All about Xeloda
Comments
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lizlemon-
Keep on pestering them! I tried Ritalin but because I also have ILC cells in my stomach (woohoo), I had stomach pain so it didn't work for me. I just heard about a patch that I wanted to try, but my Onc wasn't comfortable prescribing it, so now if I want to try it I have to consult with a psychiatrist. What a pain in the ass... I have been on X since February and I am soooooo tired. I only work part-time. I don't know how you do it. Kudos to you! People also say to me "well, you look great!" Really??? Sometime I just smile; sometimes I say "it's a thin veneer," and sometimes I say, "Well I feel like shit!"
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Stella,
I never got headaches on Xeloda. I did notice a few new very noticeable freckles pop up on my face/body, but that's it. No total skin discoloration. It's weird - the first time I had chemo 13 yrs. ago - I had this crazy, noticeable and big freckle pop up on the pad of my thumb. Rectangular shaped. It faded to nothing when I was well. Just before I was diagnosed again - guess what faintly started to reappear. Now - it's very noticeable again - ever since I started the Xeloda.
I hear you on the quality of life. Dealing with all of this sucks with a capital S. When I have to lose my hair again, I am going to flip my lid entirely. That was so hard for me the first time around. I'm dreading it. I'm dreading everything really. I'm in a constant state of some sort of dread. Ugh. Sorry I am such a downer today - normally, I'm a lot more upbeat. This thing with the doc's office has just really gotten me pissed.
LL
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Not fair Liz! I hope your Dr gets back soon & follows up for you without you having to chase him.
I'm really tired too (trying hard not to be grumpy!) & I'm only on my 2nd cycle of X as well.
When I progressed while on Zoladex & letrozole the onc took me off those. Interesting you are back on an anti-hormonal as well.
I wonder if I should be too since I'm ER/PR +, or at least have my ovaries out?
Stella, I think I read about spots like freckles from X on the earlier pages, even inside your mouth! I haven't had that yet- hope I don't
kt
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To be honest, I am feeling like I am at the end of my rope, I feel nauseous, and to be quite honest like crap after just two cycles and didn't even make it through my second cycle before they put me in the hospital I am having abdominal pain and cant eat much of nothing I know I'm stage for and I need to fight and I'm trying but this last week has been horrible I sit here crying while typing because I feel like a big baby having a pity party for herself when I am used to being the strong one . I know in my mind its a doable treatment but right now after this week and really bad HFS and tummy issues I need ones to tell me its gets better silly aren't I? I am by know means trying to scare or bring people down but I had to rant btw, I was taking 3000 milligrams a day 14 on 7 off, so Im thinking they will do a dose reduction, is that what anyone else thinks Sorry for the rant.Deb
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Sorry its been so hard for you Deb.
Isn't it weird how we're all different & these drugs affect us so differently.
I hope the dose reduction helps. I hope you feel better soon
kt
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Thank You KT, and yes it is weird haha but then again I guess this a part of every cancer patients new normal0 -
I was on it for 8 months and didn't work had progression...was 2 weeks on 1 off 4,000 a day...got H&F syndrome, so annoying, slept all the time, went off that and went on infusion....good luck with it, vent, cry, have a pity party and invite whoever you want...it is ok....our bodys are made for this poison, crap!!0 -
I hate asking this when so many of you are dealing with horrible SEs from Xeloda, but...my mother is concerned about the fact that the few SEs she was having have completely disappeared. We have read on more than one occasion that side effects mean the meds are working and though I don't think this has been backed up scientifically, we can't help but worry. Her SEs were fairly mild to begin with: some redness and thinning of the skin on hands and feet and some peeling/cracking on feet and darkening of the toe nails. She also had some irritation/pain when walking. Her onc gave her 3 weeks off between cycles instead of her usual 2 off a couple of months ago to try to keep her feet from getting worse. Since then she hasn't had anymore SEs except her toenails are still dark. That's it -- everything else gone.
Anyone else have their SEs disappear after some time on Xeloda?
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MomPsych - I did keep bugging them, and they are finally going to give me the Ritalin to try! YES.
KT1966 - I'm ER+, so when I got dx'd with Stage IV, they put me back on Tamoxifen right away along with Xeloda. Then, my uterus decided to grow a rare endometrial cancer, (which I really believe was as a result of the tamoxifen), and they did a hysterectomy on me in including taking out my ovaries. My tumor marker dropped by HALF after they took my ovaries out. I wish to God someone had TOLD ME to get them out sooner!!! I knew that was always an option, but my thinking was that I didn't want more surgery if I didn't need it, and I was afraid of menopause, quite frankly. I figured if no one was telling me to get them OUT ASAP - then I was ok. My CA-27-29 was low to begin with, something like 24, and then it went down to 12 after the surgery. And even with no ovaries, I am on an AI, because even when you have no ovaries producing estrogen, I believe the adrenal glands can convert (testosterone, progesterone??) into estrogen in the body.
Deb - I'm so sorry you're having bad SE's. They may lower your dose, and/or, they may have you do a 7 day on/7 day off schedule. I've only ever taken 2000 mg. a day 14 on, and 7 off. He just lowered me to 1500/day 14 on 7 off.
Golden Girls - What tests has your mom had in the time since her SE's disappeared. I don't think there is any evidence of this, as you noted...so I'd be more concerned with where her tumor markers are at, how they are trending, how her scans look, etc. And if those are all stable, I would say, thank god she is not having the SE's anymore. When I first took Xeloda - I would get terribly constipated. After the first few months - that side effect completely went away. I've only had the slightest bit of progression in the lungs (a few millimeters - so teeny tiny), and my bone mets have been stable, and my tumor marker is currently at 12. So - I would say Xeloda is DEFINITELY working for me in spite of that. I've never ever had the Hand/Food Syndrome either. Never. But it's working for me.
In my mind, it's kind of like feeling that if you don't have morning sickness while pregnant, something is 'wrong'. Not at all - you just got lucky. Hopefully, that's the same type of situation with your mom.
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Wow, Liz, I think I'll be talking to my onc next time I see him (11 days) if I should get my ovaries out.
He had mentioned a trial I may be able to go on in the future which requires you to be post-menopausal (palbo-something) so it might be in the cards anyway.
Since I stopped the zoladex & letrozole a month ago I haven't had 'the curse' back, don't know how long that takes- but maybe I've been pushed into menopause now anyway?
I'm glad you got the ritalin! I hope that goes well
kt
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Hi all I am on my 2nd cycle day 9. I am hoping it gets better but nothing yet. I am tired all the time and the achs and pains don't seem to get better. I have one good day and then 3 bad days to follow. I am seeing my onc tomorrow I hope he could shed some light. It also does not make it easier working full time with this disease but when you have kids tuitions and bills up your ass you don't know what to do. I really did not expect to get sick at 37. I have been battling the beast for 5 years. I am at my wits. It's so hard I am just so frustrated right because it really is not fair... I just can't stop crying and feeling sorry for myself. I am usually strong. Sorry for being a bit crazy today.
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Hi Stella.
Sorry you are still not feeling good. I hope the appt with your onc goes well & you get some answers & help dealing with your se's.
I'm on day 10 of my 2nd cycle- not doing too bad- just tired ++ & have just gotten a mouth ulcer today, so I will gargle with baking soda/ salt in water & hope I don't get any more...
kt
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Clare64, my breast oncologist at Dana Farber is Jennifer Ligibel. Very nice. My oncologist here in NH gave me compazine for nausea at my "chemo talk" and said to take it right away when I first felt the nausea. Of course, day 2, I felt it and waited all day to take the pill because it said it caused dizziness and sleepiness. I finally gave in at 3pm and kicked myself for not taking it sooner. I don't have the nausea every day. I'm on my 9th day of starting this pill, and it's happened about half the days I've taken it. I've tried not having my cereal one morning, and having a bagel instead, thinking the milk was causing it, I felt better that day, but then decided to try the cereal again and was ok. Who knows? I do wait 30 minutes after eating now, before I take them, instead of taking them immediately after I finish eating. Not sure if that helps either.
I am having very dry skin and have been lotioning with the Udderly Smooth (they also suggested Bag Balm) and Gold Bond. My feet are starting to hurt. I haven't had the diarrhea yet, thank God! I take colace daily, so maybe I'm just going to be normal with this treatment. : ) I do feel a bit tired (hope that doesn't get worse) and the past couple of days, I've noticed I got dizzy when standing after sitting. Is anyone having that issue? I'm seeing my oncologist here (I only go to Boston when I have bad scans, which unfortunately, has been after the past 2 scans, my oncologist here keeps in touch with her too) next Friday, and I have my check up with my primary the following Friday. I hope the side effects don't get worse as I go along with this. I'm going to St John's Virgin Islands for our 31st anniversary in October. I'd like to feel good then!
How does everyone feel the week they are off? Does the nausea and diarrhea stop??
I hope everyone is having a good day today!
Hugs!
Lynne
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I'm so sorry you're having bad day Stella. I feel like you - I don't WANT to work full time - but I'm not able to stop right now. Even STD at 60% of my salary would have us in the poor house in no time. I hope you get some relief after talking to your Onc.
Lynne - I have read that women feel sometimes worse on their week off for some reason. I always tend to feel better myself, a pinch more energy, etc. That week off just seems to fly by, though. I hate being tied to taking pills, and making sure I eat before. I know it is a simple thing, but I just hate it. Probably a rebellion against the cancer in general. At this point, after being on this nearly 2 years, I feel like I'm always on it. The off weeks and on weeks just run together in my mind.
Please make sure you do eat before you take the pills. The reason for eating is so that the Xeloda won't break down too fast in your stomach - causing even worse SE's.
Today is day 2 of my Ritalin. So far, I'm cautiously optimistic. I feel like I have more energy, but I don't have that jittery, buzzy, awful feeling like with too much caffeine. I also hope that I'm not simply experiencing a placebo effect due to my high expectations.
Hugs to all!
LL
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lizlemon you are 2 years on xeloda that is great. I hope I have a very long journey with it to and I hope it is working. How long are people on this med generally. I know everyone is different but just curious what's the longest u seen someone in it. Also how long did it take for your body to adjust to it. Today I feel a lot better not to many achs and pains thank god. Hopefully my body adjust and gets used to xeloda. I am generally really good with meds I tolerate them well. This one is a bit of a challenge not so much as pain as the flu like symptoms. Your whole body being achy....
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Good morning all from New York. So I seen my onc. I finally found out why am I tired all day, and achy and headachs and dizzy even my coloring of skin was with yellow or green I through it was side effects of xeloda. I found out I am anemic. At least I know what is wrong and I could try to fix this but not knowing is the worst. The last couple weeks I was so sick I thought it would be it for me. But I know I could take my iron vitamins and eat food with lots of iron and the onc gave me a shot of something help fix the problem. I have to go back next week to check my blood work again hopefully it will be better. It sucks all these meds help with one thing and destroy another. It is just terrible to live like this. Cancer really sucks big time. It sucks everything out of u...
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Stella,
I'm so happy you got to the root of your SE's! The shot he gave you is likely the drug that will stimulate the bone marrow to make new red blood cells. I bet you'll feel lots better in just a couple of days.
As far as how long I've seen people here on Xeloda - I think 3-5 years. They were outliers. But it seems to be more of an average time of a yr. to a yr. and a half on the long side. And a few months to a year on the short side. Now that I'm approaching 2 yrs., I'm scared it's going to stop working, and the other shoe will soon drop. No matter what I'm scared, really. No way around it. I get good news, I think that's the last good news I'll get - I'm pushing my luck. Any sign of bad news, I think OMG - this is it, it's not working. Can't win. Rarely, I think screw it - it is what it is, and I really can't control it - so just cool it, ya' know? I do what I'm told, and try to just relax. (Doesn't last long - but I try).
Strangely, and luckily (because that's all it really is - luck) - my red blood cells have never taken a dive on Xeloda. My white count was 2.7 last time, but he didn't give me shots for that. But that's about as low as my white count has gone. Usually it's 3.4 down from my "normal" of 4.0. So - not so bad either.
Hugs, Stella - and hope you are feeling right as rain soon.
LL
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Liz Lemon- I feel like you are in my head. I too have been on Xeloda for a while (19 months). Every appointment i fear for the worst, that it will stop working and I will have to move on to the next drug. I have almost been 4 years since my original diagnosis and 2 since my mets diagnosis. I can't get out of my head that on my mets diagnosis, they said I had a year to maybe years left. With each passing day, those words get heavier and heavier. I love my life and am doing welll but it doesn't stop the fear. Nice to know someone else has similar feelings.
stellaratovsky- I hope the shot helps and you feel better soon. If it doens't get better you might ask for an infusion. when I was undergoing my inital treatment, I would receive Iv infusions of iron. It was awful to look at but boy did it make me feel better. Rest up.
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leftfoot -why was the IV infusion of iron so awful? I am always borderline anemic even though I take iron twice a day. I was wondering about that infusion. Wish I could be stong to the finish like Popeye....
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Mompsych- Only because it is very dark brown and it looks awful going into your body via the IV. No SE at all. I loved my infusions as I always felt so much better. But the visual was hard for me.
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left foot, thanks for the info! I'll talk to my Onc about it when I see him.
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Shoes and H and F. In the middle of my third round of Xeloda and mainly have lots of aches and a rash but since we are currently having Fallgust ( fall in August) I have to give up my comfy sandals. Yesterday, I wore my old comfy shoes with rubber soles and with socks. By the middle of the afternoon, my feet felt as if they were on fire and when I took the shoes off, the bottoms of my feel were bright red. Not sure that this is H&F, could be the old Neuropathy from Taxol acting up,
Are there shoes that people have found that allow your feel to stay warm and dry but not cause problems. I use lotion on my hands and feet but would like to do anything I can to prevent this from becoming a problem
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Crone - I hate to say it, but it sure sounds like Hand and Foot syndrome. I never had that SE, but lots of ladies here have. If you use the search function, and search for "HFS", it will bring up posts where likely ladies are sharing tips for dealing with it. Also - if you page back some in this thread, you will find good tips also. I'm so sorry you're going through this added pain.
Leftfootfoward - thanks for letting me know you're out there. I hate it that you have the same fears I do - but it does help to know that I'm not alone.
To anyone following my Ritalin 'experiment' - the 10 mg. in the morning didn't really do anything for me, thought I reaaaaaaally wanted it to. I took the liberty of trying 20mg. - and that has made all the difference so far. It's only been a couple of days - but I can honestly say I don't feel like I'm going to literally pass out sitting up. Hopefully, this holds true going forward. Fingers crossed, and I will continue to keep you all posted. Friday was day 7 of X. And Friday night, I "crashed" - was struggling mightily to stay awake in my recliner at 6 p.m. Finally went to lay down, and passed out for 3 hrs. One of those deep, slobber on the pillow sessions. Woke up and forced myself to get up so I wouldn't be up all night. Turned out that wasn't a problem. Slept late into Saturday morning, and then was exhausted ALL that day still, struggling to stay awake, in spite of taking 10 mg. of Ritalin as prescribed. Sunday - I said - enough, and I tried 20 mg. It helped yesterday, and so far helping today. I feel 100 times better being alert and able to function without a fight. It's amazing what we get used to over time. I think I'm forgetting what it actually feels like to feel rested and have any energy at all.
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Crone--I also think it could be HFS. I had to stop on Day 11 of my 3rd cycle of Xeloda because my feet were beet red, swollen (with blisters on the balls of both feet), and becoming increasingly sensitive. I stopped on Friday and yesterday my feet looked much better although I'm not back to normal yet. My oncologist told me she'd rather have me end a cycle early than have to start the next cycle late because I need time to heal my hands and/or feet. She also said she'd cut back the dosage for Cycle 4. I find my feet feel best in shoes that have a lot of cushioning so I'm wearing my Nike sneakers. I read somewhere online that you want to avoid friction on your feet so I'm not wearing sandals. Hope things have gotten better for you since you posted.
LizLemon (love your screen name!)--I'm glad the Ritalin is working for you. For now my fatigue has actually gotten better but it's early in my experience with Xeloda and I know the effects can be cumulative so it's good to know you've had success with Ritalin in case I need to use it in the future. Have you had bad fatigue the whole time you've been on X or has it gotten worse over time? Of course at this point, I don't even know how long I'll be on X. I'll get my first scan in mid-September to see if it's working. All crossables crossed that it is!
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Just starting my week off xeloda. Nice to not have to 'remember' all the time
I hope the ritalin is going well Liz. Stella- I hope the anaemia is going & you are feeling better.
My feet have been a bit sensitive today as well- I'm putting lots of cream on them. Hope it doesn't develop into H & F.
Take care
kt
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Thanks for the info Lizlemon. I am on my last day of pills for my first treatment today. I had nausea every other day the first week, I noticed a rash on my chest a few days ago, and my entire body seems to be getting overly dry. The compazine they gave me did the trick for the nausea. I've been lathering myself up with lotion, twice a day, and my hands at least 4 times a day. Other than that, I'm doing well. Of course if the off week is the worst week for me (the oncologist did say that's when the Hand foot issue usually starts), I'll find out starting tomorrow.
I see my oncologist for blood work and an appointment on Friday. Hopefully, that comes back ok.
Good luck everyone!
Lynne
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Now I'm done with 2 cycles (nearly) I'm noticing a pattern-
Constipation day 11 (take a coloxyl +senna)
Nausea day 16 (bad enough to take a domperidone)
Both cycles
Otherwise just low grade nausea & fatigue the rest of the time. My feet and hands are getting more sensitive now too, so lots of MooGoo (like UdderlySmoov)- no blistering just red & small cracks...
Hope everyone else is going ok
kt
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Hi all, glad to hear some are doing better and sorry some of you are having such a hard time with SEs. I had a really bad week after my third round and ended up getting rehydrated and IV Zofran and decadron. I learned my lesson, if it is bad for more than two days I'm going to the hospital. I took a week off to recover and am now on 2000 mgs 7/7 - I'm hoping the reduced dosage helps. I noticed today that I have really swollen ankles - does anyone else have this or know if it is serious?
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Doesn't sound like fun Clare
I haven't been doing this long (2 cycles 14/7) so I can't help you with swollen ankles- I haven't had that (yet?!)
I hope you get some answers soon & the new dosage is better for you
kt
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Hi all- just started my 3rd cycle today. Onc visit yesterday.
How long did it take for you to start seeing results that the xeloda was working?
My tumour markers & ALP are still high- I guess its early days. I get a CT scan in 4-5 weeks, so hopefully that'll show improvement...
I'm very tired at the moment. Mind you I have been busy spring cleaning as we're putting our property on the market (too much to look after while I'm not 100% -6 acres + animals)
and working part-time. I'm looking forward to bedtime, & its only 5pm- still have to make dinner etc!
Take care
kt
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