I did my 3 weeks on xeloda and was so sick with stomach pain uncontrollable diarrhea nausea vomiting all while constantly taking two meds for nausea and med for diarrhea the thought of food makes me sick. I give up on this drug I’m on my week off and even sicker😢🤢
I feel like if I give up on it like I’m a looser not strong enough. I have been fighting this beast for almost 8 years I truly hope there is something else to be on where I can have better quality of life 🙏 Any words of encouragement would be great. Pray everyone is doing well.
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Barb5
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Dear Barb,Wisdom is something I lack, but sure hope they find something that is easier on your digestive system. What you have been through is horrible. Saying prayers that a treatment is found for you that works without making you sick. Best wishes and lots of hugs. Blessings Hannah.
Hi Barb I started Xeloda the same time as you...done 2 weeks on and now on the week off
I take 1850 mg twice a day
I did take anti nausea pills the first few days but found I didn’t need them so stopped...had a bit of diarrhoea but nothing to be worried about...however I do take massive doses of codeine and fentanyl for pain which I suspect causes constipation anyway so that will be stopping any diarrhoea
Ask for an adjustment in your dose...you can’t possibly put up with those side effects...my main complaint is breathlessness and fatigue so I asked for a blood transfusion which I had yesterday and feel a bit better...in fact I’m going to get on my horse tomorrow (3 months since I’ve ridden him)....well that’s the plan
It’s a shame to have to stop your new med because of side effects when lower doses apparently work just as well
I am glad you have tolerated the first couple of weeks on Xeloda and can now have a break from it ... and hopefully get to see / ride Monty tomorrow ! Have a good day ! Much love x
Didn’t ride...felt too disentoriated due to the vision problem...therefore not safe...so upset...doubt I’ll ever ride again...cried all the way homeBarb xx
I was really upset but I think I was overwhelmed because the yard was busy and there were people there who I’d not seen for a while and I thought I had to ‘prove’ something......I’ll go up during the week and maybe plod out with the owner just for 30 mins or so....physically I’m capable as I do walk and do exercises at home...it’s the balance/vision thing that concerns me and I think I’m making a big deal over it because it’s something I’m not in control of...Bugsy’s not a stupid horse now he’s older but like all flight animals he has his moments and can be a bit spooky!!I’ve been driving my car ok since the ophthalmologist said I could but there’s no moving around in the car yet trotting is the thing I’m concerned over...need to get my big girl pants on and just get on board...once I conquer that fear I’ll be fine...if not then at least I’ll know and give up the idea...so hard though as it was my favourite pastime all my life and therapy since my diagnosis
It’s totally fine to just walk. If you’re up to trotting a few yards, then go for it otherwise don’t worry about it. Or walk the first time then try a trot the next time after you know what getting back on will feel like.
I imagine just getting on and riding out for a half hour will do you good. You’re not trying to qualify for the Olympics so what ever you can do is fine. 😀 (that’s what I tell myself anyway)
Is someone keeping him legged up in the meantime? So he is in work and won’t be a goose after not being ridden?
Hi thereYes my daughter rides him and the other one (Monty)... not a lot now it’s dark when she finishes work...she’s a very calm sensible rider and doesn’t get him excited...he’s not ‘fit’ like when I competed but ok for steady hacking
I’ll wear my air vest and just take him somewhere familiar
Sounds perfect. It’s great your daughter can ride them in the meantime. Good luck I hope you have a wonderful ride. I do empathize with the loss of control factor. In horses..in life with MBC... hang in there! Xo
Hi Barb. Ask for an adjustment in your dosage. And maybe make it 1 week on and 1 week off. Xeloda is a very good medication and it will be a pity if you have to give it up.
Dear Barb,I am at the end of my second week on Xeloda. The first week I was like you with nausea and diarrhea even with meds. I could not get up from my chair. Just this past Monday the doctor told me to go from 4000mg per day to 2000mg. It has taken a few days but today I am like my old self and have been for the last two days.
The doctor assured me that the 2000mg per day would be just as effective.
I could not have tolerated the 4000mg another day so it is good that he told me to change.
Thank You thank God for this site the verdict seems to be don’t quit try lower dose I will try it because this is supposed to be a good med that can last for years 🥰
Why oh why are we prescribed these ridiculously high doses when a lower dose is as effective...same with Ibrance and Afinitor I was started on both of these on the highest dose and had to have them reduced due to side effects....before I started Xeloda I told my oncologist I didn’t want to start on the high dose and she listened!!!..otherwise I know I would have had weeks of feeling ill ...mbc is bad enough as it is
Dear Barb - Sorry to hear of your severe side effects. I experienced similar a couple of years ago when starting Verzenio. I would contact your onc ASAP as a lower dosage may help tremendously. Small amounts of food 20 minutes before the dose may help, along with a lot of water. I take Xeloda now 500 mg a.m. and 1000 mg. pm with very few side effects. Scans late December will determine whether I continue, or move on to another treatment. Take good care of you and follow your instincts. Some of the dosages prescribed are directed to a large population. Each of us has different thresholds for many of these meds. Wishing you good direction from your doctor, and quick improvement from these awful symptoms. - 626262
Sorry to hear about yoroblems. I can only say the same as the everyone here. Ask for a lower dose if possible or another medication. I was supposed to start Xeloda but am trying a different dosage of Ibrance against my oncologist's recommendation. However she would have started me out on 1000 mgs. twice a day because my immune system is so sensitive.Wishing you the best,
Like everyone else is saying ask for a reduction in dosage. You can't continue like this. I hope the reduction takes care of the side effects and you get a long run on this treatment!!
Oh you poor thing - just horrible for you. But seems like a lot of good advice above - hope they can adjust your dose and you can feel better. Sending you all best x
My heart goes out to you. Are you on the highest dose.? It doesn't seem right to keep you on this drug or at least that dose.. You are not a looser. My oncologist thinks if we wait , I won't be able to handle it either. They make you feel so weak and yet in spirit and resolve , we are the warriors! Good luck and I am praying for all of us all the time.
I pray thet they can find something effective for or side effects or a different treatment. So sorry you have been so sick.You are certainly not a loser. You have fought for 8 years! You are a strong amazing woman!
Hey, Barb! I am a newbie here, so I don't have much insight to share about treatment yet. (I started on chemo even though I am de novo, and am just finishing up my second month on Ibrance/Letrozole.) But I did want to say that I "see" you... and everyone else on this forum. I don't chime in much, but I am very much here with you ladies every day. Sending you lots of support and good vibes from my end. Hope a lower dosage does the trick for you!
Welcome to the sight Mary ! I see you joined in September is that when you where diagnosed? If you don't mind could you tell us what type c you have . I am ER+ Hers-. I to read a lot more then I respond. I feel I'm not as fluent in my words as so many others on here. I'm always afraid someone will miss interpret what I'm trying to say. I do try to respond some as I feel if everyone just reads the sight wouldn't be as effective as it is. The info I gather from here is so helpful when I go into my oncology appointments. I know exactly what questions I want to ask. I'm glad you found this sight as I feel it will be a great benefit to you.
Hi there! My diagnostics seemed to take a while due to COVID, but I found out that I have breast cancer at the end of May. They were telling me initially that they expected it to be minimally stage II but probably stage III. Chemo was slotted to begin on July 10th, even though I hadn't finished with staging. PET scan report came back on July 7th that suggested bone metastasis --- in the sacrum and iliac bones. (I found out by reading this myself, rather than from my THEN oncologist... who I have since left.) Umm. Bone biopsy and scan the following week confirmed stage IV. As my medical team has told me very little, I am learning what I can on my own. Requested a copy of my full medical record about two months ago, and that is where I learned the nitty gritty. I am HR+ (estrogen 99% and progesterone % 62), HER2-, and grade 2. My breasts have characteristics of both lobular and ductal carcinoma.
Truthfully, when I first found out about my diagnosis, I had it in my head that I didn't have more than 2 years to live. Not sure if it was what was being said to me... or what I was HEARING. But I attended the NYC Metastatic Breast Cancer conference online; a resource I found through this site... and it made all the difference. This site, too, because it was the first time I was hearing of women doing pretty well... and living beyond that magical 5 years that everything else on line seemed to suggest (to me) was the best I could hope for.
I am about to start my third month on Ibrance and Letrozole today. I am getting off easy on side effects, especially after they switched me from the capsule form the first month to the tablet. I actually feel great. Stressed about possible progression I feel in my breast, and won't have my next scans until sometime in January. But this site, and everyone on it, has given me a whole new outlook on what this may mean for me. For instance, I know I read that some people don't immediately see results from the Ibrance/Letrozole. For that, I am not letting myself get upset with what I think I am feeling in my breast just 2 months in to hormonal treatment.
As I learn and personally experience more, I will feel that I have more words of wisdom and suggestions for folks on this site. For now, just know I READ everything. And I am here, even when you don't know it!
Hi Barb. Sorry you have had such horrid side effects. Sorry I don’t have any advice to offer except that quality of life is important and you don’t want to struggle with strong side effects like that. Hope you feel better soon.Clare x
I just finished my third round of Xeloda, 3000mg a day one week on, one week off...and I think it’s doing a good job for me, though I have had a couple of rounds of bad diarrhea...now I just take an Immodium every morning and that seems to take care of it! All I want to say is that it seems to be such a flexible medicine...the doctors seem comfortable playing with both the dosage AND the timing....so you could ask your onc to take both into consideration when she revises your protocol! Good luck! I bet you can find a way to make this work for you! Signed, Another Barbara!
So sorry for everything you are going through. My mum are on them too she is on her 4th cycle and it has been hard to start with but things seem to have settled a bit thankfully now except for some pain in one leg. Hope you feel better soon.
I had the same issue 5 years ago. Thank goodness Ibrance had just been released for use. I switched to that and have been stable since. Praying you find the right treatment that works for you without the horrible side effects.
Sister warrior, and yessssssss over-comer . I do pray our FATHER/GOD will give you comfort, peace, and complete healing. Put on the full armor of GOD. What hasn't broken you, will only make you stronger. I see you are getting stronger than steel
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. I do pray our FATHER/GOD will give you comfort, peace, and complete healing. Put on the full armor of GOD. What hasn't broken you, will only make you stronger. I see you are getting stronger than steel 
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