All about Xeloda

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  • Dianarose
    Dianarose Member Posts: 1,951
    edited November 2017

    imagepainted this the other day. Keeps my mind occupied.

  • goldie0827
    goldie0827 Member Posts: 6,835
    edited November 2017

    DLB, so 2 pills morning and 2 at night? I found that rather tolerable, but felt like I should do more if I could withstand it. Before I went to 1 pill 3xs a day, I was on either 5 or 6 pills a day, don't remember which tho.

    Karina, 8 pills a day? I don't know how you manage. When I did 7, I did it for the two weeks and I was DONE, not going to that. The cramping and explosive diarrhea was way more than what I could deal with. Wasn't going to live like that. I also got a terrible rash on almost my whole body. Itchy and sensitive….no thank you!

    I work from home, so I try my best to just stay off my feet. My hands look like that of a 100 year old!

    JVF, I have not had problems with low blood counts. Ibrance will be my next treatment when X quits working. I'm not looking forward to it, as it seems to fail many and then the low counts and needing transfusions. UGH!

    For the new gals, praying you get a long run with the "Madame"!

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited November 2017

    Hi All,

    I thought I would weigh in on the discussion of dosage of Xeloda as I thought it might be helpful. We can't think in terms of number of pills or milligrams of drugs as the these are adjusted to the appropriate surface area of your body (a calculation based on your height and weight). I'm currently on the standard dosage which is 1250 mg/m2 twice a day for 14 days. As a comparison, I currently weigh 125 pounds and am 5'5" tall. This equates to a dose for me of 1650 mg, twice per day for 14 days (surface area of 1.26-1.37 square meters). The pills come in either 500 mg or 150 mg so dosages are rounded to the nearest 150 mg. In my case I get 4 pills (500 mg x 3 and 150 mg x 1) with breakfast and another 4 pills at dinner.

    The protocol calls for dose reduction if HFS becomes an issue - generally to 75% of full dose and if it is still a problem then it can go down to 50%. It sounds like some of your oncologists are recommending reductions for those of you who have been stable on the drug for some time.

    I hope you find this helpful and hopefully it's not annoying. I have a background in science so my inner geek comes out when I am looking at the various treatments. I like to know the protocols inside and out so that I understand why my MO is making certain decisions.

    Pat

  • JFV
    JFV Member Posts: 341
    edited November 2017

    Sandieservant Glad to hear Madam x has been good to you blood counts. I got two units of RBC yesterdAy. Not dizzy today which is nice. But, I must still be below normal. I crashed with fatigue about 2pm.. Thanks for the science explanation. When I'm not feeling sad about having cancer I find the science fascinating.

    Goldie, I have a friend who has been stAge 4 for 7 years. She just switched to ibrance the same time I did and is doing great. So, I'm hoping that's your future.

    Joan

  • minxie
    minxie Member Posts: 239
    edited November 2017

    This 4th cycle of Xeloda has been kicking my butt, quite literally. I took my last dose Wednesday and have diarrhea ever since. I'm supposed to start up again tomorrow but don't know if I can take it. Has anyone ever had diarrhea for a full week on their week off? I'm seeing my doctor tomorrow and will be bringing this up of course.

  • goldie0827
    goldie0827 Member Posts: 6,835
    edited November 2017

    Thanks JFV, I'm hopeful that when I have to move to Ibrance, that I get a long run out of it. It's just so scary, this disease. Altho I feel wonderful, I also feel like I'm sitting around waiting to die. Just waiting for that ball to drop. I try my best to not think about and enjoy my life.

    Minxie, I did have "D" in the beginning and it was explosive. Couldn't be too far from the bathroom and had several accidents. As of today, they are rather normal and solid. I do Hemp Oil and Cannabis Oil, so not sure if that's it or not. Hoping you find some relief and hopefully you can do it naturally as opposed to more drugs! Some good ideas on the following link.

    https://www.life-saving-naturalcures-and-naturalremedies.com/home-remedies-for-diarrhea.html

  • NO1-2NV
    NO1-2NV Member Posts: 90
    edited November 2017

    goldie, your statement about sitting around hit me hard. I too feel the exact same way! I think the madame is making us feel this way. Tired actually exhausted, painful hands and feet not working as designed, and now the "d".

    I started my second round of Madame X yesterday. Last night the "D" started. I was so sad about that because I did not have it the first round. I am thinking I may need to start a BRAT diet...bananas, rice, apple sauce, and toast/tea, to see if this helps get this under control. I am also thinking I will start taking a probiotic midday. Thinking that this "d" is messing with my gut bacteria.

    Now, if I could just get enough energy up to run to the supper market and then head to the cancer center for an injection.

  • husband11
    husband11 Member Posts: 1,287
    edited November 2017

    On the subject of dosage, University of Southern California Hospitals prescribe xeloda at a flat rate dosage of 1000mg twice daily. No adjustment for height and body weight. They believe they get as good of results as anyone. Can't say for sure, as that would require a large scale clinical trial, but based on a small study they did, it appears to be correct.

    http://www.gotoper.com/publications/ajho/2015/2015...


    Since the approval of capecitabine, moderate dosage reductions have been studied, either retrospectively7,8 or in small prospective trials9-11 in order to assess both the efficacy and frequency of adverse effects (AEs) associated with lower dosages. Other studies have examined the efficacy of dosages of capecitabine as low as 825 mg/m2twice daily,12 suggesting that this dosage is no less efficacious than the full dosage. Altering the treatment schedule has also been investigated as a method of reducing drug-associated toxicity. The administration of capecitabine via "continuous" dosing (without a 7-day rest period) using dosages as low as 650 mg/m2 twice daily was recently shown to be superior in both tolerability and efficacy to classical cyclophospha-mide, methotrexate, and fluorouracil as first-line chemotherapy for MBC.13 Another series of studies demonstrated tolerability of a 7-days-on, 7-days-off "dose-dense" regimen of capecitabine,14 as well as efficacy of this alternate schedule in combination with lapatinib15 or bevacizumab16 that was comparable to results of prior trials using the traditional 14-days-on, 7-days-off schedule.

    The question of dosing is further complicated by the fact that fluoropyrimidine pharmacokinetics vary significantly between patients17 and demographic groups,18 such that precise dosing based on body surface area (BSA) may be unnecessary. The concept that variations in thymidine phosphorylase polymorphisms may explain differences in patients' responses to the drug in both tumor and extratumoral tissues was proposed by Kaufmann et al9 as a rationale for the observed correlation between the development of hand-foot syndrome with time to progression (TTP) on capecitabine therapy.


  • Dianarose
    Dianarose Member Posts: 1,951
    edited November 2017

    I take the nausea pills 3 times a day and it seems to off set the diarrhea part. I did have it the end of my cycle and a few days into my week off but was also on an antibiotic. I must say Xeloda has been the easiest chemo I’ve done so far and she’s my ninth one. I wear loose shoes and never go barefoot and use Eucerin cream daily and so far so good. Will start my fourth cycle on Monday

  • minxie
    minxie Member Posts: 239
    edited November 2017

    Just got back from the doctors. Good news, my lymph node mass is shrinking after 4 cycles of Xeloda! I guess all my suffering has been worth it. From one view of my CT scan, it went from 3.9 x 3.1 down to 3.3 x 2.1. the other view, down from 5.7 x 2.5 to 4.1 x 1.5. No new tumors appearing. So we're moving in the right direction! He told me to hold off on resuming Xeloda until this diarrhea has resolved. Then we're switching to a 7 day on 7 days off dosing schedule, which will hopefully be easier on my poor digestive tract.

    Goldie, thanks for the recommendations. Wish I could get cannabis oil, but I live in Georgia which is very backwards about such things.

  • pajim
    pajim Member Posts: 930
    edited November 2017

    Minxie, that's excellent news! Hoping the new regimen will help with the SEs. . .

  • Scwilly
    Scwilly Member Posts: 232
    edited November 2017

    Congrats Minxie - so happy to hear of your great scans and shrinking mass. I had a similar result last week and its so encouraging.

    Sorry to hear of your D side effect. My stomach seems to have settled down after 4 rounds, and definitely since I've reduced doses from the first round. I get nausea and take Zofran now and again which really helps, and this has counteracted the D. However too much certain makes me constipated, which I deal with with laxatives now and again. Its such a a balancing act.

    Congrats again!

    Sarah

    Hug

  • marylark
    marylark Member Posts: 159
    edited November 2017

    Sarah,

    I just saw your good news regarding scans. Yay!

    Mary

  • Jeenee
    Jeenee Member Posts: 91
    edited November 2017

    Nice to read about so much good response to Xeloda here. I was on it 12 months and I had a very good run - 12 months. Well tolerated. Some HFS but manageable. It took me seamlessly into my next treatment with just a hint of progression in liver mets. We quickly switched into a clinical trial and I got another 2.5 years PFS. So Xeloda provided a great year with quality living!

  • Scwilly
    Scwilly Member Posts: 232
    edited November 2017

    Thanks Jeenee for the encouragement to us ladies on Mdme X. A year would be fab - more a bonus. When I last progressed in the summer it hit me hard. We are now in the midst of a pool remodel and I was feeling I wouldn't make it to the end of Feb to enjoy it. I feel safer now I've had a good scan.

    MaryLark - wishing you the same for your scans in January. I'm wishing everyone great results and indicators.

    My tumour markers never seem to show anything, and my onc reviews my liver marks regularly. Most have come back down quite a bit. Funny thing is my bilirubin went from normal to 1.5 to 2.1. Hoping (but realistic too) that when I take my test next Friday, when I'm off X, then it will be back down and not risen.

    Also - I definitely think my side pain is worse when I'm on X compared to my week off. (Its been an on and off thinkg since I was dx with mets in Nov'16) When I started this round, I definitely had more pain, even from the first day or two. Whatever it is - I'm getting comfort thinking its those dumb cancer cells having a last Hurrah and then dying! I know that "what will be will be" but it helps to think of them getting a bashing!

    Sarah


  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited November 2017

    Oh my gosh, I am so glad to be on my week off. Around day 10 of 14 I start feeling really tired, and I keep watching my hands, wondering if this cycle they will make it through well enough for me to continue to pretend to the world that I am not on chemo.

    Sadiesservant, thank you for the info. We heart science geeks. Husband, thanks for your info, too. I'll be lazy and ask if you can briefly elaborate on your last paragraph about hfs-ttp correlation? (Or I'll go read up on it later.)

    Goldie, I'm on 2500. That is a little less than body surface calculation would say. I trust my onc's experience. I think she hit the right dose to start. Any higher and I think side effects would have been too much. With side effects being cumulative, she thinks I will eventually need a dose reduction. My opinion is that if the drug were to prevent me from exercising, that couldn't be good. The markers can't go much lower than low normal! Yes, I think first week on is the best week.

    NO-1, I think the BRAT diet has helped me avoid taking anti-diarrhea drugs. When I get a hint of D, I go to BRAT for a day. This happens maybe once per cycle; it happened maybe twice per cycle when X was new to me. I also eat yogurt for probiotics.

    Deanna, I understand your question about lowering the dose and it is a good one.I can't seem to think clearly about it when I am tired. I hope someone's onc will answer it.

    Dianarose, I love your Santa Claus painting. It is really charming, with a sweet old-fashioned look and nice texture. You could have an office store scan it and print it on card stock to make your own Christmas cards.

    Congratulations on the good reports, Minxie and Scwilly! Sarah, I had a huge liver ache when I started X, because it was working. Bash those cancer cells.

  • Dianarose
    Dianarose Member Posts: 1,951
    edited November 2017

    congratulations to those with good news on your scans!!!

    Been a crazy Week at our house. DH got his biopsy results and cancer was found in two of the twelve samples. We won’t know what the plan is until we get back from our cruise 🚢. Neither one of us are familiar with prostate cancer so we will have our questions ready.

    Dam, I hate cancer!!!!!

  • pajim
    pajim Member Posts: 930
    edited November 2017

    Dianarose, my husband had prostate cancer so we've been through this. Feel free to PM me if I can help.

  • Lindalou
    Lindalou Member Posts: 598
    edited November 2017

    Dianarose, My DH was diagnosed stage 3B prostate cancer as well. You may PM me too.

  • missmonty
    missmonty Member Posts: 71
    edited November 2017

    Hi Everyone,

    I just had my first scan after starting Xeloda in August. The results were mixed. Regression with my primary breast tumour (still "battling" with my MO to have it removed), regression with lymph nodes, and 2 of the lung nodules. (I have many, very small nodules) There was slight progression with a few other lung nodules, (max 3mm in growth) but no new metastases. I have had minimal side effects after 4 cycles of X, and am overall tolerating it very well. (knock on "cyber" wood..:))

    My MO would like me to continue Xeloda for another three cycles to see if we can achieve better response and get all the lung nodules stable. I am wondering if anyone else has had mixed results, stayed the course, and had continued success with Xeloda?

    Any feedback would be great.

    Anna

  • Dianarose
    Dianarose Member Posts: 1,951
    edited November 2017

    Cancer center just called and my tumor marker is 66. A true miracle!!! A year ago they gave me two days!!! Thank you God and all of you who pray!!! We are kicking some cancer butt with madam X.

  • Karina
    Karina Member Posts: 76
    edited November 2017

    Dianarose and Missmonty, that's fantastic news. So happy and inspired that X is working !!!

  • pajim
    pajim Member Posts: 930
    edited November 2017

    MissMonty, I had the experience you are describing when I was on Femara and Faslodex. Each scan some bone spots would disappear, a couple would appear. Then the next scan those would disappear and maybe something else would appear.

    This went on for at least a year until scans started to show that lesions weren't disappearing but getting brighter plus there were new ones. Then it was time for a change in treatment.

    So yes, you should stick with it. So long as any symptoms are getting better stay the course.

    What's happening here is that not all cancer cells or lesions are the same. So the ones who are susceptible to Xeloda are dying. But there are always some that are not susceptible. This happens with all drugs. Sucks, don't it.

  • missmonty
    missmonty Member Posts: 71
    edited November 2017

    Pajim, thanks for feedback.  I'm comfortable with the decision to stay on Xeloda and hope for the best.  One more quick question, if you don't mind.  Are you taking any supplements along with Xeloda?  I'm getting such mixed information on that.

    It really does suck! 

    Hope you enjoy a side effect free weekend. :)


  • Bluebird-DE
    Bluebird-DE Member Posts: 1,233
    edited November 2017

    Good to hear all who are getting good results - Dianarose, Sarah, Minxie, others.

    Anna - I had a mixed response and am remaining on Xeloda to the sake of the positive it is doing by clearing the lymph nodes that were suffocating me. But the liver lesions had progressed and one is huge enough for the oncs to say they cannot get all of it w radiation or chemo...., so there is one problem. To take two chemos or what to do. I have not had it addressed yet, waiting for the new onc at the new center so I will let you know. I do know I want to remain on Xeloda at all costs, never want to go through again what the lymph node masses did to me for almost a year of growth. So I will fight for my Xeloda.

  • pajim
    pajim Member Posts: 930
    edited November 2017

    MissMonty, no I don't take any supplements. But many ladies do -- of all sorts -- and find it helps them. There's a conversation on this thread about five pages back discussing various supplements.

    I just love the fact that on my week off I don't take any pills. For the first time in almost nine years.

  • JFV
    JFV Member Posts: 341
    edited November 2017

    After a miserable 6 months on Ibrance my cancer has continued to grow in my bones. One of my problems has been that I keep getting sick and develop low grade fevers and terrible body aches every month. I'm laying g in bed with a fever right now even though I haven't taken ibrance in a month.

    My Xeloda shows up on Tuesday. I was wondering if anyone saw improvements in their ability to fight infections while on xeloda.

  • JFV
    JFV Member Posts: 341
    edited November 2017

    Dianarose so so happy to hear your good news !!!!

  • pajim
    pajim Member Posts: 930
    edited November 2017

    JFV, last year (on Ibrance) I caught a cold every six weeks like clockwork. It didn't help that I spent a lot of time on airplanes. Since I started Xeloda in June, even more airplanes but only one cold.

    Fevers and body aches mean infections, not colds. Could you have an infection that keeps recurring when your blood counts get low? Have yours counts come back to normal? Has your health care team investigated this?

    I'm sorry about the progression. That sucks.

  • JFV
    JFV Member Posts: 341
    edited November 2017

    Thank pajim, I do have an immune disorder called CVID. I am missing gamma globulin. And that does make me much more prone to infections particularly sinus and urinary tract. I get an infusion of gamma globulin monthly. Prior to the cancer diagnosis the infusions t made a huge improvement in my ability to fight infections. But, once I started Ibrance my infections multiplied and intensified.

    I know xeloda has the same warnings about immune system problems as Ibrance but works in a different way. I'm hoping to see some improvement. Meanwhile, I do take a lot of antibiotics. I have been trying to communicate with my immunologist about my issue without making an appointment. But, unless I see a quick improvement with xeloda. I'll add an appointment with him to my endless list of medical stuff.