bad and the nausea so he cut it to 1,500 in the evening, in a couple of months he cut the morning dose to 1,500. The hand and foot still did not clear up as much as he would like so he cut it to 1,500 morning and 1,000 in the evening. I have taken this for a year so this was over a period of several months. I had good luck with it for that time. I am still taking that dosage now but he has added taxotere to it now. I did fine for a year but markers started climbing after a year and a scan showed progression to the omentum but the other places I have it have been stable. I think I have finally found a dose that I can take and not feel nauseated or lots of side effects. I hope your mom does well with it, keep us posted.
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I just started on xeloda and Tykerb. Thanks
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I just started on xeloda and Tykerb. Thanks
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I just started on xeloda and Tykerb. Thanks
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I just started on xeloda and Tykerb. Thanks
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I just started on xeloda and Tykerb. Thanks
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Thanks for the advice Jeanieb. It's nice to know that some oncs even start out with the 7/7.
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Hi ladies. I've been busy away from the boards since Sept. 1. I have been doing my FEMA job in Louisiana and will be going home on Oct. 1. 30 days was enough. For the most part X has been good to me. I'm 7/7 at 1500mg twice a day. My back gave me great problems at first because of the basic chairs we were sitting in all day. I found a better one last week and now my back doesn't hate me so much. On day's 5, 6 and 7 my feet getting the tingly burning sensation and I walk funny but it drops off quickly on the off week.
So all in all I tested my ability to work and have survived but I'm ready to go home. Tired a lot. Some queer sensations now and then that made me fearful something bad is at work but I'm pushing those thoughts away. I told Onc. no scans until after cruise week October 21. I see her in two weeks and she mentioned taking a two week break before the cruise to help my white blood count improve since something like a cruise can be a risk if someone starts spreading a virus around. I figure my workplace tested that pretty good as well so I think I'm feeling bulletproof for now......sort of.
Another week of 12 hour days and I'm headed home. DH says it can't come too quick, he said when he has to do everything at home he appreciates me more. LOL.
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my onc also started me on 7/7 i'm taking 2000a day. i was told se are worse off wk because body is detoxing x is woking for me i am so greatful
blessings to all chris
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Chickadee - I took a 6 week break from X, we went on an Alaskan bus tour and cruise. My hands and feet were very sore before so my onco wanted me to go off so I could keep up with everyone else. If I had not taken the break my feet would have been to sore and I could not have done any walking. If I had not had sore feet I would have stayed on it longer but he said I needed about 3 or 4 weeks to get them ready to travel or he was not going to let me go. They did heal great and I had no problem. I asked about starting the X the second week of the trip which was the cruise and he told me no, go and enjoy your break and vacation, so I did and started it the day we got home. I am glad I did, I had the energy, felt great and enjoyed every minute of the trip. I know we all have to decide what to do for ourselves, just letting you know what I did and how great I did feel. I had been on it a year so guess I wanted the break also. I certainly admire what you have been doing and how tired you must be. Being away from home like that wears on you anyway and then when you are taking X also. I am sure October 1 can not get here soon enough for you. Have fun on your trip and best of luck with your scans.
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Low - hope they agree to drain your acites
KarmaKittie - I'm still on 14/7 schedule as oncs here don't seem to go for 7/7 but I've heard it works really well and minimises SEs.
Jeanieb - Good to hear you managed a 6 week break. That sounds great but I'd be a bit worried about being wihtout treatment so long.
Chickadee - sounds like a good idea to take a wee break to boost your WBC. Enjoy your cruise.
Braids3 - thanks for the explanation re the week off, I've been wondering why I always seem to feel worse then.
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Thanks for explaining why week off is worse. I just couldn't understand why I am so tired the week that I don't have to take xeloda as compared to my weeks on. My feet and hands burn more during that week also. I'm not a big drinker so I guess I'm going to have to push myself to gulp down that water.
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I'm on my 4th cycle & take 2,300mgs twice a day. Still OK with only slight HFS to my right hand & D from time to time that's quickly treated by Imodium.
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Had ct scans today. Got lucky as they found a good vein first time. Usually have to play 'hunt the vein' after 4 cycles of FEC last year. See onc for results on Friday.
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Good luck Gail. Hope the X is doing its stuff for you.
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