How long have you been successful on Xeloda

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mandymoo
mandymoo Member Posts: 815
edited April 2017 in Stage IV/Metastatic Breast Cancer ONLY

In November 2015, I will be on Xeloda for 3 years. It is still working and I was wondering if there are any other long term Xeloda survivors here. Part of me is worried how much longer it will keep me stable and I am hoping to hear from others.

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  • sandilee
    sandilee Member Posts: 1,843
    edited October 2015

    That's wonderful! I can't really chime in as it's a new drug for me, but I'm so glad you posted. You give me hope.

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  • Kessala
    Kessala Member Posts: 189
    edited October 2015

    Hi Mandy,

    I've been taking Xeloda since August, 2013 so just over two years. I, too, hope my good luck with Xeloda goes on and on!

    How are you doing with side effects? What schedule do you use, 14/7 or 7/7?

    Kessala

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  • Dvdsp
    Dvdsp Member Posts: 43
    edited October 2015

    its awesome to hear it! Where are your mets? My mum Is taking cape for 3 months after letrozole failure in just 5 months.. Thanks for your hope! My mum has pleural mets

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  • hansaim
    hansaim Member Posts: 278
    edited October 2015

    Wow, congratulations. Xeloda was great for me for about 16 months. I wish it was longer as I had minimal side effects. I wish you success for a long, long time.

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  • mandymoo
    mandymoo Member Posts: 815
    edited November 2015

    I was diagnosed in November 2012 with mets to the brain (3 different mets there, 1 was Leptomeningeal Carcinoma). mets also in the liver and lungs (Pleural Effusion) as well as the spine, skull and left hip. After about 18 months I was NED in all the organs and I only have mets in my bones.

    I am ER+ PR+ HER_. My initial dose was 4 tablets am and 4 tablets pm (4000mg/day). My schedule was 14 days on and 7 days off. HFS and explosive diarrhea are the main side effects as well as DVT and Lymphedema for me.

    The dose was gradually adjusted in the first few months to 2 tablets am and 3 tablets pm (2500mg/day) and my schedule stayed the same 14/7.

    There has been research to show that the 7 day on and 7 day off is just as effective and because my side effects got worse on day 12, I asked my oncologist to change to the 7/7 cycle about 18 months ago when all the organs were NED . Because I have a blood test every 3 weeks before I start my next cycle, and this is all free for me in Australia, my onc refused to change my cycle. I then decided to change my cycle to 11 days on and 10 days off. The side effects are very manageable now and I have taken a 2 week break a couple of times in the last 18 months just for my own peace of mind.

    I also do some gentle yoga and Tai Chi as well as walking about 15 to 30 minutes a day, hoping that this helps my body stay strong. I also take Calcium and VItamin D3 capsules, Vitamin B complex and Vitamin B12. I enjoy my cuppa and a cake or a biscuit, because that keeps me happy.


    Hoping to hear from others, especially long term Xeloda users


    Warm hugs

    Mandy

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  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited November 2015

    adding that in December I will have been in Xeloda for 3 years. I had mets to my brain and liver. I am NED now and have been for most of my time on Xelida. I amHer 2+ and ER -. My PR status had been negative but a recent tumor removed from my liver showed PR+. That result is still questionable as it is an unusual way for cancer to change. I am also on targeted therapy for the Her2.


    Ask your doc about 7 on 7 off. My docs are not fans as it effectively decreases your dose., but for those suffering from ad SE then it is s good option.

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  • stagefree
    stagefree Member Posts: 2,780
    edited November 2015

    hey there!

    Check out my footnote ;) and hang on!

    Hugs,

    Ebru

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  • fujiimama
    fujiimama Member Posts: 800
    edited November 2015

    Ebru that is fantastic. I'm on it now along with Tykerb. It seems to be working. I'm cm away from NED.

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  • lulubee
    lulubee Member Posts: 1,493
    edited November 2015

    Two years for me! Tumor markers are normal now. Side effects have proven cumulative but are still manageable. I just scale way back and lower my expectations during my weeks on, because the fatigue is insistent.

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  • mandymoo
    mandymoo Member Posts: 815
    edited November 2015

    It is wonderful to see that there are some of us that are having quite long term success. Keep up with the posts and hoping to hear from more ( I have heard a rumour that someone has been on X for 6 years, but that is probably just a rumour.... still you never know).

    My tumour markers have started to increase slowly over the last few months and only progression is my sacrum, so I had radiotherapy to that area yesterday. I am being closely monitored at the moment. Happy that my organs are still NED thanks to Xeloda. 3 Years and getting nervous but ready if there will need to be a change in treatment. However, I wish I could go on with Xeloda for ever!!

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  • Texasrose53
    Texasrose53 Member Posts: 354
    edited November 2015

    Hi ladies....I would like to join in on your discussion board. I have been on Taxol for 18 rounds and reached NED in 10 treatments....tumor markers have started rising but CT scan still shows clear. ONC has ordered a PET/CT to see if something is lurking somewhere....anyway...if I have activity she wants to change me over to Xeloda as my next chemo option. Would love to chat with ya'll about SE's and the awesome success some of you have had. My ONC has said she has had several on it for several years and are still doing great.

    Congratulations Mandymoo, Lulubee, Fugiimama, Stagefree and Kessela....hope I didn't miss anyone! Hoping if I have to change my Chemo drug I have the same success as you

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  • mandymoo
    mandymoo Member Posts: 815
    edited November 2015

    Hi Texasrose and welcome. Wishing you much success with Xeloda. There is another thread called all about Xeloda which discusses side effects etc, However, I can honestly say that side effects differ from every person. Main side effects are hand/foot syndrome (feet start to blister and then crack and bleed, and they feel very hot to touch, same with the hands). Explosive Diahhrea, Nausea and Fatigue.

    Usually you will be put on a high dose of Xeloda initially, and then depending on your side effects and body's response to its effectiveness, then dosage may decrease.

    I hope to see you posting on this board in 5 years time!!! xxxx

    Warm hugs

    Mandy

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  • kaayborg
    kaayborg Member Posts: 613
    edited November 2015

    Texasrose,

    Popped in here cuz Xeloda is next on my list when the time comes and found your scan update. Glad scans were clear but sorry to hear about the markers. Hope you find good answers soon!

    Missy

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  • Naniam
    Naniam Member Posts: 1,766
    edited November 2015

    Hi ladies,

    My run with Xeloda has ended after 39 months. They hit me hard in the beginning with 4500mgs. daily and when I had to stop I was taking 2000mgs. daily due to side effects. My bone lesions started growing and I am truly sorry to be leaving Xeloda behind. A pill of a morning and another one at night was not like taking chemo to me.

    I will get my first dose of Havalen tomorrow. I wish everyone could have the good fortune I did with the Xeloda.

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  • mandymoo
    mandymoo Member Posts: 815
    edited November 2015

    Naniam, congratulations on 39 months. Agreed, initially, the side effects are quite harsh on Xeloda, but gradually when the dose gets adjusted (high dose necessary initially to conquer as many cancer cells as possible). I will look out for your posts on other threads as I am pretty sure that Havalen will be my next chemo when Xeloda starts to fail. Blessings to you.

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  • amred
    amred Member Posts: 10
    edited December 2015

    HI I got 3 years 5 months on oral Xeloda (great for travelling) before we decided markers were creeping up. I should have stopped earlier because the handfoot stuff was getting really bad. Initial reaction was great - took awhile to kick in but it just whacked those markers.

    I've now had 1 year 3 months on Abraxane (via port) and markers creeping up again. Scan is stable, but port site little inflamed.

    Going to try Xeloda again as gong skiing in Jan for 3-4 weeks (cross fingers).

    It's the first time I've gone back to a chemo so I'm little nervous

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  • Hollysinger
    Hollysinger Member Posts: 1
    edited April 2016

    I have been on Xeloda (Capcetabine) for almost a year. This is my third recurrence, 1st time Stage IV. My tumor markers have been going up for the last few months, and last month the CEA jumped up 200 pts. They upped my meds to 4 tabs 500mg. twice a day, 1 week on, 1 week off...I now feel nausea and I never did before on the lower dose. I am er & pr positive & BRCA II Positive...this journey began in 2009, and then recurrence 2013...and then mets 2015. My mets was in my soft tissue in my abdomen and in my bone. I would love to hear how you are doing.

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  • Priyank123
    Priyank123 Member Posts: 11
    edited April 2017

    Hi MandyMoo,

    i was looking to know abt the current status of your leptomeningeal mets! my mom was diagnosed with lepto mets two years back...one year back reports suggested it was cured but recently it has come back to haunt again in form of minor headache episodes and severe inflammation around her neck and shoulder. Otherwise she was living a very normal life, nobody can tell when they see her that she has metastatic cancer. Look forward to interacting with you! You have been a big inspiration when she was initially diagnosed! It was after reading your posts i demanded her docs to add xeloda to her treatment. She has been treated with an aggressive intrathecal methotraxae (mtx)treatment along with xeloda. Few months back mtx injections were stopped and she had been taking only xeloda medication for past few months. Her doctors were planning to stop xeloda and slowly get her back to hormonal therapy after the successful recovery and excellent scans during the last full year. But that i think wont happen now with recent diagnosis of mild leptomeningeal enchacement :(

    I was very clueless and in lots of fear initially when she was first diagnosed with meningeal mets two years back. But posts by Agness and you have been a real inspiration and brought a ray of light for my family in tough times. Google gave a very very bad predicament and so did the docs!! But when i read your posts and ur success with xeloda it was a very big positive for me and xeloda has worked very well for my mom with minimum side effects!!


    Thanks a lot for being so kind and sharing info about ur treatment it has probably saved my moms life!


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  • mandymoo
    mandymoo Member Posts: 815
    edited April 2017

    hi Priyank123,

    Wow! I am so very glad that your mom responded to Xeloda, that is such great news as I know with others that it does not help.

    I was like you, very despondent when I googled LM and delightedly surprised when Xeloda kicked butt and I was NED with LM about 18 months later. Xeloda worked for me for 44 months and then I had progression in the lungs and my tumour markers were rising (Thank goodness scans showed Brain and Liver all clear).

    I have gone on to Afinitor/Aromasin combination, and now after 6 months the lungs are all clear and my tumour markers are almost normal again. Even the innumerable amount of bone mets are finally showing signs of regression. Check with the LM girls for advise as I feel so overwhelmed that I am still clear, although I know that it will be tapping me on the shoulder one day. Keep on doing your research and, yes, by all means try anything. Fingers crossed for you Mum. She is in my thoughts and prayers, and she is so very lucky to have you as a daughter. Saying that, hugs to you as well, as I know how hard it is especially for family. I would love to know how you get on, and keep on with the posts, because we are all here to help each other and with the posts we all learn as well. hugs. xxxxx


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