All about Xeloda
Comments
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Ivebeen eating a lot of crackers...I started a new ant nausea pill, it worked but knocked me out, very disoriented but better than throwing up
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Reality - When I was taking 4000 mgs of X I had trouble eating much of anything, I could never stand meat, so just tried to get protein in other forms. I was finally cut back on the dosage and I could not believe how much difference it would make. Just try to eat whatever and whenever something sounds good. I know it may sound good and you start on it but have to throw it out because it makes you feel sick. I hope it gets better for you, if not ask for more anti-nausea medication. I do take Zofran 8 mg and have Promethezine if I need it also, which I have taken a couple hours after the Zofran and it helped. Nothing seems to help me with the food issue though so if you find something you like just stick with it.
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I'll ask again if there is anyone who has trouble with ankles and feet swelling. Even my hands as my rings are so tight. THis is my off week. I start my Zeloda again in a few days. Called my oncologist yesterday and she was in clinic seeing patients but didn't call back or have one of the nurses calle back. Would never have left me hanging like this with my old oncologist.
If you have had the swelling, what were you advised to do. I am on 4000mgs. Take 20 mgs. Lasix as it is for the fluid in my left thigh, but have never had swelling like this; not even on Abraxane.
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Naniam - I can't help with this I have never had that problem. Hope someone can help you out with this.
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Reality, the first cycle taught it to me, have enough in your stomach!! I suffered more from ulcers forming from X than nausia, agghhh the pain you know it's not fun at all. Yep, I too tend towards carbs as the stomach needs the starch to protect itself from X's SE's. I eat lots of bulghur, instead of rice, toast made with wholegrain bread & as afternoon snack have plain yoghurt with roasted chickpeas (can find them ready packaged in Turkish-related groceries). Listen to your stomach, X is strong, you need to think longterm. I prefer meatballs (lamb only) to steaks, I admit. Find turkey & fish tolerable to red meat. Hard boiled eggs are also managable. Cancer nutritionist suggested boiled 2 eggwhites + 1 yolk in the mornings, I eat only 1 every other day. I have veggies with carbs, more carbs on the plate I admit
. Now's weather's getting better, start exercising to keep my shape. Can't tolerate anything sweet at all. Ebru
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Naniam, do you consume any salt / sodium, cos I was warned against them with X? I took it out of my diet completely. I have only minimal swelling when I am up on my feet too long. My rings don't fit any more, too..MO not worried about that as nothing too major yet. Hope you can check that out with your MO fast.
Ebru
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Hi
I am day 5 of my week off for cycle. 7. I'm on 4000mg.
My hands and feet (tops) are almost black and my palms look like they belong to s monkey.
Is this normal! Can I do anything to fix them?
I'm also struggling to ear. Any food makes me nauseous!0 -
KeeipngFaith: If I were you I would call my MO before I take any more Xeloda. You might need a dose reduction and/or some time off the medication to recover. I will start my 13th round in about a week and have not had symptoms you describe.
Naniam - my feet are slightly swollen at night but are back to normal by morning. I take 1000 mg AM and 1000 mg PM.
Maybe some others can help with the nausea problem.
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I saw my onc. yesterday. She's putting me on another round of Xeloda. She said if I had bad diarrhea again that I should call and they'd take me off it. I always think of what questions to ask after I leave the office. I was wondering what they would do if they take me off Xeloda. Try something else? Any input would be appreciated.
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For diahrrea, I have been taking probiotics. I'm not sure if that's the reason I haven't had a problem, but so far so good. My oncologist says it couldn't hurt.
For nausea, I have certain foods that always seem to help, including saltines or oyster crackers, strawberry jello/peach fruit cups, pretzels and honeydew or watermelon.
I always keep a Stauffer's frozen chicken breast/mashed potatoes entree in the freezer at work so I have something bland on hand to eat for lunch on the queasy days (the roast chicken variety, not fried). I can usually eat it without any issues.
I drink coffee during my off week, but tea during my on week.
One thing I have discovered is that it's important not to get too hungry. When my stomach is empty, I get queasy. So I eat frequent little snacks.
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Thanks for the advice, MartyMart.
Laura
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I am on 14/7 just finishing the first cycle (2000 mg twice a day). No nausea so far, a bit of burning feet and hands. I am using the Udder Cream that I got in the package. It helps me. Thanks to this thread I knew that side effects may occur on my week off. Diarrhea (sorry) was really bad the first day off pills … took Imodium and Imodium again and again.
Overall I feel much better on Xeloda than without it. During my 6 weeks break after Red Devil and Co, everything grew back so fast and painful. I am in much less pain now so I hope it is working. Xeloda is my third chemo and I find it much easier to tolerate but I learned that things can change very quickly, and unfortunately, not always in a good way. I am positive. I am positive. I am positive. I am positive…....
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Jeanie - thanks for the advice and support. I will go with cravings and see how it works. P-nut butter seems to be the item of the a.m. today. At least I will get my protein in. I do not want bread or jelly with it - just pnut btr and coffee.
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Thanks, Marty. I am going to pick up some stouffers - sometimes I want something, but by the time I cook it, I no longer want it. Pre-cooked sounds good. There is also a lovely little cafe in my village - only 3 tables, but they have carry out for complete home-cooked meals. Their half chickens are great. Maybe I will give that I try. I know its more costly, but if it makes me feel better and keep going, it's worth it.
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Nan - so sorry about your onc office. I am so blessed to have an amazing team. I live in a very rural area. My onc travels 2 1/2 hours from vermont, every Thurs and Fri., to see patients. The center is also staffed with 3 onc nurses and two NP's. The receptionist is amazing, too. One time I left a message, I had previously left messages on my son's phone - so, just by habit, I said, "love ya" at the end of the message I left at my onc's office. Too funny - now, every time I leave a message or the recept. leaves me one, we end with "love ya" and a laugh. I hope your office calls you soon and helps with the fluid retention.
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svetik - thanks for the update. I am in my first week, so it helps to talk with those who are just ahead of me. Yes - so much better than AC/Tax, but still not great. I know just what you mean - this is my third chemo and I know how quickly all can change. Being positive is tough - I actually started a letter to my onc today, to let him know I decided to stop treatment - it was one of the choices he gave me last time I saw him. My trip. neg. is so unresponsive to chemo. It almost seems that it thrives on chemo! I know it does not, but it feels that way at times. He did not come right out and say it, but it felt like he was actually pushing me to stop treatment. When he entered the exam room, he told me it's hard when to recommend that a patient stop treatment. I had not even asked him anything. He had my CT scan results in hand and just looked down at them when he said it. When my onc was leaving the exam room last time, he said, "hang in there". He is very friendly and accessible. I believe, however, that he gets down over negative prognoses. Whenever I ask him how he is doing, he says, "Oh, I'm ok". Anyway...he said I could take a "chemo vacation", but that the lesions on my lungs would grow quickly. He said Xeloda is "worth a try", but that he would not "expect a lot". I am only on 1000 mgs a day. It feels like he just prescribed it to help me have some hope and to let me down a bit easier when my next scan is not good. I do not mean to sound negative - I am just being realistic....Thanks for listening.
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stagefree - Thanks so much for the great nutrition advice! I exercised a lot yesterday and felt better last night. I was able to eat more and slept well.
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I have found many supportive threads, but have to say that this is one of the most supportive I have ever been on. Thanks to all!
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Reality - Hope your appetite picks up soon! Pnut butter and coffee doesn't sound like much. The chicken sounds good. I have this week off from Xeloda and start my 13th round next week. I have my Herceptin IV this week.
Wishing you all the best!
Joy
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Has anyone lost their sense of taste while on Xeloda? I am on round #13 and this is the first time
I cannot taste. This week is my week off. I am on a 14/7 schedule, 1000 mg AM and 1000 mg PM.
Any suggestions would be appreciated.
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Joy and Stagefree - Thanks. I found the perfect warm-day meal! I suddenly craved a chef salad from my local deli. Their produce is fresh and salad is packed with olives, eggs, turkey, cheese (swiss and amer), spinach, cherry tomatoes, etc. I got the salad and ate it by the lake across the street from the deli. I am learning that if I wait to eat something, I often no longer want it. I was so glad I craved something healthy.
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Hi, JoyE!
I am on the same dose as you, and have been on X since November 2012. I have not lost my sense of taste, but as some others were describing, I find myself getting really hungry, and then staring at food in the pantry and fridge and absolutely nothing looks good. I just thought it was me, until I read the posts here.
I noticed a bit of swelling in my ankles, but I'm not 100% sure if it's from X, or sitting in my office chair all day, and not walking around.
I don't get the nausea...just fatigue. And when it hits, it's just overwhelming. Right now is my off week, but I have surgery coming up Thursday (hysterectomy w/ovary removal), so I'm thinking onc will tell me to stay off until a good week or so after surgery. Right now, I am more scared of losing my ovaries in one fell swoop than anything else. But the hysterectomy has to happen. I am 46 (will be 47 in July), and premenopausal. Needless to say, since I am er/pr+, I can't take any hormones after the surgery.
Anyway, Ebru, I have not noticed pain specifically on the off week...0 -
Reality, this sounds yammy! I hope you can stay on Xeloda longer as I hope for myself too. I have my blood test and appointment tomorrow.
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Hello Liz: I am hoping my taste comes back during my week off. I don't have any problems with my appetite so far. I wish you well on your upcoming surgery.
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I will be starting my 4th cycle of Xeloda and I honestly feel better on than off the Xeloda - I know this sounds strange but I have more energy when I am on the Xeloda. I am very fortunate in that overall I haven't had lots of nausea - nothing that a pill didn't fix and no diarrhea. I too can look in the pantry or freezer and simply do not want food and do not want to cook. Hard to cook when nothing taste or sounds good. I feel I have some balance issues on this drug that I didn'to n the others.
This is also my 3rd drug - we really need to slow down my very extensive bone mets so I'm with some of you in that.
I got Xgeva last Wed. for the first time. I think my problems are from the Xgeva - not Xeloda. I didn't have swelling of my ankles or feet until then. Last night another "strange" episode. Honestly, last night when I was finally able to close my eyes, I wasn't sure I would wake this morning. Have any of you ever had "chills" but no fever? I just could not get warm, I was freezing. I had really bad pain in my back and left femur (at one of my surgical sites). Used Voltaren gel, lots of my Morphine breakthrough meds over several hours and then finally time for the 60 mg. Morphine to get things under control. I got warm but had to be careful of the covers or I would get cold again. It was just a very strange episode; never had anything like it. The pain seemed to start after the chills; not as if I was in so much pain it gave me chills. My bones are so sore since I got the Xgeva - worse than the Zometa in that area.
Will call the oncologist tomorrow, again, and tell them about this episode; ask if my oncologist remembered to order the Xeloda that I am supposed to start on Tuesday.
I have also found this thread offers great support - when I first started the Xeloda there were people here for me. Haven't posted lots to some of the newer gals on the thread because I haven't had the problems some of you are having.
Good luck to us - hope we all get a very long run from Xeloda, I'm counting on it.
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Nan- thanks for your support and good wishes. Yes, I have had the chills with no fever. It was actually when I was on a one-month break from chemo. I even bought a heating pad, just to try to get warm, but it did not work. Each episode ended with a drenching night sweat around 3 a.m.Then I was really freezing as I was wet! Onc ran blood tests, UA, sepsis screening, etc...nothing showed up. He put me on a broad spectrum antibiotic as he felt there may be an infection somewhere that could not be detected. I took the 10 day course of antibiotics and the episodes stopped.
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Reality - I am with you on the Peanut Butter, I have my own jar that I just take a spoon and eat right out of the jar, one or two scoops at a time, if I can stand it. I try and keep something in my stomach at all times, I am also taking Taxotere and that really messes with the taste buds and nausea. When I was on Xeloda alone I described it to be just like morning sickness, if I kept something small in my stomach I did much better than a larger amount, when I eat to much I feel sick and to little I feel sick, so I have just tried to find the amount that works. I hope it gets better for you and that the X will work for you. Keep your chin up and check in here when you can. Hugs to you.
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Sherry - thanks for the pill aversion post. I know it's all in my head, but I really have to gag them down.
I'm almost at the end of round 2. Fatigue just showed up.
For those having leg/feet swelling, try putting a couple of pillows under them when you nap.
When I found out my cancer had come back, I bought myself an adjustable bed with a latex mattress. It's amazing how small shifts, create relief. I bought the bed platform and mattress from
Amazon. About $1200, it was shipped to me in about 3 days.
Wishing everyone a good day!0 -
Just checking in. Xeloda is still working! My TM has gone down again! The 7/7 is much better for the HFS, I'm getting along so much better. The feet are still taking a beating but not nearly as bad as before. The hands are weird feeling but do-able.
Chills so bad I can't stand it then that triggers a hot flash. Oh yay. I've been in chemopause for 3 1/2 years now. It's better, but still there. I woke up the other night just drenched in sweat and freezing to death. I turned on my mattress warmer (LOVE that thing!!) and triggered a hot flash. So there I was covered in sweat from head to toe and laying nekkid without any blankets on.
What a weird adventure this has been. As long as it keeps working I'm game.
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Hi ladies .... I begin Xeloda tomorrow morning after breakfast. Had second opinion today that totally supports the use of Xeloda & something interesting was explained to me (you may all already be aware of this, so I apologize if you are). That was when you take Xeloda orally, it turns into 5FU once it hits the liver. By taking it 12 hr. apart, it's comparable to have 24hr chemo. The reason IV 5FU isn't as effective as Xeloda, is the half life is approx. 5 min. compared to 24 hr of two doses of Xeloda. The only way to get an effective dose of IV 5FU is to get it via pump continuously or daily infusions. Now the 12 hr. apart makes sense to me.
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