All about Xeloda
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YAY Leftfootforward!!!! So happy to hear good news, you go, girl!
Loveforlife, thanks for Interesting info about the trials & the Androgen receptor, will look into that. I understand about doing the trial while you're still strong, makes sense. Thanks also for telling me about Amazon for cotton gloves. I need to find out more about the genetic testing too. Scanxiety is setting in, day after tomorrow, hey! Trying to distract myself by painting flower pots - green with red dots, of all things, but fun, & I focus on something else for a while. The other thing I do before scans is refold my underwear & put everything according to color. You have to know I'm far from a tidy freak, so even folding underwear is wierd!
4th day off X & starting to feel better, just really tired, like my head is too heavy for my neck etc. I nap in the afternoon & get up still as tired. Aargh, not nice. But whatever, I have an entertaining book & I'll probably fall asleep reading it, & that's ok. So I get what you mean about the fatigue M360! So happy to hear X is keeping you stable!!
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M360 please ask for stomach ulcer meds from Onc.. Helped me wonders with the stomach issues.. Now feel nothing!
Fatigue.. Sleep on.. Body needs each bit of energy to fight the c-buggers, so be happy when you fall asleep.. You are doing help for yourself 😉.
Hugs
Ebru
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Yay leftfootforward glad to hear your positive results. Starting to have almost constant tingling in hands, feet, lips and the tongue. Will see if onc reduces dosage again or gives me an additional week off. Sometimes it just really builds up in your system.
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Seeing my MO tomorrow for labs and check for SEs and get ready for 3rd cycle. Having tingling in finger tips, fingernails are a mess still splitting and ripping and lifting off the nailbeds, and a sore inside my mouth, but don't know if these are related to current meds ... so hard to figure out, so hard to get the courage up to continue the meds knowing that the SEs MAY be related and MAY get worse .... but for right now things are NOT that bad, so I guess I just keep on truckin' as they say. Ebru, did the ulcer drugs help your nausea? They gave me omeprazole but it didn't seem to help much, so I quit taking it , but maybe it takes a little longer to kick in???
Well, I am seriously exhausted tonight, may not be making much sense. Heading to bed, will see what the MO says, and will check in with you all after that. Hope you are all doing well, staying as comfortable as possible.
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Congratulations Leftfoot!
M360 - Hang in there! I hear you about the fatigue... zzzzzzzzzzzzzzzzzzzzz... Hope the nausea gets under control.
Scans tomorrow after 5 cycles of 14/7. Results on Thursday. Hoping for stable.
Laura
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Hi All! I hope you handling the se well or atleast on your way! I have experienced major fatigue, of course that bugs me but not a big deal, My issue is nausea, dizzy and pounding headache, Anyone else feeling this way? Thanks for being here. I hope X kicks it to the curb.
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Starting #3 today. MO said "It's working!" - thought the tumors in my axilla and chest were smaller. I complained about the usual stuff, and she reminded me that the anti-nausea meds are to PREVENT it, NOT TREAT it!!! So I told her the ondansetron had given me such headaches that I was only using it if I just HAD to, and she told me that it doesn't work well that way, so she switched me to a different drug which the insurance will only approve 9 pills at a time for, so she has put in a request to give me enough to get me through a full cycle of xeloda. And my PCP increased my dose of methylphenidate (Ritalin) for energy - I was on half of the lowest dose possible, so she thought it would be OK to increase and we will see if that helps.
So Vicky, I was thinking of you as I wrote about the nausea and headache issues because if you are taking the meds correctly, you may get less nausea but still get headache, and if you still have nausea, there may be some other meds out there to try. My MO has suggested several other options for me, none of which I am interested in at the moment - will try to tough it out for now. So many of the meds cause dry mouth and for me that is worse than nausea because singing is the only musical participation I have left.
She had nothing to offer on the fingernail issue, and also the tips are numb but not under the nails. I don't think she understands just how painful it is to feel like there are sharp bamboo sticks under each nail, just waiting to rip the nail off, and the little splinters of nail catching on every item of clothing, including LE sleeve and glove and just making life difficult in general. She actually laughed and told me she was glad I was feeling better, she liked seeing me feisty and grumpy rather than placid and lacking in spirit like I was 2 weeks ago when I had the pleural effusions and ascites and not able to breathe or eat. She is right! I think the nails will just take time to get better if it was just the afinitor that was the problem. She didn't say if it was also a problem with the Xeloda.
Laura, hoping you get great results. Hoping for moments of beauty and joy for each of you today, whether it is a ray of sunshine, swirling snowflakes, or a piece of art or jewelry that you treasure - may it bring you a moment of happiness.
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Hi Linda-n3. I started cycle 8 on Monday. Like you I have had HFS issues. My onc has given me B6 tablets with this cycle and it has eased the problem in only 3 days. My hands and feet are not painful and not so sore. The skin is already renewing itself. I use Aqueous cream three times a day and I have to take 3 B6 tablets per day. It seems that the B6 gets rid of the toxins (waste products) produced by the chemo.You have nothing to lose by giving it a try.Good luck
X Helen
PS waiting on marker results due today. Fingers crossed
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Linda n-3,
I don't have HFS but I have exactly what you're talking about with my fingernails all of a sudden. Three of my fingers looks like the nail has pulled away from the nails bed. I thought I jammed my fingers without thinking, I have four fingers that are paralyzed from EDS and arthritis so when trying to pick things up they get jammed but my pinkies are where the nails have pulled away from the nail beds. Now I know it's the Xeloda because it's exactly what your explaining and it's never happened to me before in my life. I've kept my nails clipped and use a buffing system to keep the nails shiny and looking healthy even though their not. If I don't buff there are ridges on each nail. My Oncologist actually before starting Xeloda gave me instructions to soak hands and feet 2X daily for a minimum of 10 minutes followed by extreme creaming, and then gloves and socks. This has worked keeping HFS at bay but not my nails.
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Hi everyone. I just finished 6 cycles of Xeloda and had first scans last week. X completely eliminated everything on the CT scan, except for a small node near liver. Bone scan showed healing. Feeling great, glad to get a terrific report! Hoping X helps out for many months. I've been on it for 4 months now. My first chemo; maybe that makes a difference??
Still have hoarseness but I'm wondering if I have a slight touch of laryngitis. Does anyone find that colds and upper respiratory stuff holds on longer while you are on X or any other chemo?
Going from 2 weeks on, one week off to 1 week on, 1 week off REALLY reduced side effects. Hand and feet a lot better and I got rid of that pesty digestive stuff. Still have some nausea from time to time and my taste has significantly changed.
Thankful to be having a response. Prayers to all you who have gone on to other threads!
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Linda Hi!
Happy it is working!!! So far so good. Trust me, the SEs are manageable somehow.. it takes time to sort your way as far as possible from them.. still each of us is unique, so something working for one of us may not work for another…
About ulcer meds.. They are to protect your stomach from any pill form drug you are regularly using as they travel the digestive system, leaving their traces behind.. a chemical build up that needs to be stabilised so that your stomach doesn't become a chemical storage..Once that's established, the SEs related with stomach especially are reduced, in my case almost to nothing.. Before starting the ulcer meds, I had stomach pain & some nausea.. The nausea meds are separate, you need them additionally.. but hope that resolves in time too. About Ritalin, my MO resisted prescribing it, as she said X is such a complex formula, she does not want to risk any interaction with other meds.. Differences of opinion there..
Rockinlife, yes yes & yes.. because our body is weaker with chemo, flu etc are more dangerous.. please avoid crowded places.. no handshaking !
Vickib, occasional headaches & dizziness? yes yes & yes.. we are on chemo dear.. take things slow, rest, sleep, take your painkillers when needed & definitely your mood meds regularly.. the world is a much better place with them
In winter I quit polishing my toe nails as I am wearying my comfy socks 24/7.. I still have my manicurist visit me to cut my nails (not cuticles) and spoil my hands & feet bi-weekly. Figured, my finger nails are in much better shape. I had read somewhere polishing with high quality nail polish (mine breaths oxygen- inglot) helps the nails resist the HFS a bit (for some, even more).. maybe try that.
Started 16th cycle today.. Just two cycles on 1000mg / day 14/7, and now back on 2000mg / day 14/7.. I had so minimal facial rash this time, I suspected the dosage was too low, TM's raised a bit.. well I tried at least (MO never wanted me on such a low dosage in the first place). So, back with my regular Q10 creaming… I conclude SEs are in fact indicators tx is working, for me at least.
hugs all
Ebru
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Hi All,
Happy for all that are responding well to Xeloda. For me it was pretty tolerable. Got the bad news today though that I have progression in my spine, new spots on femur, right ribs, and slight progression in lungs... Sigh... So, I'm off to Ixempra weekly for 3 weeks, one week off. The bitch of it is there is a new trial opening at my cancer center, that I am "perfect" for according to my oncologist - except I don't have any easy sites to biopsy and the trial requires a new biopsy before entering.... So, if I want to try a trial I'll have to travel to NY or Boston. C'est la vie. Good luck to you all! I'll still be on the site, but not on this Xeloda thread.
Laura
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Laura, I hope the new treatment treats you kind & kill those c-buggers!
hugs
Ebru
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Best wishes on the next meds, Laura. So sorry to hear that you are willing to participate in a clinical trial, but can't because of needing a biopsy that they can't do at your cancer center. It is tough enough to get those trials going and to recruit patients willing to participate, and then there are additional barriers so they can't get the numbers of "subjects" needed to test the new treatments.
Helen, what is the dosage of B6 you are taking? I used it when I developed the CIPN, but my MO checked my B6 level and it was too high - and high levels can also CAUSE neuropathy - so I quit taking it and have not noticed any improvement or worsening of symptoms in general, except maybe a little over the last couple of weeks. It's so hard to figure out if things make the fingers better or worse because the symptoms fluctuate so much on a daily basis, and even throughout the day, depending on overall fatigue, overall pain, how much I am using my hands and fingers, status of the LE .... etc. But I am thinking a little B6 can't hurt!
Well, time to start thinking about the evening meal and meds. This whole coordinating food and meds is a royal pain at times!
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Hi Rockinlife. Fantastic news!!!!!!!!!!!!! Long may it continue.
Loveforlife. Good luck with new treatment. Let us know what thread you will be using so we can follow your progress.
Linda=n3. I take 50mg of B6 three times daily. If you take it with food containing B complex (Leafy veg, cereals , yoghurt etc) it lessens the chance of neuropathy. Neuropathy caused by B6 is reversible(unlike neuropathy caused by chemo) and is unlikely if you do not use it in excess. I can't believe how quickly it has given me relief. Still need to cream my hands but they are less painful. cooler and skin is healing round nails and fingertips.
Good luck all you x ladies. May all your results be good ones.
Have a good weekend, Helen
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Hey loveforlife, I'm so sorry to hear your progression - dammit, but I hope the Ixempra won't be too rough and will be effective!
Rockinlife, great news from you - may it continue so.
My scan showed stable. No changes at all - so yay, I'm dancing with the stable boy!!! I would literally be dancing if I wasn't so tired! Yesterday I hit my bed again at 10am, slept till 3pm, and then again all night. And still woke up tired. It's a little better today, I think the last time I was this tired was after the AC and rads.
Anyway, as many say here, for stable I'll put up with the se - am sooo relieved to find something that is stopping the growth. Would have liked Reggie, of course #1 would be NED, but believe me, the stable boy is pretty cool!
Love what you said about sleeping and using the energy to fight the disease, I'm off for another morning nap right now!!
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Carolben,
YAAAAAAAAAAAYYYYYYYYYYYYYYYY!!!!!!!!!! I am so happy to hear that your are hanging with the stable boy!!! Checked in today just because I wanted to see if you had posted an update. Enjoy your naps! I hope Reggie and Ned come to stay soon!
Laura
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I am only on 3rd cycle and am just exhausted. Is it REALLY the xeloda or is it depression or general inertia or just plain laziness???? I don't think I was this tired with the last week on it, and I am pretty sure I wasn't this tired last week off of it. My blood count is ok - not anemic - I just am so tired I don't feel like getting up, and when I AM up and about, am so out of breath with the least exertion. Does this usually get better during the week off? I am doing MUCH better with the nausea thing - have been taking the anti-nausea pills for PREVENTION as my MO told me - she is so smart!
Carolben, glad to hear your news! Vicki, are you doing any better with the nausea? Helen, thanks for the info. Ebru, M360, Rockinlife, and everyone else - hoping you are doing well.
Laura, thinking of you and wishing you the best - hoping new drugs are effective with minimal SEs.
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Loveforlife, I am so sorry of your progression, and I hope that Ixempra will work well for a very long time.
Linda-n3, I know that fatigue is a side effect of X, but I am a bit concerned about your getting out of breath.... When is your next scan? I know that we are all different, and my fatigue is not as bad as most women and some women sleep most of the day.
I thought that I would just let everyone know that I have been on X since November 2012 and my tumor markers are down to 33 and the side effects are not as severe as when I first started taking X. I have modified my regime to 11 days on and 7 days off.(My choice, alone because I am hesitant about the 7/7 regime and the 14/7 was too harsh) My dose was reduced after about the 3rd round and I am taking 2 tablets in the morning and 3 in the evening. Yes, fatigue is an issue as well as HFS, but I thank my lucky stars every day that X is still working. My next abdomen and head CT scan will be in 6 weeks. So for all the newbies and future X users, just a heads up with my journey with X.
Warm hugs
Mandy xxx
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Linda, I have the most crushing fatigue too, & also question myself about if it's inertia, laziness, depression or just plain fatigue because, hello, we're on chemo?! Maybe a combination of all those things? Funny, this fatigue started at the end of my week off? My bloods are all fine too.
I try not to be too hard on myself, if there was ever a time to listen to my body & allow it the rest it needs, it's now. I have been getting down for swims in the ocean, but yesterday I swam a bit out & suddenly lost all my breath! Panic, couldn't stand so just floated on my back and got back in. Took a while to get breathing normally again. I think part of my sob is just general unfitness and the fatigue.
Thanks Laura, good luck on Ixempra, hope it'll kick cancer butt!! Will catch you on the other threads.
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Hi everyone! My mom was supposed to start Faslodex today, but after looking at her blood work the onc decided that going to chemo was more likely to get things under control at this point so it's onto Xeloda with her first dose tomorrow. She will be getting 1500mg twice a day with 14 days on and 7 off. She was found to be anemic from the progression in her bones with her blood count down to 98 from 120 just in the last couple of months. (Don't understand the numbers entirely but it seemed to sway his decision to move to chemo.)
I'm going to read through past posts to see what we can learn and any tips to help make this easier would be great. She is pretty worried about the anemia and possible side effects from the new treatment. We got her a few different creams to start using on her hands and feet and--though I don't know if it was a tip for taking Xeloda or some other drug-- we also picked up some marshmallow cream/fluff to take the pills with.
((Hugs from cold and snowy Ontario, Canada))
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Canadagirl- sorry your mom is on this journey. I have been on Xeloda for over a year and have had fabulous results. I have my side effects but have learned to live with them. I would say that in the beginning it is important for your mom to take an anti nausea pill with the xeloda. I was told to take it for the first 2 weeks. I did and had no problem with that side effect. It was important to take it whether or not I felt sick. Stay ahead of the curve. Also make sure your mom eats something even if it very little with the /xeloda.
Hand/foot creams are helpful but I found what worked best was really trying to stay off my fee as much as possible. Sit down for a little bit during the day.
Having a mouth wash ready to help with mouth sores is also good. I haven't had problems with mouth sores but it was good to have it just in case. ( I think it was water, salt and hydrogen peroxide). Someone here can help me out with this one.
Fatigue is a big issue with this drug. I blame my fatigue on a lot of other things but realize that the Xeloda has something to do with it.
I also get acne from this drug and the first two cycles I got an itchy rash. It went away but it was not so pleasant. Benadryl cream helped with that.
She will most likely have digestive issues. For me it was diarrhea, other get constipated. having remedies for those issues on hand is also very helpful.
Mostly, know that the side effects from this drug vary from one person to another and cycle to cycle. Don't be afraid to ask questions to your oncologist and mention any problems you are having. Lots of us had adjusted our meds. I decreased my dose by one pill a day and that helped tremendously. Others have switched to a 7 on 7 off cycle. don't be afraid to ask about making changes.
good luck to your mom
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WHITE COTTON GLOVES - I will be starting Zeloda in 1.5 weeks. I have learned a lot from this chat room and want to be prepared. I did find white moisturizing hand gloves (Therma-flo weave) for $6.99 at Bedbathandbeyond in town. Had my 20% off coupon. They are 90% cotton and 10% lycra so I hope they will work. Otherwise, I will have to order a pair from Amazon.0
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Carolben and Linda -
I have also been soooo tired from the xeloda. I have been on it since October; started with 14/7 and have recently switched to 7/7 - so far my TMs are decreasing, so I hope the tread continues even though I'm now 7/7. Recently feeling very blue. It's just hard to do much of anything with out feeling like I've been hit by a very large truck. Sitting here in limbo...sigh.
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Yep I feel your fatigue pain. Today is day 12 of 14 for me and it took all I could muster just to get off the couch. If I didn't have 4 kids to get off to school and get to various activities I would have slept all day long. its a fight but one that has been worth it. I just keep telling myself that I only have 2 more days left and then I can begin the detox part of the cycle. I should be feeling better in a few days. Hang in there everyone.
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mompsych, maybe the 7/7 schedule will help with the fatigue! I'd be interested to know. I've also been feeling down & am sure fatigue has something to do with that. Been taking anti depressants for years & increased the dose in Oct. talked about it with my onc who said that the cancer & the meds can mess with our seratonin levels, causing depression. We talked about gentle exercise, talking about my feelings, allowing myself to cry. If that doesn't help there are meds to use.
Then he said if it gets worse to call him, he'll always make time, we can go have a coffee - well, that made me cry harder & just had to give him a big hug, he's such a sweetie. Actually, I hug him every time I see him!
Yes, Leftfootforward, 2 days to go - I'm only on day 7, but am already counting down! Start feeling better around day 4 off & don't get se's for the first 2 or 3 days on. And wow, 4 kids, you're amazing!!
I have a friend who makes meals for me to freeze, I had to get that in place or I'd live on bits & pieces, don't have the energy, interest or appetite to cook. Have been eatings lots of mangos, nectarines, grapes & litchis - our summer fruit is so good!
With the fatigue I found that if I am able to get myself to the beach for a swim and mostly to my weekly yoga class it feels good, doesn't change the fatigue, but it lifts my spirits usually. I don't swim far or long, just being in the sea & the sun makes me feel good. There have been 2 days that I slept for most of the day, but I get so bored & sick & tired of moping about at home all day. So I make sure I get out every day, if only to have coffee with a friend.
Welcome to the thread Suecolo2 & I hope X will be kind to you & effective! There's so much info & help from a bunch of amazing women here.
Canadagirl, hope your Mom will do well on X! I think Leftfootforward gave you lots of good info. Each cycle has been different for me - nausea one time, mouth sores on another cycle, fatigue set in from the 2nd cycle. HFS on legs, then rashes on chest & back. blisters & cracks on hands has been steady. but most of the se get better on my week off. As your Mom gets se post here, you'll always get feedback on what others have found works for them. X has not hit my blood counts so far. Please tell more about the marshmallow cream/fluff to take the pills with!! Never heard of that. I also got a pain in my chest in the beginning and used chewy pills (Maalox plus out here) for indigestion & gas, which really helped.
Off to have a coffee with a bc friend now.
Wishing all an easy se day
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WHAT IS YOUR DOSAGE?? I just received my Xeloda and see I am to take 4 pills twice a day. That would be 4000 mg a day! I do weigh around 190 lb. and read it is based on weight but read the normal dosage is 2500 mg. a day. I am sick even thinking of taking that much when I start in a week.0
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Has anyone had trouble getting insurance to pay for Xeloda?
I've been taking it since September and all of a sudden with the new year.... my insurance isn't going to cover. I have three days left of the pills and they chopped me off! Am trying to appeal........ their reason is that they won't cover Xeloda unless I have had previous IV chemo and then progression. I'm happy to say I have NOT had IV chemo. But how can an insurance company dictate my treatment? It's MY choice and it's working. They care more about their guidelines than a patient getting better!!! Please weigh in if you have had this experience. I'm trying not to panic, but how can I not. This drug is working for me!
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suecolo-
That sure seems like a big dose! Have you talked extensively to your Onc about it? What is your schedule? 14/7 or 7/7 (days on/off)? Sometimes it's a matter of hit or miss in terms of se's. my dosage keeps getting lower as my se's get worse. I am short and weigh around 115 and started with 3 pills in the a.m. and 2 in the pm. on a 14/7 schedule; I am now down to 2 in the am and 2 in the pm with. 7/7 schedule, and the last 2 days of the week I even take one less pill. If you read through this thread you will see that there is a wide and varying range of se's, even week to week in one person. Good luck with all this. I know it's initially overwhelming!
Rockinlife - you need to get your Onc to talk to the insurance co.(if you haven't already). You can also try to appeal the denial. Wish I had a solution for you!
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suecolo2- that is the dose that I started with. I am now down to 3 pills 2X a day because i had bad HF symptoms. I have been steady on this dose for over a year. Just keep an eye out on how you feel and don't be afraid to ask if you start feeling like you just can't do it. They usually have to tweak the dosage for people.
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