All about Xeloda
Comments
-
I haven't been too religious about the 12 hours either. They did tell me that initially, but thanks to chemo brain, I really sort of forgot about it!! I take mine usually about 9:00 am and then usually about 8 to 10 at night. So its pretty close to 12 hours but has not been exact. But it is working okay as scan a few weeks ago showed NO progression! Good old Xeloda!
Judie
0 -
Mustang, The onco at MDA told me if I started having problems with the hand foot deal, to stop taking it for a few days....so if he said that I don't see how it would hurt if you missed a dose. I actually missed a dose the lst 14 day cycle....ended up with two extra pills when I was supposed to be finished so know I just forgot one...when I do not know. This is the downside to me taking pills....yes, I have one of those little pill boxes with the day on it, but I still forget. Or I will take the meds and forget I took them and then I have to end up counting pills. I cannot imagine a worse job than being a pill counter.
Tired...oh yeh, I am tired now and a nap is sounding very good. In a way this is good for me because I know I used to not get enough sleep. Since it says on the Xeloda bottle to be taken with food, I take it in the morning when I eat breakfast and at night with dinner....close to 12 hrs apart since I get up early and usually eat late, but it isnt always that long inbetween doses. .
I met some local ladies for lunch today and it was very interesting hearing about all our different treatments and how ones I thought were terrible they did Ok with and visa versa. One woman had done every chemo I have plus more (xeloda was on her list) and another is doing herceptin and one is probably going to do Ixempra which was what my onco wanted to do, but instead we are trying Xeloda lst. So it was both fun and informative.
0 -
Sounds like you had a lovely time, Marybe. Glad you had fun! It always fascinates me that our docs all start with different things. I was given the choice of Xeloda or Navelbiene and I chose Xeloda because it was oral -- I was NOT ready to have my port put back in. I'm sure I will have to someday...hope not...but just not yet! My veins are shot so the only options would have been the port.
I am working from home today and I am counting the minutes until 4:30 when I can jump in bed for a quick 2 hour nap before I go out tonight. Sooo sleepy.
0 -
I shoot for 9 am and
9 pm. I can assure you that nurses in the hospital or clinic cannot be more precise than one hour before and one hour after the scheduled dose.0 -
I shoot for 9 am and
9 pm. I can assure you that nurses in the hospital or clinic cannot be more precise than one hour before and one hour after the scheduled dose.0 -
Hi everybody, I am going to start Xeloda on September 12 and am just wondering what side effects I can expect or the ones that most people get. I have read all of the info on it but it is not the same as real people telling you what to expect. I have read some of the posts here but wonder what I should stock up on, imodium, hand lotions, gloves, etc. and the best ones or what seems to work the best. I am also on coumadin so will talk to my PC doctor as she is the one that takes care of that. I have metastatic breast cancer, I had a bilateral mastectomy in 1992, six months of chemo, 5 years of tamoxifen then two years ago it came back in my gallbladder, bones, ovary, skull, etc and took 2 years of Femara. A new spot was found on my left hip in June of this year and my markers had started creeping up again. I started Aromasin and for 3 months the markers continued to climb so am going to start on Xeloda. I hope you all can give me some pointers and I am sure I will be back when I start, to post any side effects if I have them. I am hoping I get along just fine. Has anyone lost their hair or does it affect that? Of course in 1992 the treatment was a lot different than it is now and the onco nurse said this treatment is much better than what I took in 1992. Thanks everyone for your posts. Jeanieb
0 -
Jeanie, I am pretty new to this myself, but I will tell you how it has affected me.....it really hasn't. They talked about diarrhea and I don't have it....oh, I am maybe going more often than I did, but after being constipated for almost two years doing other chemos, this is a welcome change. I go more than once a day some days, but it is not diarrhea. I was very worried about the hand foot syndrome which most people on Xeloda seem to get at some point....I say most, not everyone does. I started wearing cotton gloves and socks to bed and greasing up with Working Hands or Bag Balm (one of other,sometimes both for good measure) the day I started taking the pills. I have completed one cycle of two weeks on, one week off and just started my 2nd round this past Thursday. So far, so good. Sometimes I think my finger tips look a little red and appear to be a little puffed up like there is too much skin, and sometimes they tingle, sort of sting, but then they go back to normal.
I also am on a blood thinner...generic coumadin, Warfarin. I am not sure what happens with it and xeloda, but my INR has been all over the place. One week it was 1.4, then it went all the way up to 4.6, 4.9?, I forget, but I know they were alarmed and asking me questions like are you having nose bleeds, is there blood in your stool, are you bruising more easily.....No to all questions. So then they had me stop taking the warfarin for two days and I started back on a lower dosage Friday night and on Friday when they checked it was 3.4, I THINK.....I have no memory so unless it is written down can't recall much.
From what I have read if you are on it long term, like years, it can cause your hair to thin, but that is not a commonl side effect. Sometimes I get muscle spasms and cramps, but drinking tonic water takes care of that for me.
I have been extremely fortunate I think in that I am not having side effects, but we are all different in how we react and respond. I am just praying it works for me.
0 -
Marybe, Thanks for responding so quickly and giving me all of this info. I will be on the 7 day cycle of 7 days on and 7 days off for 4 to 6 months so not to long. I am hoping I will be like you and not have many side effects. I have had a blood clot in the lung so will be on thinner all of my life. I will be sure and let my PC doctor know so that they can check the INR more than once a month. I am not looking forward to this but I can only compare it to how I felt in 1992 when I took the chemo before. I am sure this will be easier than before, back then I had two young girls at home and this time, it is just my husband and I so I can rest whenever I need to and last time I had just had a major surgery, which was a factor then. Thanks for the info. I look forward to the updates from everyone. I am praying that this will be the medicine to get it back under control so I can go back on Aromasin and quit thinking about it.
0 -
Oh Jeanie, For sure it will be a lot easier than what you did in 92....what did you do then ACT? Also I have heard that the 7 day cycle is much kinder to you with the hand foot syndrome since they say in most cases it does not even start until after more than 7 days. If I do start having problems, I am going to switch to the 7 day cycle....my onco seemed to think it was not the full dosage if I do it that way, but it is and I have documentation to prove it...think it was a link K-Lo posted that I copied. Some of the other women on here have been at it for a lot longer than I have and will be able to tell you more about it.
0 -
Marybe,
My instructions for taking Xeloda were DO NOT TAKE WITH FOOD. Wait a half hour after eating. Onc said if you take with food it cuts down on its strength.
I have had, in the past, come to the end of my bottle and had two pills left. Just stood their and scratched my head. I know I did not miss a dose. Must of taken 2 instead of 3. Who knows!!!
I have been on this for 20 months and I am noticing my hair is starting to thin out. Just notice more hairs in the sink than normal. I am sure my hairdresser will point this out to me. I made up my mind before I sit in the chair I am going to tell her NO COMMENTS ABOUT MY HAIR, I AM AWARE AND THERE IS NOT A DAMMMMMM THING I CAN DO ABOUT IT SO SHUT UP.
0 -
Aww, Jeannie, sorry about your recurrences. Jeez, gallbladder is a new one to me.
Knock on wood, I am loving the xeloda! No sitting in chemo clinic for hours and hours. No accessing my port which smarts 40% of the time (my numbing techniques often work). Very few SEs so far.
Big red flag: xeloda affects coumadin functioning. My onc told me some of the drugs I shouldn't take and I told her I won't take anything without talking to her first. She checks my INR and adjusts the dosage. I think it's a big deal. She said she wants to be very cautious.
Other than that, I think you'll see the range of good and bad effects on this site. I have been thinking of that old song, "My Sharona" but singing "my xeloda". Feeling kinda good!
Best, Kathy0 -
Hey y'all might want to touch base with laurajane in chemo for stage IV. Rough rapid onset of mets.
0 -
TxGigi - that is wierd, I was told to take the Xeloda within 30 minutes of food - it says it right on my bottle. I have been taking it about 15 minutes after I eat..sometimes, right after. My markers are coming down, so it appears to be working. I will check with my onc on this, though. I want to make sure I'm doing everything right!
Kathy -Thanks......dana na na na...My Xeloda....is now stuck in my head. LOL.
JeanieB - Welcome to the Xeloda crew. I am in my third cycle and so far it's been pretty manageable. Fatigue has been my biggest issue - no real problems with HFS, just tired. My mets showed up in my ovaries, omentum and small intestines - so I'm right there with ya on the wierd places list. Good luck with X. I have had a really good response in my TM's - hoping to see clean scans at the end of September.
0 -
It's in small print on the back of my bottle along with the warning Pregnant women should avoid contact with this medication ( well for sure don't need to worry about that one)...Take with food. Maybe every bottle from Kroger says that. I will check with my onco next week.
Mustang, Your omentum. I did not even know what that was until I was in my hometown a few months ago and ran into an acquaintance whom I thought had ovarian cancer, but she corrected me and told me omentum and I did not want to plead ignorance so went home and looked it up. How odd I had never even heard of that and now you are the second person I have heard of having cancer there. I suppose it is like BC, never gave it much thought until I had it and became aware of it and now it is like an epidemic.
0 -
I am on 14 days on and 7 off, told to take every 12 hours sometimes I take it at 9 and sometimes 11am, whenever I feel like it and at night usually around 9 - 10, I have been getting up at 8ish in the morning. Last month I was short 10 pills and I know I didn't double dose called the pharmacy and they shorted me gave me those 10 pills. I am tried, and grumpy and the hands and feet are starting to annoy me and my neck hurts. Getting scanned next month only been taking since july so we will see. The Se I am waiting for is the fingernail thing so whatever....0
-
MustangIA:
No, you are taking it right. It says DO NOT TAKE WITH FOOD. It means don't wash it down with a peanut butter sandwich LOL. Wait 30 minutes AFTER you eat.
When you take antibiodics it states take with food. I usually have milk and crackers with anti's.
0 -
Well crap, why does mine say take with food? Fingernails!?.....I have not heard of anyone that had nail problems with Xeloda. I certainly hope not, mine are still not completely normal from the Abraxane and that was 2 yrs ago!!
0 -
I have been in Xeloda for about 15 months. I have had every se listed.
Nobody has said anything about mouth and nose sores. My nose hurts all the time.
I have dry eyes and watery eyes! I was told that watery eyes are a symptom of dry eyes??? Nothing surprises me anymore.
When my hf gets bad I stop the Xeloda for a few days. I have never missed more than 3 days. At first I would call my onc and she told me to do this every time so now I am my own Dr. Ha
Good luck to everybody. And thanks for this thread!
My last scans showed some healing of the bone mets, but my TM were up. I will have scans again in Oct. I think this is working for me because I have not had any bone pain in about a month!
I am being treated at MDA.0 -
Yay, Betty for your healing and improvement! You're a tough cookie. Have they never decreased the dosage?
I really hope I get to stay on this as long as you have. Surely, I will have more SE's than I do, but all in all, I am happy.
Mary, my fingernails are thriving and healthy but toenails are a shame. No lamisil for us chemo ladies, might hurt liver. I apply local anti fungal but the nails still shred. Sheesh.0 -
Kathy, And that is from Xeloda? My toenails look like they have toe fungus and they never did grow back all the way....a lot of those either fell off or the podiatrist removed them when I was doing abraxane. I did end up with stronger nails than I even had in my life after it was all over. No antibiotics or anything will help since it was a direct cause of chemo.....but no one told me anything about Xeloda affecting nails and I know women from the office I go to who are on it and their nails or fine....but then again we are all different.
Hi Bette, I put vasoline in my nose at night. Glad the bone mets are hearing. Have you seen an opthalmologist for the watering eyes....they can put these little stints in the tear ducts that really help. Hip hip hoorah for MDA....I went there for an opinion and really was impressed with the place and still stay in touch with the onco I saw there. If this chemo doesnt work, I plan on going back.
0 -
No, Mary, I'm thinking I have residual toenail gunk from Abraxane.
0 -
Kathy, Whew. I really hated those funky nails.....especially when they got to the point where they were oozing and smelled like rotten meat.
Oh, it really makes no difference, but my real name is Marybe.....people always think it is MaryBeth when I fill out forms and the th got cut off and on here everyone thinks I am Mary and added a be , but I am just not very creative when it comes to thinking up names so I used my real one, Marybe. It was my great-grandmother's name and also her mothers and my mother resurrected it.....boy, did I even hate that as a kid.
0 -
Marybe, I am lazy, but I can type 6 letters for my coumadin pal. Life is so much better without lovenox. And a whole week off xeloda, what more can I ask?
What's the current thinking on chemo brain? Real, or no?0 -
Chemo brain is alive and well. For sure it is real. Often referred to as CRS. I make lists and then leave the house and discover I have forgotten my list.
To cut down on letters, you can just call me MB, that is what my friends do.
Did you say NO MORE SHOTS? That probably refers to both kinds huh, since you are on a blood thinner. That is not why I no longer drink though.....I just lost my taste for it after chemo. I used to love dry white wine, but now wine burns going down. However I do like drinks on the sweet side now like margaritas or bourbon slush or something like that, but seldom drink these days.
0 -
I have chemo brain for sure. I HATE it when I make the list and then forget it!! I also hate when I make the list and LOSE it!! Cant remember what I did with it! Whaddya gonna do?
Judie0 -
Is it just me or is the diarrhea random, like sudden at 2am?
0 -
Well this is all very interesting! My bottle says in giant letters "TAKE WITH FOOD". My onc told me to take with food. The nurses told me to take with food - that if you don't, the stomach se's would be MUCH worse. So I take mine immediately after eating. Also, no one ever told me anything about 12 hours in between. I take it with breakfast and dinner, which is approximately 12 hours apart, but not exactly...close enough for me. Usually I eat breakfast around 8:00 and dinner around 6:00, so -- to me anyway -- what difference would a couple hours make?
I have another area where the skin became loose and then fell off. Same foot, but this time like under the big toe. Still no pain really, just tender, but I assume that is because the new skin is exposed. At least this area was smaller than the first one. This is just the most bizarre se to me!
Kathy: Sorry about the diarrhea in the middle of the night!! Not good! Hope you're feeling better this morning.
Mustang: Love your new photo!!
Jeanie and Bettye - welcome to our thread!
0 -
Thanks, Lynn! I finally figured out how to set things up and add photos, etc.
That is so wierd on the foot thing. It amazes me how much we are all reacting differently. I pulled out my bottle again last night and clear as shit it says "Take within 30 minutes of eating", and it doesn't say anything about 12 hours. I usually take mine around 8:30 and 6:30, so we seem to be waiting about the same amount of time.
I have a question for everyone - anyone having wierd pains in random places? In cycle 1, I had some pain around my left foob, off to the side in what appeared to be my rib area. Tender to the touch, painful when I blew my nose or took a deep breath. My onc said it wasn't likely related to Xeloda, but rather to constipation (I struggled with that early on) as the bowells take a turn right in that area. Anyway - I did the whole magnesium citrate and cleared myself out and sure enough, it went away. Fast forward to this round - same thing happened on my left side this time and I'm not constipated...been more than regular this round if you know what I mean. It lasted about three days, still a little tender to the touch today, but not sharp pains. Just wondering if it is a side effect afterall. My bonescan in June was clean, so I don't think it's cancer, just curious.
0 -
I had to think about a minute, but now I know....you remind me of Meg Ryan in that photo!!
The only weird, unexplainable pain I've been having is randomly my toes will hurt like crazy! Almost like a stinging sort of pain. Lasts just a few minutes and then it's gone. Haven't had anything in my side/rib area. Hope yours is just indigestion or something "easy" like that.
0 -
Mustang: Just saw your reply to another post....you said you take 25mg of Ativan...or did you mean 2.5 mg? Just curious......
0
