Well Ibrance and Fasoldex didn't work for me. I had progression of my lung mets.
I am starting on Xeloda with much trepidation. So worried about the side effects and also progressing farther down the line of treatments. I don't know what is next or how many more options I will have after this. I do hope it works with mimmal side effects. Wouldn't that be nice!
I would like to hear from anyone who has been on it for one or two years. I know someone wrote they have had good success I think, for more then 2 years.
Cheers, June S.
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Dear Sandra: Thanks for your very wonderfully kind and helpful letter. Yes I did take a chance knowing most likely it would not work. I didn't get to try 5/2 days I really wanted as my oncologist wouldn't hear of it so she reluctantly agreed to one week on/one off. I really thought there was a lot of merit in the trial of 5/2. Often an adjustment makes a difference. I know also, my fear of Xeloda was likely affecting my judgement.
Nothing ventured nothing gained was my thinking. I have for the last ten years had a fairly easy ride with Cancer. (even though I wasn't diagnosed until 2013.) Not much discomfort. For that I am thankful.
Yes, maintaining some quality of life is important. I hope my journey on Xeloda will be not to polemic. My oncologist had suggested first starting me on 1000mgs. given that I had to go to 75mgs. on Ibrance. I did tolerate Ibrance very well except it played havoc with my immune system. Too bad.
Now she is saying start at 1500 twice a day. I guess because of the increases in the lungs. I don't expect to do well at that level but we shall see.
I had a nice call from the drug company today to explain Xeloda and give me advice on how to cope with any side effects and a phone number to call. That was a comfort.
I am trying not to let my brain run away with the worst case scenario. Trying to stay positive.
The phone call and your letter helped me tremendously.
I just want to add that I think the extra pain from the last Faslodex injection has been quite debilitating since Dec. 22nd. So that weighs my judgement. I feel like my coping skills are in the ditch right now. That plus my husbands deteriorating mental and physical health make life pretty difficult. We are both struggling at the moment. I keep hoping for some relief.
I am sorry you're contending with a treatment change and wanted to share some studies about the efficacy of lower-dose Xeloda below.
It sounds as though we're in a similar home situation, as my husband has neurological and cognitive issues. We have no children or family. A few years ago I moved us to an Independent Living facility that is absolutely wonderful. They provide meals, social events (prior to the pandemic) and above all - a safety net because the staff and residents are wonderful. If you'd like to chat, feel free to send me a PM.
An analysis of dose modification and outcomes from four Phase II capecitabine monotherapy trials, one Phase III capecitabine/docetaxel combination trial, and an analysis of consecutive MBC patients who received capecitabine outside of a clinical trial concluded that reduced capecitabine doses were associated with a lower incidence of treatment-related adverse events, specifically hand-foot syndrome, diarrhea, and stomatitis. Furthermore, time to disease progression and overall survival were similar, or even slightly longer, among patients who received lower vs. full-dose capecitabine in all of the studies reviewed. Together, these data support the practice of dose-reducing capecitabine, including the possibility of starting at a lower dose (<1250 mg/m 2 twice daily), to reduce the incidence of adverse events without compromising efficacy. clinical-breast-cancer.com/...
At the University of Southern California (USC) hospitals, capecitabine is routinely prescribed at dosages as low as 600 mg/m2 twice daily, with a majority of MBC patients receiving a flat dosage (not adjusted for BSA) of 1000 mg twice daily. In a review of 84 patients who received a median capecitabine dosage of 565 mg/m2 twice daily, the median PFS among the 62 patients with measurable disease was 4.1 months), which was similar to the median PFS values (4.4 months; 4.2 months) for single agent capecitabine reported in the two major trials with similar eligibility criteria. Furthermore, only 2 patients (2.4%) discontinued capecitabine due to toxicity, supporting our hypothesis that starting treatment at low dosages minimizes side effects while preserving efficacy. gotoper.com/publications/aj...
Thanks so much for that helpful information and your support. I will try a PM maybe tomorrow. My oncologist who is very unreliable and very new to oncology had originally said she would start me at 1000mgs. twice daily and then decided that I should start at 1500mgs. twice daily. I am not happy about that and questioned it but she thought that because I am a bit on the heavy side, I should have the heavier dose. I don't agree. I have never heard of adjusting this type of medicine based on that. i might be wrong. Maybe she was using that as an excuse to try the heavier dose. It was good to read the article but I am sure she won't respect it if it isn't from the National Health. I am in Canada but that shouldn't matter. I am going to ask the pharmacy.
You are on target - Xeloda dosage is not BMI-related. Perhaps taking the studies to your Medical Oncologist (even if the studies were done in the uS) may be of help. And a second professional opinion is always prudent!
June I just want to wish you luck with Xeloda. I’ve been on it for 3 and a half months and so far no serious side effects. I also wish it would work for me for many years after Ibrance and Faslodex failed after 2 years. Will say prayers for you and your husband. Maria
Thanks again Sandra. Yes, there is support from my family and friends. And I have discovered from the company distributing Xeldoa. They phoned today to go over all the details and suggestions for coping with side effects and I have number to call for help if I need it. I feel somewhat better now. That is getting me through so far. It really is the worst time of lives. However, we have had a wonderful life together. Had so many great experiences then a lot of people get to have. Travelled a lot. Especially to my husband's homeland Germany. Such a lovely country to visit. Also here at home we have had so many great experiences. My husband is an extremely creative person. Above and beyond.
And the support and information on this forum means so much to me.
Well I’ve only been on it for a week now. So far side effects are minimal. Mild sores in the mouth taken care of with a compounded mouthwash. A little mental tiredness or fogginess after I take it but very mild. Will check in in a couple weeks.Sending hugs
Oh Thanks. That would be great to know how you are doing. Ibrance put my immune system in the ditch even at 75 mgs. and lung nodules kept growing after 9 months. Hope Xeloda gives me some time. My other problem is four fractures in my pelvic area. Minor bones and they do not cause me any pain and are trying to heal very slowly. I have a bone scan on the 28th. Hoping for good reports.
Thanks Madlyn. I will take all the best wishes I can get. Yes we are fortunate to have Sandra on this forum. She understands so much of what we are going through.
I will just add here that I didn't mention in my reply to Sandra that we have 3 great children. A son and two daugthers. Our son lives nearby and the girls are one and half hours away. They are so very good to us.
I’m on my 3rd cycle of xeloda and seem to be ok with side effects.
My main side effect is tiredness but that seems to be easing a little. I moisturise my feet and hands regularly with a cream containing urea to try and keep any problems at bay.
I’m overweight and my dose has been capped at 4000mg daily (2000mg twice a day). I also have a 6 weekly denosumab injection and take AD cal with VitD.
My bloods have been ok since starting but my current Oncologist does not measure CA15-3 markers so I don’t have any indication if it’s working yet🤞
I’m waiting for a scan date and then I should know more.
I’m currently trying to believe that Xeloda is working and I’m not in any pain and I’m feel well.
I’m just fed up with lockdown..... I so want to do so many things whilst I still feel well enough.
June, I wish you all the very best, keep us posted on how you get on.
Let’s hope all of us on Xeloda get really good results, minimal side effects and longevity on this treatment.
Jo thanks for your great reply. Gives me new hope to hear how you are doing. Yes we all have things we want to do and everything is on hold because of the virus. Double whammy for us. Good wishes right back at you!
I have only been on it for 3 months, but really like it so far....minimal side effects, and it seems to be working! My favorite med, after Ibrance. Good luck!
Are you on full dose and don't need to take pills for nausea and other problems? I know we are all different but not sure how many have very few side effects.
I am on 3000 mg a day, one week on, one week off. I take an Immodium every morning because I’ve had trouble with diarrhea....the single Immodium takes care of it! I typically have about 40 minutes of discomfort...not really nausea, but some unpleasantness...every morning between 10:30 and noon (I take the pills at 10 Am and 10 pm)but I never throw up and it usually passes in that time....if I’m home I lie down, but yesterday I was in church (masked and safely distanced!) and just put up with it...and it passed. I usually walk or hike with my dog in the afternoon and don’t even think about it, then in the evening I just feel a little tiny bit off but not enough to do anything about it! So I feel pretty lucky....I just pray that it’s working! I see the doctor on Wednesday and will learn about my tumor markers....my recent scan showed that it had reduced most tumors (liver and lymph nodes) by 20 to 30%, and kept my bone Mets stable.I hope this isn’t too much detail! Good luck!
Just wanted to say, that is not to much information at all. It was great. The more info the better! I liked your suggestions of taking the Immodium before the onset. Makes sense. I will see if that starts for me. I am 3000 a day as well so you have encouraged me to stick it through based on your results. That is what we are looking for.
Thanks so much. That is good encouragement. Just what I need to hear. I did have a persistent problem on ibrance of a lowered immune system so I am concerned I may not be able to tolerate Xeloda.
I had a lot of success on Xeloda. It put me in remission for almost 2 years. Only side effects were the hand/feet skin issue. I kept a dish of olive oil on my vanity in my bathroom which I used each time I washed my hands. Also had a good deal of moisturizes on hand. And I did buy a foot bath, which I used with epsom salts and a good pumice stone to keep my feet happy. It worked well enough. Wishing you the same success!
Thanks for all the encouragement! Just what I need right now for sure. I have had myself in a hole about taking this medication. Now with all the support, I can approach it a little easier. May I ask what dose you are on and did you not have the bowel problems or nausea/vomiting problems?
Hi I have been on Xeloda for 9 months, side effects have been quite minimal and have not stopped me doing everything I have always done. As others have said u need to use lots of moisturisers on ur hands snd feet as u can get hacks which can be hard to heal, but I have been able to keep on top or it and haven’t had much trouble. Like you I am hoping I will get a long period of time on this drug, best of luck x
Oh good to know. Thank you for sharing that. I need to hear about successes. What dosage are you on? I am starting at 3000 mgs. I am not to happy about that but going along with my oncologist this time. Not that she has earned my confidence but I can't disagree with her to often. Not fair. Do you have any problems with your immune system on Cancer drugs? That is one of the issues I have had.
I’ve been on Xeloda for 10 months. Started with two weeks on and one week off. I became dehydrated and hospitalized for 6 days.
They cut my dose an I’ve been on 1000 Am and pm then a week off. My oncologist gave me a 2 week break. My ca2729 cancer number went down to 110. I am on my second week off right now and want to see if I can go three weeks off. My brain fog lifted.
Sorry to hear you had such a struggle but hopefully you will be alright now on the lower dose. My problem is I lean to a dryer skin and I don't drink a lot of water during the day. I do try to increase it but it is difficult because I just don't feel thirsty. It has never been a real problem for me but now it might be.
It’s hard for me to drink water too I drink coconut water from Costco. I get the not from concentrate organic. They come in boxes of 9 for about $15.00. Coconut water has potassium and other good stuff. I also have a glass of V8 with a teaspoon of flax seed ground and vital reds ( from Amazon). I also drink orange juice and eat a tangerine daily. Blueberries and blackberries are another great combination.
My cancer numbers went down to 110 last check up. I get tested every two weeks.
Thanks Reenie: I am trying to drink more water and I do the orange juice and tangerines also. I used to buy fresh fruit already cut up even though it costs more but they are mixing a lot of watermelon in with it now and I feel like I don't want to pay for that and I am not that fond of it anyhow. I could buy the blueberries boxed separately. Blackberries, I don't like a whole lot. I must look and see. Everything we can do for nutrition is good.
Cheers, June S.
Hi 8576. I am in the same boat after Faslodex (and after Ibrance/Letrozole) failed, and starting Xeloda, probably tomorrrow. I am scared about the side effects as you are, but reading some of the comments below gave me positive hope. Thank you all for posting your recommendations for certain side effects as well, as I am going to order some of those right now.
Love to you 8576....may we all experience longevity on Xeloda!!
Hi Anja; Thanks to you as well, for all your kind remarks and it is good to have some company through this experience albeit, it goes without saying, I wish we both weren't here.
Did I mention the Camomile tea. I have used it for minor stomach upsets before and now I hope it will help in this situation. It will not replace the tablets sent with the Xeloda for stomach upset but might give some relief. I use a German brand. Messimer.
Just back from my doctor’s appointment....my tumor markers are down a little for the first time in months, and she says my lungs sound clear....I don’t have to go back for a month! Three cheers for Xeloda! She even said I could try running again!
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