All about Xeloda
Comments
-
Thans so much for the input, I took the first dose this morning without any problems. My stomach did feel a bit off but that probably was because we had closing on the house we sold yesterday and after signing all the papers, turning over the keys to the new owners, the closing agent went to get the checks and found out that the new owners money hadn't arrived. We all signed a paper that said it was a " dry closing" and left still owning two homes but not having the keys to one of them. Fortunately, about 5 minutes ago, we heard that the money arrived and amazingly, my stomach felt better.
Have you noticed how people seem to think that because you're taking oral chemo, " it will be so much easier". Several friends have said this to me and assume that nothing will change and I can keep doing what I have always done. Hopefully they are right. I also hope the liver mets will shrink and go away.
Retirement is good!!
0 -
Hi- I'm a newbie to stage IV & to Xeloda. I started on Tuesday- 4000mg per day (I'm around 5'7" & 120lb- so I hope its not too much for me to handle!)
I'm trying to stick to the 12 hours apart, 7:30 am & pm
So far so good- the only se has been mild nausea for a short time & feeling a little tired. I know the effects are cumulative tho, so we shall see...
I have mets in my bones, lungs, mediastinal node & ?liver- so i hope X kicks bc's butt (not mine!)
And yes, Crone I have noticed what you have about oral chemo (not that I've told many people), but its 'is that really chemo when its oral?'
Here's to us all having a good run with xeloda
kt
0 -
ok so I have been on xeloda for 4 days I feel so tired all the time but at night I am wired can't sleep lots of achs and pains. I feel my heart racing at times and my got lots of headache which I did not have. Is it something I need to get used too or it will get better with time. My hands/feet are ok stil thank god. But I cream myself up with udderly smooth body cream they say it's good. Will I ever feel normal with this med???
0 -
stellaratovsky--I'm on the 4th day of my second cycle with Xeloda and so far it seems a little easier than the first cycle. My headaches aren't as bad and I don't seem to be quite as tired.
I can relate to what you said about being tired during the day but wired at night. Last night I took a Xanax and slept really well--it stopped my mind from racing. Hopefully, I won't need to do that every night.
I felt much more like myself on my week off. Since so far, this cycle seems easier, I'm hoping that my body adjusts to the medication as time goes on. Hope that proves true for both of us!
0 -
Day three on Xeloda and it hasn't been too bad. I am very "burpy" - I could hold my own in a burp contest with my five grandsons and oh yes, that one granddaughter. The other issue is fatigue and sleepiness. The last two afternoons I was so tired and there was no way I could stay awake. I am not a napper so this is new. Thank Goodness we finished moving before this. Does this go away on the week off? Trying to plan trips to see family but I would rather not look like Rip Van Nana.
0 -
Crone--I also had the burpiness on my first cycle but so far (Day 5) I haven't had it this second cycle.
Before I started Xeloda, we moved (about a month before) and I took a trip to Europe (I started the medication the day after I got back) so it was very hard for me to tell how much my tiredness was because of what I was doing or the drug or both. We're still unpacking after our move but we've found all the things we need on a daily basis so it's more leisurely than before and not as tiring.
This second cycle has been easier so far but I was tired on my week off after the first cycle but am not sure exactly why. Sorry I can't be more helpful but most people do talk about being more tired on this drug. Will you be able to take a nap every day on your trip? I find I feel much better if I can do that.
I did notice that the foot sensitivity I had starting on Day 10 of my first cycle went away very quickly on my week off. Also, we went to a big family reunion on my week off and I almost didn't go because I was tired but I perked up once we got there and was so glad I went.
I now keep a bottle of Visine nearby which helps me feel and look more awake. It sounds like you're doing well so far. Hope you continue to do so and that you can go on your trip.
0 -
I am on day 5 first cycle and it is really kicking my ass I usually tolerate all type of meds really well. This one I have to say is killing me between constantly being tired but unable to sleep to all the achs and pains in my left leg and major headaches. I cry myself to sleep I think I need to call my onc. I am not sure if this is normal. Nights are the worst my whole body is killing me I can't sleep I don't remember the last time I had a good nap. Oh what I would not do for sleep. Also at times my heart raises a lot I think I am having a heart attack. Any advise please does it get better.
0 -
Stella, I am on day 6 of my first cycle of xeloda. The only se's I have had have been a little bit of nausea & tiredness (& a couple of short sharp pains in my heart- went away in a second) and a slight pain in my lower abdomen (?ovary).
I would call your onc about your heart racing- it might just be anxiety but just to be sure... (I rang my on call number re the heart pains just to put my mind at ease & it helped).
I hope you get some sleep soon-it is so hard to function if you're not sleeping
Are you taking pain relief for your head? Sounds as if you should.
Hope you feel better sonn
kt
0 -
Just had scans annnnd...I am NED! First time in four years. My mets were profuse in practically every bone of my body; I can hardly believe they are all gone right now.
I've been taking Madame X for nine months. I have had a few side effects here and there -- gut pain, chronic constipation, fatigue, weight gain, drippy eyes -- but it's manageable. Hands and feet get slathered with creams regularly and are fine unless I try to wear a heel of any height. Flats rule! My chief complaint is sleep management. I am not sleepy until past midnight, and then I need 10-12 hours of sleep.
Best blessing to all--
lulubee
0 -
lulubee, that is great news to meet NED every girls dreams. May you have many, many years with him....
0 -
lulubee, how wonderful that you are keeping company with NED. Hoping he is around for a long time! And wishing that everyone on Xeloda has the same results.
0 -
Stella I'm in day 5 of my second round of Xeloda - I felt a lot of what you are describing the first round. My head hurt, my whole body hurt, I felt dizzy, exhausted, even my wrists felt strangely weak. This round is so much better!!!! The H&F thing started yesterday but is manageable so far and I only had the headache for about ten seconds one day. I find I'm very sensitive to the sun - I have a rash on my chest and back right now and the sun seems to bring the headaches on. I am also really gassy some days. I hope it gets better for you too, be easy on yourself.
Crone I had much less fatigue on my week off and less on my second round too.
Bless you all and may xeloda kick ass!
0 -
crone exactly what I am thinking am so happy for lulubee to go through so much and finally meet NED. Amazing news I wish that for every sister. I love when things go finally well. It just gives so much hope.
0 -
its been along time since I started Xeloda ( 18 months) but I remember my oncologiest saying the first 2 cycles were the hardest while your body adjusts. I will say that after that I did start to feel better. I had to lower my dose once but have been ok. I have chronic toes problems and a red face and the fatigue is amazing. But the stomach issues seem to have gone away. Hang in there. You body should adjust and if it doesn't talk to your MO about different dosage possibilities or cycles.
0 -
Yay. Very encouraging Lulubee! And leftfootforward.
My se's are very mild now- very low grade nausea at times and tiredness, I hope the xeloda is working for me as well as its working for you... I did want the X to kick bc's butt not mine, so hopefully that is the case
kt
0 -
Thank you for your kind words, sweet ladies!
And I want to encourage all you recent joiners to the Madame X club-- leftfootforward's experience echoes mine. IT GETS BETTER.
My first cycle was a BEAR. Constant gut pain that took my breath away at times and doubled me over. Then the next couple of cycles, my bones ached something fierce… because X was kicking bootaytay all over my skeleton. Honestly, I didn't know if I could stay on X after that first week, but then my tumor markers took a dip and that convinced me to keep on keeping on, no matter what. For several cycles, I felt like the side effects were proving cumulative-- seemed like with each successive cycle I was just a little more fatigued than during the previous cycle. I began to plan to pretty much stay in bed on day 8 after a cycle ended-- always my worst day-- and just nap as I needed, rub lotion into my feet and hands, drink lemon water to rehydrate and cleanse, and stay off my feet as much as possible. That helped-- after giving in to the fatigue for a whole day, I was usually back up the next day.
And then, as months went by and my tumor markers fell down into normal range, everything got better. I began to ease off my pain meds, after four years of taking them every four hours every single day without fail. My last couple of cycles, the bone aches I have lived with for so long have been so mild that I have only taken Vicoprofen a couple of times to get through. I can't even believe I just typed that. Seven months ago my liver was failing chronically and I was literally at death's door, and now I'm NED. Blows my mind.
I had remarkable fatigue during the first months, but now, after nine months, the fatigue is easing. Some cycles are more tiring than others. I try to listen to my body closely. But recently I have even taken a couple of trips during my on weeks, and done just fine. :-)
Summary: HANG IN THERE!
One thing that really seems to help me: Epsom salt baths during my week off. I buy the big bags at Costco and dump in half a bag per bath. (That may sound like a lot, but my cousin was instructed by her neurotherapist to stir 5 cartons in her tub and soak for half an hour after every massage! Yep, that's right, FIVE cartons. And she says she feels wretched if she neglects to this, because the toxins released by massage need to be drawn out. Epsom salt does that.) I do not use the salt *during* a chemo week, only toward the middle/end of my off week, to clear the decks before the next cycle.
A couple of other tips: I never ever ever go barefoot anymore. Used to all the time. Got myself some Minnetonka shearling-lined moccasins with a non-slip sole, to slip my feet in as soon as I get out of bed, even just to go to the bathroom in the night. The Epsom salt baths help keep my feet gently exfoliated of dead skin, so the lotions actually absorb. (At the end of the bath, when my skin is softened, I gently rub away the dead skin off my feet, using my fingertips first followed by a soft washcloth. Amazing how much dead skin rolls off -- and kinda gross! Sorry.) So I just always keep my feet clean, balmed up, and protected from all the bacteria, germs, and dirt on the floor and the ground. At night I slather on a thin layer of coconut oil (the BEST) followed by a thick seal of a heavy balm or cream, and then thin cotton socks to get in bed. I especially like Burt's Bees foot creams.
Oh, and I practically live in Skechers GoWalk shoes during my on weeks. Super lightweight, cushiony and soft. Memory foam insoles… ahhh. Even kinda cute. A cancer patient's friend, for sure. So far, I have not had any HFS.
Hope this helps someone! Blessings to all!
0 -
Lulubee,
Thank you for your very encouraging post. It was full of helpful information that should benefit all of us on this post.
It was especially helpful today, the last day of my first cycle, when I woke up feeling as if I had been tightly wrapped in rubber bands that could snap at any moment. My emotions were on edge and then I received a text that a dear friend died of lung cancer last night. I let the tears flow which I think helped release some of the stress I was holding in my body. The thought that after several cycles, my tumors markers might go down and the liver and bone mets might improve gave me hope that I might not feel like this forever ( however long that is).
I have not been regular at posting but I have found that I can find support here when it isn't present any where else. Family and friends try but they often don't get it.
So blessings on each of you as you face this awful disease. May you always feel surrounded by the love of those who face it with you.
0 -
For those of you who have been on Xeloda for some time-
How long did it take for you to see that it was working?
Did you have 'tumour flare' to begin with, did it get worse before it got better?
I'm on day 11 of my first 14/7 cycle and my se's have been minimal- but my butt pain (from my ischium mets) has increased, and my axillary lymph node has more than doubled in size since starting!
To say I'm a bit worried is an understatement. I'm hoping things will turn around soon. How long do onc's give a chemo to see if it will work?
I may ring the ph number they supplied to ask as well- but thought you ladies here have a lot of knowledge too & may be able to help.
Thanks,
kt
0 -
Bumping this! But I am calmer now- just curious to see if anyone has experience of this...
Day 12 now- only 2 more days to go then a break, phew. I need it cos I'm tired and find myself getting grumpy
kt
Oh, just reread lulubee's post- I see you had increased pain from X kicking butt! I guess the growth of the node is concerning tho- do tumours increase in size as they're being beaten up??!
& I'm sorry for the loss of your friend Crone
0 -
hi all,
Today is day 14 of first cycle and last day one week off YAY. Hope I feel better with week off. So so tired all the time and I feel like I have a flu most days everything achs. Well I hope it gets easier with each cycle. The most important I hope it's doing it's job. I know everyone is different but how long did you guys take Xeloda before u seen it worked??? What can I do for sleep. Feel very tired all the time but can't sleep.
0 -
Hi Stella- hooray for a week off!
My day 14 was yesterday so today is my first day off.
I worked today (reasonably physical job, rural postie) and I'm knackered & have a headache, so I'm planning a quiet afternoon.
I haven't had trouble sleeping- I hope you can soon.
kt
0 -
Back to Xeloda tomorrow - I can say that the week off treatment went much faster than the week on. The fatigue did not go away but the nausea did. I hope that none of the hand and foot or g I problems show up on the second round. This is so much better than the Afinitor mouth craters that I will deal with whatever comes along - I can say that now.
I just have to shake my head at my DH and DD, they are always telling me not to lift this, not to do that. Yet today they proposed that later this week, we take our grandson to the zoo (about 60 miles from where we live) spend the night and then do the Children's Museum the next day, all during my week of treatment. I love them dearly and appreciate their care but oh they just don't get what might be too much. Maybe I am coddling myself but we just finished moving and I did the majority of packing and unpacking and I am not recuperated from that yet.
Just needed to vent!!
0 -
Hi All
On Monday I am going into the hospital to discuss starting Zeloda, but not too sure about it after reading about side effects. I have mets in my lung, liver and eye, and I see that zeloda seems to treat bone mets.
What do you all think?
0 -
Hi sammiryan--
Xeloda has been very effective on my liver, bone and lung mets. I started it back in November, and have completed 13 rounds. All of my blood work has been in the normal range, and my CA27-29 dropped from 106 to 54, where it stayed for several months. My most recent CT did show a new lung area tumor (2 cm), but it's in an easily accessible location, so I start radiation tomorrow (14 treatments). SE's for me have been minimal-- some H/F, but assorted lotions have helped. No digestive problems or mouth sores, and very occasional fatigue. MY MO like Xeloda because it provides a steady dose of chemo, which is particularly good for ILC. I hope I can stay on it for a good long time, since it's been pretty easy so far.
Good luck with your decision! (((Hugs)))
0 -
Hi Sammiryan & Hollander. Hollander its very encouraging that xeloda has been so effective. I have lung mets too & ? lung mets. Oops edited to ?liver mets (not ?lung mets!)
I saw my radiation oncologist last week & he said he doesn't do radiation for lung mets- I have a feeling that's becos we don't have cyberknife here (NZ) is that what you're having?
So I sure hope the xeloda does the job!
kt
0 -
I hope that Xeloda kicks my cancers butt however I have the insomnia issue as well as the aches and racing heart/ anxiety not sure which not to mention I have lost about 40 pounds that I couldn't afford to lose and the stomach issues bite, so I am hoping that means its working and I agree that people tend to think since its a pill its not that bad!!! Chemo is Chemo PEOPLE!!!!hugs
0 -
Sure is Deb!
I've just woken up from a nana nap. Much needed after to work today. I found today I couldn't carry heavy (10kg +) parcels becos my ischium hurt too much
I too hope that all the se's mean x is kicking butt! I hope your stomach/sleep issues settle down soon, you need all the rest & energy you can get
Hugs to you too
kt
0 -
Hi,
Well this is my week off I just finished my first cycle. I feel so worn out. I am tired all the time and I feel at times like I have the flu everything hurts from my head to my toes. My hands tingle at times, my head hurts and my body achs and my jaw gets numb after eating at times. Is this normal and does it get better or is this in my head. One min I am ok next I am aching? Help with advise?
0 -
Stella,
The first cycle was the worst! But - good news - the second cycle was tons easier. I just finished it, and the nausea and pain were much less.
I only have one concern, and that is a weird sort of muscular joint pain. I could have over-used my arm gardening and redoing the grout on the kitchen floor, but I have had to put my arm in a sling to keep from stressing the shoulder joint. I'm hoping it resolves in my week off.
Has anyone out there had a joint reaction like this on X?
Take care,
Jennifer
0 -
Thank you Jennifer, I am all over the place. Xeloda is really kicking my butt. I am usually really good with meds but this one is a bit to strong for me. All the crazy side effects from numbness to headachs, flu like symptoms. Too much to handle my hands feel tingle in them but so fare it's fine as far as cracking. I put so much cream on it's not even funny. I hope it's doing it's job that all I hope for. To go through all of this. Oh by the way I have lots of joint pain too in my left shoulder it feels like a truck hit me. But who is complaining.
0
