All about Xeloda
Comments
-
I'm supposed to start Xeloda tomorrow and I am scared!!! How long before the side effects start??? Supposed to go camping this weekend and actually want to have fun been on Afinitor and Aromasin until three weeks ago latest scan showed progression in liver bones still stable??? Do you lose your hair on this as I did when I was on Adriamycin and Cytoxen?? Just getting me down sorry for all the questions.Deb
0 -
Deb--I've only been on Xeloda for 8 days but so far no bad side effects (mostly I'm just more tired). I just came back from a visit to my oncologist and she said most people do well on Xeloda the first week and that's it's more like days 10 or 11 that side effects can get worrisome. So you'll probably be fine for a camping trip this weekend.
Also, my understanding is that your hair may thin a bit on Xeloda but generally you won't lose (much of) it. I did Adriamycin and Cytoxan when I was first diagnosed and lost all my hair but my understanding is that Xeloda is a much much milder chemo.
I'm a little nervous about this coming weekend because we're having a big party and company and that will be the end of my second week with Xeloda when the side effects can get bad. My oncologist is most worried about me getting hand/foot syndrome where your hands and feet can burn, be sensitive, and start to peel. She told me if that started to happen to stop the Xeloda completely because taking another dose once you have the symptoms will just make it worse. She said the important thing was not to have to postpone starting the next cycle because you had to wait for your hands or feet to heal.
Good luck with it. It's been better than I thought so far!
0 -
Deb5013, welcome to the world of Xeloda. I've been taking it for 10 months. It's scary starting a new treatment. I did my best to avoid chemo (used multiple hormonals and Afinitor/Aromasin for as long as I could). It turns out it's not as scary as I had imagined.
No, you don't lose your hair on Xeloda.
The only side effect that's bothersome to me is hand/foot syndrome. My initial dose was way too high for me so I had hand/foot problems only ten days after starting Xeloda. It felt like I was walking on hot coals mixed with broken glass. Doctor had me temporarily stop the drug but it was a full seven days before the foot pain went away so I could walk normally.
My dose has since been changed so now I'm taking half of my initial dose. I still have hand/foot problems (never as bad as that first cycle) but since Xeloda has killed my liver tumors I'll put up with cruddy skin on hands and feet.
Do keep lotions on hands and feet in an effort to ease the peeling and cracking skin. The skin issues are caused by Xeloda leaking out of tiny capillaries and burning surrounding tissue. This causes a chemical burn from within. It's not caused by a lack of using hand lotions on your skin surface.
A great thing about Xeloda is how the dose can be changed without altering its effectiveness. Be sure to tell your doctor about every side effect so they can keep your quality of life good while taking this chemo.
Kessala
0 -
Deb5013, welcome to the world of Xeloda. I've been taking it for 10 months. It's scary starting a new treatment. I did my best to avoid chemo (used multiple hormonals and Afinitor/Aromasin for as long as I could). It turns out it's not as scary as I had imagined.
No, you don't lose your hair on Xeloda.
The only side effect that's bothersome to me is hand/foot syndrome. My initial dose was way too high for me so I had hand/foot problems only ten days after starting Xeloda. It felt like I was walking on hot coals mixed with broken glass. Doctor had me temporarily stop the drug but it was a full seven days before the foot pain went away so I could walk normally.
My dose has since been changed so now I'm taking half of my initial dose. I still have hand/foot problems (never as bad as that first cycle) but since Xeloda has killed my liver tumors I'll put up with cruddy skin on hands and feet.
Do keep lotions on hands and feet in an effort to ease the peeling and cracking skin. The skin issues are caused by Xeloda leaking out of tiny capillaries and burning surrounding tissue. This causes a chemical burn from within. It's not caused by a lack of using hand lotions on your skin surface.
A great thing about Xeloda is how the dose can be changed without altering its effectiveness. Be sure to tell your doctor about every side effect so they can keep your quality of life good while taking this chemo.
Kessala
0 -
Sorry for the deletion. I accidentally posted my response to Deb5013 twice.
Kessala
0 -
Thank you for the responses it does helped and my Xeloda was just delivered about 5p.m. If you don't mind I have another question probably two haha, anyways they have said to take 3 pills in the morning and three at night, is this normal and it is 14 on 7 off?? also do you put it in anything or not I so want to avoid mouth sores thanks new it would be more than one and also thinking about starting it in the morning but would be alone is this wise???D
0 -
Hi Deb,
The amount of your dose is based on your height and weight. I'm taking 4 pills in the morning and 4 in the evening (or 4,000 mg a day) and I'm about 185 lbs and 5'6". They also tend to give you the highest dose possible in the beginning and then cut it back if you have side effects. I've seen most people taking a much lower dose than me but they've been on the medication longer (and have probably cut back at some point) and also may be smaller than I am.
I'm also doing 14 days on/7 days off to start but from what I've read one way to cut back is to go to 7 days on/7 days off. It's all pretty individual and something that you work out with your doctor over time.
I haven't been putting the pills in anything when I take them but I'm taking them about 30 minutes after I eat breakfast and dinner on a full stomach and drinking a full glass of water with them. I'm only on Day 8 but I haven't had any problems with mouth sores and that's something I've been prone to get my whole life.
I think it would be fine to take the first dose when you're alone but I'm saying that from hindsight since I didn't have any problems with it.
Hope it all goes well tomorrow. Let us know what happens!
0 -
Xeloda is taken twice each day (morning and evening). Taking Xeloda for 14 straight days and then taking NO Xeloda for 7 days is normal.Your dosage is based on your height and weight. I was initially started on 4,000 mg of Xeloda per day. I am 5'5" and 120 lbs. This was way too strong for me. I had bad hand/foot problems by day ten and had to temporarily stop Xeloda while my feet healed up. It was seven days before the foot pain went away enough so I no longer limped.
Take Xeloda with a meal or within 30 minutes of eating a meal. I take mine right after eating so I don't forget to take it. The instructions from Xeloda's manufacturer say "take within 30 minutes of a meal" This confuses people who think you have to eat, wait 30 minutes and then take Xeloda. That's not necessary. As long as you've got food in your stomach then it's okay to take your Xeloda.
I don't take Xeloda with anything other than a sip of water. After all, I'm taking it on a stomach full of food. I've never had mouth sores from Xeloda by taking it with just a sip of water.
Are you worried about taking Xeloda when you're home alone because you think you might have a bad reaction to it? I hear what you're saying but you'll be fine. As I understand it, an allergic reaction is rare. I started taking my Xeloda when I was home alone.
Kessala
0 -
I've been taking X since last November and the SEs have not been bad at all. My hands and feet are dry but not peeling or cracking. No mouth sores. My skin is definitely darker and dry. Fatigue gets me down in the afternoons and I need a nap on some days. The worst thing for me is that the white counts are low. I started with 14/7 and completed 9 cycles, 3000 mg per day. After cycle 9, my white counts were too low so I had 3 weeks of break. I just completed a cycle of 10 days on and 14 days off. I am a bit nervous of the lower dosage and longer break. I am meeting with my MO this week and will talk about it.
0 -
Thank you Kessala and Gem State girl that really does help alleviate some of my terrors lol, I am 5'3 100lbs and will take 3 morning and night so hopefully that will work and have very little side effects but lots of success, I will definitely keep you updated on my progress however have a question once again I have a bit of pain but also have a problem with most pain relievers, like vicodin, Percocet, hydrocodone, dilaudid etc, may not have spelled it correctly causing nausea and vomiting as well as fentanyl patches, I have ultracet which does little to nothing for me, is there a pain reliever out there that actually works and isn't Vicodin based ??? I take the Phenergan and have tried Zofran as well before and wait quite some time before these pain meds and it still doesn't help much, but Just so you know thanks to you girls I will be able to sleep tonight !!! You two ROCK!!!!Deb
0 -
Hansaim, Thank you as well , I guess its a trial an error type of thing but from what I've read sounds like they start you than adjust the dosage and after they see how it effects you which I think and hope is good and if you read thru the threads this treatment sounds promising and from what the two ladies have told me I don't think you have much to worry about on the cutting down of the dose or the break and I am sure they will respond to you and make you feel better about things as they have me
Hugs to you,
Deb
0 -
well it's goodbye to Xeloda for me too, sadly, it was a very do-able chemo. My scan shows progression of existing mets in lungs plus "numerous new nodules visible". Had a bone scan and organ ultrasound this morning, liver etc all clear, don't know about the bones yet.
So I'm going to start Gemzar/Cisplatin combo next. Just waiting for my insurance to give authorization and we'll start. Shoot, my hair is so nice and full and now it's all going to go again..... Nice to focus on the hair and not on the cancer growing inside!!
Crone, good luck on X, hope it kicks some cancer butt! I used creams from the beginning, slept with cream and socks on. My hfs was mostly in my hands, I found that bandaging the splits in my finger tips helped a lot. I would say just use lots of cream, it helps, but I didn't find that it prevented my hands cracking. Don't put your hands in hot water, they say too. I used Immodium for the diahorrea (I think Lomotil is the other one) and that helped.
Sherry9316. hope you got good news today!! I hope your feet start feeling less painful, maybe you can adjust the dosage or the cycles? I was vomiting until they lowered my night dose, then it was much easier. Funny how it hits some people's feet and some their hands, guess we all tolerate things differently.
Wishing you all well on Xeloda and on your journeys xxx
0 -
Carol: I am saddened by your news. I pray that your new tx regimen will do its job and kick your cancer to the curb!
Deb: I am new to Xeloda also. I started April 1 and am on a 7/7 cycle. I have experienced mild SEs on it. I already had feet issues from my initial chemo (Taxol). I mostly have experienced extreme fatigue the week I am taking it. Hopefully you will do well. As others have said, if you start having bad SEs your Onc can lower your dose. I started out taking two pills twice a day. Then went to three after a month and will start four pills (full dose) next week. I use Biotene regularly and have since my initial chemo. That's what was recommended to me to help prevent mouth sores. So far I have not experienced that SE.
Crone: the week I am taking Xeloda, I have mild nausea and stomach/intestinal upsets for a day or two. I have not had full blown diarrhea, but do get loose stools. (Sorry for TMI). I find if I take half of an Immodium at the first sign, it usually does the trick. I have had such mild SEs with Xeloda compared to the major over the top SEs I had with my initial chemo.
And now for my news. Met with Onc on Wednesday to get PET results to see how well the Xeloda was working. I was prepared for the worst. So when he said that I had a great PET result and that there was no sign of cancer in my liver now, I didn't believe him. It took him a while to convince me. I made him show me the written report, I grilled him about the results and finally I said, "You mean I am now NED?" His answer was yes. Even now typing this post I am having trouble believing. My scan also showed the areas of uptake in my thigh and lower back to be resolved. I am so humbled and grateful for people who have prayed for me and supported me these past couple of months. I am to continue taking Xeloda indefinitely for now.
0 -
YAY Sherry9326, that is such great news!!!! So so happy for you, hugs x
0 -
Carolben - good luck with the next treatment!
To everybody else on Xeloda, I have been on X for 9 months - hoping for NED but at least have remained stable thus far. Besides all the myriad of different lotions, I have found that the best HFS treatment is taking Celebrex. I am still a bit peely, but the redness and pain are gone! Anyone else out there who has tried it. It really was a game changer for me. I e en take it on my off week to keep things under control. Worst Sx for me is exhaustion. I am sleeping a lot and pushing myself to do things. I said to my Onc if if held my breath and stamped on the ground, would he fix this? He just sorta looking at me in an amused but pitiful way...oh well.
0 -
Ok Gals started the X and will tell thin an hour I was vomiting is this normal??? however will tell you that I tend to have a very touchy stomach to begin with, even pain mains do this with me taking Phenergan or Zofran seems I have a problem with most pain meds any suggestions??? I have ten Percocet, oxycodone, hydrocodone, fentynal patches and Dilauded not sure on the spelling about anything that contains Vicodin. I also need to gain weight so Any suggestions any one has would be greatly appreciated as I have so many reasons to keep fighting especially one little 4 year old named Jack Rian hes my grandson
guess Im also a bit down I wonder if its me or the meds?? Sorry to rant 0 -
Deb, I've learned to take it with the Zofran or Compazine. The constipating effect of the anti-emetics has kept me from Xeloda-induced diarrhea at least. I've got a very sensitive stomach too, and get barfy too easily.
Damn - I've finally learned how to spell diarrhea with confidence, thanks to this disease.
I've also found that this drug has affected my mood more than Taxol, Arimidex, or Faslodex. What has every one else experienced?
0 -
deb, I get really nervous and sometimes take Ativan before new meds. I am starting X Friday I may add Ativan to the mix. I am also getting gemzar chemo too.
0 -
So far so good day two down and no major side effects and can I ask what antivan is and what is is used for as I get a bit anxious before these and during them and Blainejennifer having the same issue as far as diarrhea goes which is a good thing as I don't want o need to lose anymore weight as far as moods go so far okay other than I seem to be a bit down however its really to early to tell but will let you know as trust me my kids always let me know lol and Tina Once I find out more about the Antivan should I ask my onco about it??hugs, Deb
0 -
Hi all I'm new to this thread. Started Xeloda on July 2, 3,000 mgs per day one week on one week off. I had very different days the first week - three days of fairly intense exhaustion, headaches, emotional, I don't know if I was dizzy or shaky or just way off but I didn't feel like myself at all. Then mixed in I had four fairly good days with just some tiredness. I have not had GI issues or HF issues. I was also diagnosed with brain mets at the end of June so am dealing with some significant anxiety and took attivan to help. Attivan is an anti-anxiety, it was also prescribed for me with my first chemo for nausea and in my second chemo for insomnia. It makes me very drowsy and forgetful but it helped enormously the first week.
Carol I hope your new treatment plan works well for you. Clare
0 -
Hi Clare. I am on the same dose and schedule as you. I started April 1. I have one or two days of mild stomach/intestinal upset. Mostly I experience extreme fatigue. Deb - if you continue having strong SEs you should call your Onc. They will sometimes reduce your dosage to get the SEs under control and then gradual increase the dosage. That's what I did and it really helped.
0 -
Hi all. Haven't checked in here in a while. I've been on Xeloda since November of 2012. I have never had the HFS. A couple of times in the winter, I had some VERY MINOR (almost too small to mention, really) peeling around cuticles. That could've honestly just been the cold dry weather.
Xeloda has worked really well for me - from the time I started taking it in Nov. of 2012, until this time last year, my CA 27-29 went down every single month. Then it held steady, and only the last couple of times has risen just a point or two. At last count it was 14 point something. Very low - and very much within the "normal" range. They did see a teeny, tiny bit of progression on some of my lung nodules - 3 to be exact. But I do mean tiny - a couple of millimeters each maybe. So - my onc is saying it's waaaaaaaay to early to determine whether this is the beginning of the end of Xeloda working like a champ for me, which of course, is my huge fear. (I'm also on Arimidex). He wants to wait/watch see what the tumor markers do. I get another CT scan in like 2 months (last appt. was a few weeks ago already). So, I guess we'll see then what the deal is.
Other than that - the fatigue is really, REALLY getting to me now. I hadn't had any caffeine for 2.5 yrs., but this past week, I've been drinking it double fisted, just to get a bit of a boost. Most of the time, I feel like I've been drugged - like someone slipped me a Mickey. I work full time, a stressful, demanding job and this fatigue is overwhelming. It's not "being tired". It feels like complete and utter exhaustion, it's profound - can barely stay awake, and sleeping doesn't do a whole lot to fix it. I'm exhausted constantly. The Arimidex is causing intense joint pain and muscle pain - nothing really helps it. But it is what it is, I guess.
I'm going to ask my onc for Ritalin, or Provigil or SOMETHING to help me not feel like I've been sedated. I have to work, it's not an option for me not to work (or to try to go on disability for 2/3's my salary at this point). I mentioned it once to him early on, and he chuckled and rolled his eyes. So - I suspect I'll get a similar reaction - but I'm going to make him listen to me. I've been researching the drugs they give to try to give chemo patients an energy boost so they can function. I mean - I'm Stage IV, so why not give it to me if it might help, right? I mean, what's he waiting for? I just don't see the point of suffering unnecessarily at any point during Stage IV. It's certainly not going to buy me more time, or get me brownie points in heaven.
Anyhoo - also very sorry to read that some of you are off the Xeloda train, and having to move to another treatment. No doubt scary. I wish you strength and send gentle hugs.
Love -
LL
0 -
I am in the xeloda club. I am bit nervous but will be ok got all my creams ready. My hands never felt so soft. I have question do any of u ladies continue to get manicures and pedicure? My onc mentioned something about be careful about pushing up the cuticles. Any advise???
0 -
Hi, Stella -
I get pedi's and also fake nails done all the time. But I waited in the beginning to be sure that I wasn't going to have the HFS. I've been lucky that way, thought...
Best of luck - and hope you don't get the HFS either!
LL
0 -
Thank you Lizlemon,
I love to go every two weeks and get my toes and nails done. But I will wait a bit before I do damage to myself.
0 -
Stella - I waited a good month or month and a half after starting Xeloda before getting pedicures again. I wanted to make sure the HF syndrome didn't crop up. I experienced extremely painful feet from neuropathy as a result of my initial chemo in 2010 which continues to this day. Pedicures were a special treat as they massage and rub hot stones on my painful feet. Fortunately I have not experienced any HF syndrome and have resumed my pedicures.
0 -
thank u Sherry will wait I will so miss my pedi/mani. This is the only thing that actually comes me down. That just time for myself and myself only. Oh well health comes first.
0 -
Tomorrow is my first day to take Xeloda. After two weeks of waiting for the Specialty Pharmacy, the MO office and Medicare to be on the same page at the same time, the meds arrived today. We moved last Friday and "sort of closed". ( the new owners funds hadn't been transferred) on the old house today so actuallly the timing of starting the medicine is pretty good. We can see the floor in the new home which is half the size of the former house, find our bed and even sort of make a meal so I can have the time to deal with any side effects that might arise.
Which is more important, taking the pills 12 hours apart or taking it within 30 minutes of eating. We usually have breakfast around 8 a.m. ( retirement is nice) and dinner around 6 p.m. I'm sure I could get the answer to my question if I went to " new drug" training but I have been off all treatment for a month and I'm not willing to wait until I get trained to start the med., besides it would be another $40.00 co pay.
0 -
Hi Crone--
Take the pills within 30 minutes of eating. And drink a large glass of water with them. It's very important to be sure that you take them on a full stomach to (hopefully) avoid any stomach area SE's. My MO said that it was ok to take the pills 10 hrs apart if necessary-- sometimes life gets in the way of the 12 hour schedule! Good luck with xeloda. I'm halfway through cycle 13, and have some H/F issues, but otherwise feel pretty good most of the time. And it's really helped with my liver and bone mets. I hope I can be on this for a good long time, but we all know that could change with the next scan. My MO said she had a patient who was on xeloda for 7 years-- that's the longest I've heard of on the boards here. Let us know how it goes for you. (((Hugs)))
0 -
Hi Crone,I've taken Xeloda for eleven months. I never take my two doses 12 hours apart.
I, too, am retired and sometimes don't get breakfast until 10am or later. I'm certainly not waiting until 10pm to take my second Xeloda dose for the day. I would guess my doses are typically about 8 hours apart. I think taking two doses each day is more important than worrying about having them 12 hours apart.
I take Xeloda immediately after eating simply so I don't forget to take it. I've not had any digestive issues from Xeloda. The side effects I've had are hand/foot syndrome, watery eyes and drippy nose.
Wishing you the best of luck on Xeloda. For me it's been a pretty easy ride. It has eliminated my liver mets and is keeping the remaining cancer in my bones stable.
Kessala
0
