All about Xeloda
Comments
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That's a lovely picture. Nan, your buzz cut looks good on you. Haven't got used to mine yet.
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Chickadee and Leftfoot - I have had a lot of luck with MagniLife foot cream. I found it in Rite Aid drug store (right under the Dr. Scholl's shoe inserts). It's meant for diabetics and is used to treat nerve pain and cracked skin. I've been using it for about a month and I have to say - my feet look much better! The soles are much pinker and the wrinkly skin on the tips of my toes is going away. The cracks on my heels are much softer. It isn't cheap - $20 for a smallish jar but it lasts for about two weeks.
I have to say I have pretty minimal SE compared to what I read on here. And the cream doesn't work on my hands. But it is amazing on my feet!!
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thank you Dormouse. I will definately try it.
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Hi all - just checking in. I've been off the boards a while because work has been beyond crazy. Some days I don't know how I can handle it all. I had an itching spell for about 2 weeks - but that has happened to me before, and in my case it was brought on by extreme stress. I've lost count of how many cycles I've had - been on X since November. I'm on 1000 mg. 2ce a day, 14 on, 7 off. So far, I haven't had any HFS. I do sometimes feel just overwhelming fatigue, and also get bloated from it - but I honestly cannot complain.
Had first CT since original CT and PET in Oct. - and no progression. Doc is calling me stable. I also take Tamoxifen. I feel pretty normal, all things considered. Do have pain in my lower spine, but I just deal with it. Also started on Xgeva about 4 months ago, and having major jaw pain - and I figure it's from that. Gonna talk to onc next time about stopping that - it's freaking me out with the possibility of ONJ as a side effect.
Anyhoo - just wanted to poke my head in and say hi.
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1've just completed reading page 15. It is hard to see the beautiful sisters who already passed away, so soon after posting such encouraging info. OMG! RIP all.. now back on reading..btw K-LO I am only now starting to imagine how much harder it must be for you & others who had time to connect more with these sweet ladies..
Ebru
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Hi Ladies,
I just wanted to check in. I've been on Xeloada since August 2012. I have cancer in auxiliary lymph nodes, small lung mets, and a single liver met. I had scans earlier this week. Everything is is either stable or reducing. I was so happy to reach the 8 month mark and have the treatment still working. Next scan planned for July. So I'm trying to just live in the moment and enjoy.
I'm on 4500 mgs a day. 7 days on/ 7 days off. I have very little HFS side effects. I'm very close to loosing my finger prints and my hand feel sensitive when I do lego's with the kids....but it's very managible. I use the udder cream and live it. I only use it daily on on weeks. Off weeks I can go every other day.
My worst side effect is feeling bloated, gassy and an acid reflux feeling randomly throughout the month on both on and off weeks....but previcid really helps. I think my problem is I don't like taking the previcid regularly. (Not because I don't like taking previcid, just because I don't like taking extra medications). My other 2 consistent side effects are fatigue that usually only hits on the on weeks when I have to get up...once I'm up, I'm fine its just getting out of bed. Then at the end if day I'm tired earlier, but if I go to sleep to early I don't sleep through the night. And the other side effect is my nose sort of gets crusty inside.
An other side effect I think I get from Xeloada is random, headaches, belly aches, headaches, bone aches, muscle aches and bone aches that even wakd me up at night...but usually I take a Tylenol or aspirin and it goes away the next day.
Love and prayers to all the X ladies!0 -
I meant to say August 2012
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Glad to hear it's still working for you! Lucky you on the HFS. It drives me nuts.
So far so good for me too. I can tolerate the HFS since the Xeloda is working.0 -
Thanks so much for the info and encouragement. Waiting for the onc to officially tell me this is the next treatment. Faslodex failed miserably. Now liver mets & progression to bone; mets to the spine have to be radiated, starting next week (first experience), ugh. So, hearing how well xeloda has worked for you with few side effects gives me hope! Something we all need!
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Lil ... one question, did you start Xeloda 7 on 7 off or did you first try the 14 on and 7 off?
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Syrmom, I started the 14/7 and was pretty miserable stomach wise and HFS. Talked onc into 7/7 early last year and it gave me a year stable. Now with Ixempra she expanded back to 14/7 to track the cycles. I'm on my second cycle of the combo, the first one I had to sto at 12 days for the stomach upset. Shall see if I can make 14 this time.
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I started 7 days on 7 days off after Tamoxifen failed and I had progression (a liver met) on the vaccine trial I was on. My Sloan doctor suggested 7 days on/7 days off from the start. I can't remember her exact words but she said that based on their research they believe the 7/7 schedule is just as effective as 14/7 with less side effects. I actually started at 4000 mgs (8 pills) and had a slight TM decrease. Since I had little side effects she upped me to 9 pills a day and the next cycle I had a larger TM drop. I thought she would up me again, but she said she was happy with my results on the 4500 mgs a day. To be honest I'm not sure if I could handle the 4500 mgs for 14 days as well as I handle it for 7 days. After the 7th day I'm real happy for the 7 day break.
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Eight days on xeloda and so far, so good. I'm really glad to know ahead of time that the SEs can come and go. I've had headaches a few times but those are easily remedied.
I just wish my achy feet and knees would start to improve. The femara was really wearing on them and I was hoping after a week I would be well on my way to getting rid of the soreness.
In 10 more days I go back and will find out if my TMs have changed from xeloda. It would be nice to have the drop.
I also asked my onc if we were still going to go for the parp inhibitor trial even if we find out that xeloda works well for me. He thinks we should still do the trial since it is a targeted treatment for me. And we can always come back to xeloda. And my goal is to kick cancer's butt as hard as I can. But for the next month or so, I'm going to ride this chemo and cross my fingers it works for me.0 -
Anacortes - I'm interested in the trial your talking about. Do you know where I could get information on it? Wondering if it would be a target for me as well. Thanks ...
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2 questions:
1) does xeloda cause chemopause? As of today I am officially off Femara&Lupron, and it's been already the first week of my second cycle?
2) I was soo hoping to start walking regularly again, now that it is warmer, but the HFS scares me off. Have just a bit tingly feeling & redness on the soles of my feet yet? I need some advice on exercise?
many thanks, Ebru
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Hi, Stagefree -
Xeloda has not caused chemopause for me. I take 1000 mg 2ce a day for 14 days on, and 1 week off. I have had no problem with HFS at all. I started taking it in November of 2012. I get fatigue from it (comes and goes), and stomach bloating, sometimes constipation, sometimes the opposite - but I cannot complain at all. I also take tamoxifen. I've never been on lupron, though.
Hope you have a peaceful day!
LL
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Thanks Liz, I'm on 3000mg/day for now, will learn soon after Lupron leaves my system soon about the chemopause, then. Same as you, the fatigue comes & goes. No major d/c yet.
Ebru
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Be gentile with your feet. No heavy pounding. I was on 4000/day when onn it and had little se's.
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Hello Ladies,
Just had a progression on carbo/gemzar, so I will soon be starting Xeloda.
So glad I found this thread. I've read back many pages, and gotten some good tips.
I see the MO tomorrow - so far I know it's 1 week on, 1 week off.
Off we go...0 -
Hi, OBXK!
I have found this to be a very mild chemo. I was so afraid of it before I started taking it, having been just newly diagnosed again last October. But for me, it's very do-able, and certainly seems to be working, as my TMs have dropped every time blood has been drawn. I am just crossing my fingers that I am able to stay on it for a long time.
LL
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Hi girls
Been on holidays & just checking in.....
Very interesting reading the different side effects! I am on day 14 of cycle 3 & have had very little side effects. Bad nausea around day 10/11 & tiredness. HFS is so minimal, there are slight red marks on my right hand & foot (nothing in the left side) but I can't feel anything, although I do wake up with pins & needles right up my right arm some nights. Also the occasional headaches & bone pain.
All in all though,, I'm finding it very tolerable. Scans next week so I will find out if it's working.....fingers crossed.
Take care all
Karen xox0 -
Hi OBXK! Lucky you to start out on 7/7. I'm liking this chemo much better now that I'm on 7/7. I've had great results with it.
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I met with my MO today. He said if I had redness or pain on H&F to stop taking it and call him.
It's being mailed to me, so o don't know the dosage, but it will be 4 pills, twice a day. He also told me to take a zofran with the pills, each time. He warned me of diarrhea in week two.
So, before I begin, I'm getting my feet in the best shape possible. I like Podiatrist Secret for my feet. It has urea. I'll work on keeping my nails oiled.
Not sure I am geared up emotionally, to take drugs twice a day if they make me feel bad. There were some days I thought I'd need to be hog tied and thrown in the trunk to make it to chemo.
Take good care... Karen0 -
I want to have things on hand to help with any SE's before I start. I have Miralax, stool softeners, gasX and Imodium. I have never had issues with heart burn - what should I have on hand for that? Is there a Rx that is better than a OTC? I use Maalox for mouth sores.
All advice appreciated. I start on Wed. I think the dosage is 2000 twice a day. 7/7 schedule.
Thanks...
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Hello, I started Xeloda in October 2012 14 days on 7 off. My first cycle was 2000mg morning and 2000mg night. The second week I had almost every side effect that has been mentioned on this thread. I waited till the end of my 14 days to contact my oncologist (big mistake) ended up dehydrated. We lowered the dose to 1000mg morning and 1500 mg night still 14/7 cycle. This has been much better for me. I had lots of stomach issues for awhile and took a prilosec in the morning and one in the evening - this helped. HFS is a problem but if you take care of your feet and hands it is tolerable. I wear gloves and socks at night and use either bag balm or aquaphor. If my hands and feet get bad I will wear the gloves during the day also. I still try to walk at least a few times a week. I know when I walk then I have to spend the rest of the day off my feet because they get very tender but it is worth it for me to get the little bit of exercise.
The side effects do come and go so you have to be prepared for any of them.
My TM started dropping the first cycle and have continued to drop every month. For this reason I will continue with the Xeloda until it stops working.
Good luck to all of you.
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OBXK, not heard of maalox for mouth sores - do you swish with it?
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Thanks Frapp. I've ordered a new new pair of Sketchers shape-ups which my DH has been so found of (has arthirithis) & try walking short distances, no heavy pounding as you suggested. The second cycle has been gentler so far, keeping my stomach full this time!
OBXK, good luck with X.
Karen, good luck with the scans, waiting for your good results.
LL, chele & getonwithlife, hope us the X newbies are as lucky as you are with the results, fingers crossed.
hugs, Ebru
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Thanks ladies! Yep, I swish with maalox.
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OBxk, thank you, it amazes me the wealth of information on these boards ... just wonderful. Not to mention the endless support! Anyway, if the over the counter items don't work for acid indigestion or GERD, your doc could prescribe what's called a proton pump inhibitor, same as over the counter but stronger. I've taken a variety of them for years due to GERD and a hiatal hernia, they all work well. I'm presently on what's called Protonix which now has a generic, Pantoprazole, which is much cheaper. Good luck, I'll be watching as I believe Xeloda is the next step for me once I finish radiation to my spinal mets.
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Okay, anyone else dealing with this?
I've been on Xeloda for a year now. Had no side effects until I spent extended time in a rehab hospital with my mother, who'd had a stroke. Used antibacterial foam constantly, and now my hands are peeling, red, and swollen. But here's the weird part- the skin on my my left thigh is also feeling the same sensations- sensitive, tingly, etc. as my hands without the peeling. WTH is up with that?
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