Just and advanced warning - there will be some whining here. No response required just putting it out there in case someone else needs this thread later.
I have been on full dose (3 tabs 2 times a day 2 weeks on 1 week off) Xeloda for a year. It really hasn't been that bad until the last few months. I can handle the HFS but the digestive issues have been increasing. All the bad stuff happens on the week off. It used to be the start of the week off was bad but by start of next dose, I was good to go. This past week (my week off) the day before I was to start my next dose, the vomiting/intestinal issues came on suddenly and relentlessly. This weekend the oncall doc prescribed Zofran and told me to not start my next round for a day. That worked, then I took my pills the next morning and the fun started again. So now I am off Xeloda for a week until scan results and labs from today are in and I see the next Monday. Headed to cancer center for an IV hydration drip this afternoon.
So much to consider and my poor husband is hanging onto hope that I can stay on this med for as long as possible because IV chemo is next and that makes it too real for him.
Some prayers are appreciated and thanks for "listening"
Allison
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Iwasborntodothis
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Whining? No you are NOT whining and we all need this info. Take care mty friend this is a VERY tough road that no on understands but those that have gone through this. Please keep me informed. I began a new chemo today We will see supposedly biggest symptom is nausea. Cant afford nausea because I need desperately need to up my food. So we will see. My port area had a clot so it took some time to clear but who cares, thy cleared it after a couple of hours.
Thanks for the internet "hug" my dear. I've lost five pounds since Friday...I've been trying to lose five pounds for ten years. My husband wanted me to keep taking the med so bad that he proposed me throwing up into a clear bag so we could fish the pills out if they didn't stay down. He is a scientist. Thank goodness we didn't have to do that and that I could discuss all the reasons why that was a bad idea. It just speaks to his stress level.
Okay that is funny and disgusting at same time. But I share is interest in looking at puke to se if I have pills in there! I understand that part I found dexilant to work wonders on my new found reflux which gets bad with fluid build up. The only reflux meds that worked. At least medicare reduced the copay to $136. Still ridiculous but it was close to $500 last year. Now I switched and cannot tell you what improvement I made! The world of difference between eating and throwing up. I am supposed to now go on zophran round the clock which constipates you! WE can't win.
last one which I only had twice, one round almost killed me literally. That was eribulin. I was in hospital for week with zero immune system. Now on Vinorelbine. First today, we will see.
Whining always permitted here, but it is called venting. Big difference. Here's to finding a solution to the stomach issues! Zero fun though the scale finally taps some number hard to reach otherwise!
Thank you, the IV helped plus taking another week off the med sounds like a vacation. Drinking an extra large orange, strawberry, and agave smoothie from Nektar right now and back at work.
I agree that is not whining it is venting. You are free to do so. Xeloda wasn't as kind to me. Just two pills gave me a terrible reaction but never mind, a stomach upset should be able to be cured. Hang in there.
I'm so sorry that you are experiencing these symptoms. They sound awful. I hope that if you continue with the Zofran it will kick in and help with these issues. Also I hope you get good scan and blood test results. This is not an easy fight for sure. Praying the IV hydration helps. Sending some hugs to you and your husband.
Thanks! I had sugar water, saline, zofran, and pepcid in my drip. The only thing that remained after that was the intestinal issue but a few immodium cleared that up. Good so far today. The IV nurse said that people try to fish their pills out of their vomit on a fairly frequent basis. She asked me to please not do that ever.
So happy the IV seemed to work for you with the vomiting. Also, I have used Immodium many times over the years to help with intestinal issues, which for me have usually been stress related, especially when waiting for scan results! I agree with the nurse to not fish pills out of the vomit. Anyway, hope the Xeloda will continue working for you and not cause any more unpleasant side effects. Sending hugs.
Prayers coming your way, my friend! I am on the same med and do for my PET scan to see if it’s working! I, too, am dreading having to go on the intravenous chemo. So prayers for both of us! Hope you are feeling better! God bless! Kathy❤️
You are one tough Lady. It’s ok to vent and hopefully someone on this medication can share some insight to help with your side effects. Zofran is good to have on hand, and I will say I did use ‘ ‘sea bands’and Benadryl to combat extreme nausea with iv txt years ago. Sending hugs and hoping you are more comfortable today.
I'm also on Xeloda, and have also noticed that the side effects (digestive + HFS) often get worse on my off week! I'm so surprised you haven't been on Zofran for a whole year! I had to start taking it my first week, the nausea was so bad. I lost 6 lbs my first cycle because I didn't feel like eating anything. Hang in there, and wishing you all the best for your scans.
Also beware with Zofran, it can cause pretty severe constipation - and I'm only taking 4mg. My onc's nurse prescribed 2 prunes a day Kefir and staying as hydrated as possible also helps.
Thank you - constipation seems like something very odd to me right now since my digestive tract has been like an open tap since Thursday evening last week. Thanks for the heads up because my hubby has been pushing the zofran.I also have had severe food aversion. I get hungry but everything I look at or smell is distastful. Then when I get something I think will be good, I can't taste it grrrrrrrr.
Yea, strangely the Xeloda also caused constipation for me - my onc and nurses are very confused :). I was hoping for the diarrhea to kick in, because zofran + Xeloda = normal hopefully??? Alas I guess it isn't meant to be. Make sure you do get some food down. Your onc might recommend a dosage reduction if it persists, which helped me get over some of the food aversion.
So sorry to hear you are having this experience. Sending you a big virtual hug and many prayers.
I’m praying that the IV hydration helps and that they find a solution so you can stay on Xeloda. I have been on it for six months and like you am praying that its working and I can stay on it for a long time.
Im sorry you’re going through this. I will be thinking of you. I feel like sometimes we have not choice but to be brave.. I’m brave through my tears .. ❤️❤️
Thank you for venting! I’m on my third week of Xeloda same strength as you and your post really help! I hope you feel better and sending prayers your way. Suzanne
Sister, and yesssss Warrior venting is one of the reasons we are here for each other. Iron sharpens iron.😀 May the GOD we serve give you restoration /healing through the right medication's with no adverse reactions Amen!😇
Hi, I understand your husbands concern re chemo by IV.
I was diagnosed stage 4 de novo in March 2019. I had doxetaxol then pertruzamab and tratuzamab. I'm now on Kadcyla, 20th dose at 3 weekly cycles. No disease found on scan for 18 months. I have the IV treatment at home. I have very few side effects. Stuffy nose and congestion in my ears.
Things have changed significantly in the last 20 years.
hi. what tremendous empathy you have...your comment about receiving saline while others rec'd IV chemo. touched my heart. so sorry to hear of your troubles and yes, vent away!sending hug....
Awww…you have our prayers and our best wishes! Whining is totally acceptable when you are hurting…and we hope this eases your discomfort and nausea. Do keep talking to your onc. 🥰
Hi Allison,I am also on Xeloda but a half dose of what you are taking. 3 pills a day. I am going to the doctor today to find out the results of the scan. I am shaking. I believe that we may have other options than I’ve chemo eg verzanio or Afinitor. Are you her2 negative? I already took ibrance as my first line of treatment. How are you doing and what is the treatment plan. I am very scared of Iv chemo. Hope some more effective drugs come out soon.
I am ER+ Her2- no BRACA, no PICA. I took Ibrance first then Faslodex before Xeloda. I will find out plan on Monday and do a post. Looks like Taxol once a week for 4 weeks followed by 3 weeks on one week off after. I'm wrapping my mind around it, It's just the next step and I am actually relieved to be off Xeloda after the week I've had. Deep breaths we are all here together
So I just complained to my hospital now and they're finally now getting someone to look at the Troveldy study option for me! I tried to look up the details of being able to have access to Toveldy for Er+ Her2 low (I know it's approved) without being on a trial, and it seems you might have to have had 2 chemo lines before getting access (I've exhausted the hormone-related drugs). Just like you have had. I've already had Taxol, or taxotere, twice, years ago, when first diagnosed Stage 1, and then on my first breast recurrance 3 yrs later. I really want to avoid it as much as possible. (I'd heard years ago, Carboplatin is a really tough chemo so no surpirse really that that was a disaster for you. Sorry you had to endure that!
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Kefir and staying as hydrated as possible also helps.
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Anybody with good results on Xeloda?
