All about Xeloda
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I was told last month that when I recovered from having to have an IM rod in the femur and then the radiation, I would be put on Xeloda and she would hit me hard. That visit will be next Friday. I have been reading trying to get an idea of side effects. Has been interesting as they seem to change but the HF thing seems to be the most consistent.
I can't remember if it was Chickadee or Chele that was injecting lotion into the tips of her gloves. In shopping at our local TJMax store, I found the real soft plush Aloe Moisture Gloves and socks. The gloves have Aloe and Vitamin D. They also had some intensive hand and foot repair cream. Both are to heal cracks and soften the skin. Not sure how many TJMax stores might have these products, especially the infused gloves and footies but certainly not expensive, $4.99. Thought I would share in case any of you are interested. If your local store doesn't have them, send me a PM and if you would like to try these, I will be glad to see if they have more available locally and mail them to you. I bought two of each. You wash them in cold water.
I should know next week this time if I will be joining you and what my dose will be. Scared - but a new treatment brings new fears. After stopping the Abraxane, having the surgery and recovery time and radiation, she placed me on Aromasin. Having scans on Friday so praying that Aromasin has kept me stable these past 2 1/2 months.
Will ask if Xeloda has caused any of you stomach issues other than nausea?
Hope it was ok to post - just read about the lotion being put in the tips of the gloves and thought I would share what I had found. I put the foot cream on and then the socks for awile. My feet are much softer. Not sure if I am even doing the right thing to prepare.
Thanks Brenda
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Chele does the injection thing. Welcome Madame X. I hope X treats you well. There are stomach issues. Gas, indigestion, the big D. They came and went. For some reason ice cream can really upset my to stomach these days but milk is fine. First my feet got really dry then they settled down, lately they are stinging a bit. I found those gloves and socks at Kohls too.
I couldn't tolerate 14/7 schedule after the first month and my onc agreed to the 7/7. That's been tolerable.0 -
Thanks Chickadee. Seems lots depends on the dose and I have no idea what dose she is talking about when she said "hit me hard". Did you feel that the socks and gloves helped?
If I return Friday with my prescription, I'll see everyone then.
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I couldn't keep them on. The socks always worked themselves off at night and I was too busy during the day to wear the gloves very long. Sometimes if I know I'm going to sit still and watch a movie or something and not play with my ipad, I slather up my hands and wear them,but not often.
My initial,dose was 2000mg am and 2000mg PM. On a 14/7 schedule. We dropped back to 1500mg twice a day because of the HFS and indigestion. After reading about others on here I negotiated the 7/7 schedule and its worked well for me so far. Scans coming up and I hope I don't jinx myself.0 -
Hello Naniam,
I have been on Xeloda since late August with very good results and very little in the way of SE. My Dr. started me out on 1000 mg. AM and 1000 mg. PM., two weeks on and one week off. I have been on that dose the entire time. I also get Herceptin. The reason I started at the lower dose was that I became very ill while on Navalbine and was hospitalized for several days. My onc. gave me a few weeks to recover from that before he prescribed the Xeloda. I have had two CT scans since that and improvement was noted on each report, along with my tumor markers being within normal range. I use Udderly Smooth lotion on my hands and feet every night. Hope it works for you too. Wishing you all the best!
Joy
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Nanium, yup, it was me injecting lotion under my gloves. Works great for getting it to where I needed it. I'm using Aloe now! I think the Aloe is actually healing them instead of just greasing them. I'm peeling again, so who knows.
Yes to the stomach issues. It's a different world every day. Such a mixed bag if tricks. Constipation for a day or two, just the opposite for a day or two, stomach pain, gas, bloating, loss of appetite, voracious appetite. Crazy.
I'm sleeping better than I have in a long time. But I'm tireder than I've ever been.
Oh, and nose bleeds. It started with a runny nose, now I just bleed. So odd.0 -
I'm having nose problems. Second go round so this must be connected to. Not bleeding but dry like my hands and always feeling crusted but can't blow or wipe anything out. I guess it's like our hands and feet. I'm squirting saline water up there to try to keep it moist. Really annoying.
Sore spot on the back of my head giving me the Heeby Jeeby's. Bone scan Friday and CT Monday. See onc on 27 th. hoping to keep on keeping on.0 -
Your nose sounds like mine chickadee. I use a saline gel, helps soften the crusty feeling. I hope your sore spot turns out to be nothing.
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yes to the sore nose i use a nasopure netti pot i think that the winter dryness isworse from x but my side effects are doable one of my tumor markers is up but onc is going to see how this weeks looks before ordering scans haven't had one since August. ice cream does a # on my stomach too i thought it was the tykerb.
love and blessings to all of u- Chris
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Can't sleep rant. Deleted.
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Sorry you can't sleep chickadee. Oddly, I sleep great on X.
I use a netti pot too braids! Not daily, but when my nose is at it's best. I tried using a humidfyer in my room but I couldn't stand the noise nor the cool air moving around me.
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Ok ladies, I am now officially a Xeloda gal. My scans on Friday looked good - stable. She gave my my Xeloda meds and we came to Richmond, Va., to visit with our 2 young grand daughters before starting the Xeloda. We are leaving tomorrow morning and I will take my first dose tomorrow evening.
She is starting me at 4300mgs. a day - she pretty much told me nausea is a given. I am to stop the med if I have 5 diarrha like BM's in a day. I got the impression she didn't think I would get very far on this first 2 weeks.
Is ths pretty much the standard starting dose? Any advice or suggestions would be greatly welcomed.
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I started at 4000mg on a 14/7 schedule. Hands and feet got really red and dry. Yours is a bit higher than I've read. It seems the onc like to start high and back off depending on SE's.
We backed off after the first month to 3000mg on a 7/7 schedule. I've been on that since last May....so far so good.
You know I don't remember if nausea was a problem, I have to look back on this thread and refresh my fuzzy brain.0 -
Looked back. Did have a lot of indigestion, fatigue, and some big D in the first month. I was still recovering from Afinitor so the coughing was not resolved but improving.
Once we lowered and went to 7/7 things got better but SE's have come and gone. They are random, go away, come back..
Overall though its been very tolerable.
I hope it treats you gently but don't be afraid to ask for a reduction if its too much.0 -
Chickadee, she talked to me about the Aromasin/Afinitor. I didnt find the 2nd bottle of lower dose tablets until today. I had originally thought I was on 4000mgs. daily. I'm still having tummy issues but hoping they settle more in the next 12 hours.
I got radiation burns on my backside - along the panty line- just like before. Using the bag balm there. My Daughter and SIL got me small bag balm to carry in my purse and a large one to use at home.
Thanks for taking the time to answer and for the encouragement. Wish I could say I'm not dreading this but for some reason I am. Think maybe some of it is the issues I am having with my tummy; other is that I don't know this oncologist very well and not sure how she is going to respond to my side effects and lowering the dosage.
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I learned about the 7/7 here. Somewhere early in this thread there is a link to a study that 7/7 is as effective as 14/7. X builds up in your system. 2 weeks was too much toxicity for me and others. If I can find it I'll copy/paste it for you so you'll have something to refer to if you find after the break in period you would prefer this schedule. It's nice to have so many chemo free weeks but I have to tell you sometimes the week off is when the side effects rear their head. Onc said that we are detoxifying so that affects us too.
I forgot the weirdest SE, my left ankle and leg swelled. No DVT, just fluid retention is all we could figure. It's not swollen now but I have often had trouble in the summer months with swelling of ankles.
Try to get in front of the stomach issues if you can. I kept promethezine handy and I already had Aciphex. Sometimes they didn't help but it was the first month that was the most intense. I remember some days when I just needed to sleep all day. So I did.0 -
Here's an article:
http://www.medicalnewstoday.com/releases/104648.php0 -
I'm on 4500 mg a day 7/7 and I've had very little side effects. My hands get a little dry and red, but so far no peeling. I would say my only side effect has been a heartburn/acid reflux feeling. I also feel a little bloated and gassy sometimes, but previcid seems to be helping with the heartburn/reflux issue. Also sometimes I have fatigue, but most times I can push through it. All and all I feel like if it keeps working, I can handle the side effects. I've been on Xeloda since August 2012
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Hi ladies
I' a newbie to Xeloda....on day 13 today. Not many side effects at all although I do realize the first round might be easier.
I've had very minimal nausea & diarrhea & so far no hand/foot syndrome! Is it likely to start up in cycle 2? I have been a bit fatigued although not every day....
Also, how often do you all get scanned to see if it's working.....my first 2 chemo's didn't work, spread from bones to liver while on Paclitaxel/Gemzar
Very depressing....& I lost my hair for nothing.....lol
I'm getting scanned after 3 cycles to see if it's working.
Take care & thanks for listening.
Karen x0 -
Chickdee, thanks for the article. Think I said my oncologist of 7 years left and I have only seen this lady oncologist a few times. I said something about one drug she mentioned and she ask me what "rinky" website I got that information from - it didn't sit well with me as I come here and BC Mets and these are not "rinky" websites. Trying to get to know her but not comfortable with her yet so contributes to my anxiety. I am hoping she will consider the 7/7 if I ask her about it. I am on Protonix and take a probiotic also. I did read on the paper I was given that you shouldn't take antacids when you are on Xeloda. I've used those lately too.
Lil, thanks for sharing your dosage and that you are doing well on it. I truly am not normally someone that whines about starting a new chemo. I am rather frustrated with myself.
Karen, glad to have someone else that is new here and is doing well with the Xeloda. I am hoping you continue to do well and not have the bad side effects; only minimal ones.
First dose taken - hope I get a long time from Xeloda. Thanks everyone, again, I have not had a problem with any of my chemo's. Never realized how much trusting/having a good relationship wth your oncologist could make such a difference in starting a new chemo until now.
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Naniam, I think your new oncologist demonstrated an appalling disrespect for you as a patient with that statement. It betrays an dismissive attitude to me. I realize Drs get weary of being bombarded with Dr Google information that is poorly researched. I'd be interviewing someone else if I could.
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Naniam, I took Xeloda after I had my ACT and surgery. My onc prescribed it before I became Stage IV. I don't remember the dose, but I'm sure it was the suggested dose and 14/7. I did well on it. I kept my hands and feet slathered...seems like a long time ago. Anyway, my onc told me if I got diarrhea to take Imodium after each bowl movement. He said NOT to follow the directions on the package. Of course I'm not advising anyone to do that but to talk with your onc about it. I only had the problem one time. I think it was a tummy bug.
I rarely post on this forum but like to check on people I know. Hope everyone will do well on Xeloda.
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I posted a separate thread about the turn of events today. Progression. Unless my HER2 status has changed (they are checking) I will add Ixempra to X. She wants me back on the 14/7 schedule to try to knock this back. The liver progression was small so she feels Xeloda is still effective but needs an assist. The new lymph node involvement is the crappy news.
I'm sure I've read of others on this combo. Help me get a handle on what I might experience.
Losing my hair for the first time.....that will suck big time.0 -
Chickadee me too just had ct 1st one since june appt monday pretty sure i got progression my node under arm is bigger and hurts tumor markers up don't know what he'll do increase x hopefully i'm on a real low dose 2,000 a day 7\7 tykerb since sept. will see
i have tried alot of different things for hand and foot the summer was worst for me did henna paste also have what looks like chemical burns on index fingers when this flares up i use silvaden(sp)? i also use blue goo from walmart 1st ingredient is emu oil no petrolum in it also a old family fav resinol for the chapping like thing if any one wants to pm me i'll try and anwser more fully
love and blessings to all
chris
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Chick, oh darn. Sorry to read about the progression. I know that there are combinations with other drugs and the Xeloda. In reading back several pages last week, I remember that but not the names of the drugs. Glad that she has feels Xeloda is still working, just needs a boost.
Keep us posted
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Well crap chickadee. Sorry to hear you have progression. Personally I liked being bald. I wore a doo-rag, very handy to flip off during hot flashes.
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You know I've always wanted to wear hats and scarves but thought they looked stupid with my hair, I could never figure out what to do with it. But I do like my hair. It's a pretty auburn and nice and shiny and I haven't cut it in a year just for spite. All day today I found myself grabbing a bunch and twisting away. That was always my nervous habit. But today the awareness of doing it was vastly different.
This is my first go round since i was stage IV out the door and didnt do the typical surgery/chemo/rads stuff.......and somehow I think I've connected moving to something that takes my hair as a very bad sign.
I have all next week on chemo holiday so we can line up a schedule so I'm really tuned into doing normal stuff and appreciating it. Xeloda has gotten too easy.0 -
Naniam - my onc has me on reberprazole or sometimes called peirriot for the stomach upset and indigestion/bloating.
Sorry to hear about the progression Chickadee.
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It WILL be OK chickadee. Maybe shop for a wig ( if you plan on wearing one) while you still have your hair. It would make it easier to match. Or go for something wildly different. Or how 'bout a different wig for every day of the week?
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Saskie, thank you for sharing that medicine. I've not heard of that drug but will certainly ask about it.
Chickadee, I lost my hair again over a year ago and it is just now growing back. I did get tears in my eyes as I walked out of the beauty salon when I had her shave my head and the tears flowed when I got in the car. I came home, got in the shower and then used the razor to get me to bald. It also wasn't as bad as the first time I lost my hair. This time I even got to where I could let people see me bald.. I have honestly enjoyed wearing my hats and scarfs. I know it is a BIG deal when we loose our hair; just another reminder of the road we are traveling. I so hope it isn't to painful/hurtful for you.
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