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Topic: How long have you been successful on Xeloda

Forum: Stage IV and Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Oct 30, 2015 08:16PM

mandymoo wrote:

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.

"Don't give in to the disease" Dr Phil McGraw Dx 12/13/2006, IBC, 3cm, Stage IIIB, Grade 2, 11/22 nodes, ER+/PR+, HER2- Chemotherapy 12/28/2006 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 5/20/2007 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Dx 11/17/2012, IBC, Stage IV, ER+/PR+, HER2- Chemotherapy 11/27/2012 Xeloda (capecitabine)
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Oct 30, 2015 11:28PM sandilee wrote:

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.

- 4/2015- Mets to liver. 6/2011-Mets to spine, ribs, and skull, 6/2011 radiation, Xgeva and Faslodex 7/2011 Dx 11/2007, IDC, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR-, HER2- Hormonal Therapy 1/10/2008 Aromasin (exemestane) Dx 6/2011, IDC, mets Radiation Therapy 6/30/2011 Bone Hormonal Therapy 7/15/2011 Faslodex (fulvestrant) Hormonal Therapy 4/10/2015 Femara (letrozole) Targeted Therapy 4/20/2015 Ibrance (palbociclib) Chemotherapy 8/3/2015 Xeloda (capecitabine) Hormonal Therapy 3/11/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 31, 2015 02:00AM Kessala wrote:

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

Bone mets at initial diagnosis. Liver mets discovered Sept. 2011. On Xeloda for 3 1/2 years before it stopped working. Ibrance and Faslodex combo is next. Dx 10/12/2005, IDC, 5cm, Stage IV, Grade 2, 3/19 nodes, mets, ER+/PR+, HER2-
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Oct 31, 2015 06:37AM - edited Oct 31, 2015 06:38AM by Dvdsp

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

Dx 12/18/2008, IDC, Right, 1cm, Stage IA, 0/3 nodes, ER-/PR+, HER2- Surgery 2/10/2009 Lumpectomy: Right Chemotherapy 3/5/2009 AC Radiation Therapy 6/10/2009 Whole-breast: Breast Dx 11/14/2014, Right, Stage IV, metastasized to lungs, ER+/PR-, HER2- Hormonal Therapy 2/1/2015 Femara (letrozole) Chemotherapy 8/15/2015 Xeloda (capecitabine) Hormonal Therapy 6/2/2016 Faslodex (fulvestrant)
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Oct 31, 2015 07:29AM hansaim wrote:

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.

Dx 3/2011, IDC, 3cm, Stage II, Grade 3, 1/9 nodes, ER+/PR+, HER2- Dx 7/14/2013, Stage IV Targeted Therapy 1/9/2017 Ibrance (palbociclib) Hormonal Therapy 1/9/2017 Faslodex (fulvestrant) Chemotherapy Halaven (eribulin) Targeted Therapy Afinitor (everolimus) Hormonal Therapy Faslodex (fulvestrant) Chemotherapy Xeloda (capecitabine) Chemotherapy Abraxane (albumin-bound or nab-paclitaxel)
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Oct 31, 2015 08:56PM - edited Oct 31, 2015 09:00PM by mandymoo

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

"Don't give in to the disease" Dr Phil McGraw Dx 12/13/2006, IBC, 3cm, Stage IIIB, Grade 2, 11/22 nodes, ER+/PR+, HER2- Chemotherapy 12/28/2006 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 5/20/2007 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Dx 11/17/2012, IBC, Stage IV, ER+/PR+, HER2- Chemotherapy 11/27/2012 Xeloda (capecitabine)
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Nov 1, 2015 01:29PM leftfootforward wrote:

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.

Dx 12/13/2010, IDC, 3cm, Stage IIIA, Grade 2, 1/16 nodes, ER-/PR-, HER2+ Dx 12/4/2012, IDC, Stage IV, 0/0 nodes, ER-/PR-, HER2+
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Nov 1, 2015 04:13PM stagefree wrote:

hey there!

Check out my footnote ;) and hang on!

Hugs,

Ebru

Dx 4/9/2012, IDC, Stage IV, Grade 1, mets, ER+/PR-, HER2- Chemotherapy 4/11/2012 Xeloda (capecitabine) Hormonal Therapy 8/24/2012 Chemotherapy 6/8/2016 Cytoxan (cyclophosphamide), Xeloda (capecitabine) Hormonal Therapy 6/8/2016 Arimidex (anastrozole), Zoladex (goserelin)
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Nov 2, 2015 01:02AM fujiimama wrote:

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

:-) fujiimama ....a bit of a conundrum...pet/ct/tumor markers clean....but one heck of a bone met...T11 obliterated Dx 4/20/2011, IDC, 3cm, Stage IIIB, Grade 3, 2/16 nodes, ER+/PR+, HER2+ Dx 4/20/2011, DCIS, 6cm+, Stage IIIB, Grade 3, 2/16 nodes, ER+/PR+, HER2+ Targeted Therapy 5/12/2011 Herceptin (trastuzumab) Chemotherapy 5/12/2011 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 9/22/2011 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 11/26/2011 3DCRT: Breast Dx 6/4/2012, Stage IV, Grade 3, mets, ER-/PR-, HER2+ Radiation Therapy 7/18/2012 3DCRT: Bone Targeted Therapy 9/12/2012 Herceptin (trastuzumab) Targeted Therapy 9/12/2012 Perjeta (pertuzumab) Surgery 4/24/2014 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Nov 6, 2015 12:19AM lulubee wrote:

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.

Mercy, Courage, Grace. 1st DX 8/07: ILC & IDC, multi-focal/multicentric, ER+PR+ Her2-, no nodes. BMX+lat flap. 10/10: STAGE IV extensive ILC bone mets. 12/16: progression in bones & pericardium. Surgery 9/6/2007 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Latissimus dorsi flap, Tissue expander placement; Reconstruction (right): Latissimus dorsi flap, Tissue expander placement Hormonal Therapy 11/6/2010 Femara (letrozole) Surgery 11/6/2010 Prophylactic ovary removal Hormonal Therapy 2/1/2012 Faslodex (fulvestrant) Hormonal Therapy 5/15/2012 Aromasin (exemestane) Targeted Therapy 5/15/2012 Afinitor (everolimus) Chemotherapy 10/1/2013 Xeloda (capecitabine) Hormonal Therapy 1/13/2017 Aromasin (exemestane) Targeted Therapy 1/13/2017 Ibrance (palbociclib) Chemotherapy 1/26/2017 Taxol (paclitaxel)
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Nov 6, 2015 06:07PM mandymoo wrote:

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!!

"Don't give in to the disease" Dr Phil McGraw Dx 12/13/2006, IBC, 3cm, Stage IIIB, Grade 2, 11/22 nodes, ER+/PR+, HER2- Chemotherapy 12/28/2006 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 5/20/2007 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Dx 11/17/2012, IBC, Stage IV, ER+/PR+, HER2- Chemotherapy 11/27/2012 Xeloda (capecitabine)
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Nov 6, 2015 11:06PM Texasrose53 wrote:

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

Living and loving life each day to the fullest! Dx 9/12/2013, Left, 2cm, Stage IIIA, Grade 3, 4/22 nodes, ER-/PR-, HER2- Surgery 10/22/2013 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/25/2013 TAC Radiation Therapy 4/9/2014 Breast, Lymph nodes, Chest wall Surgery 2/26/2015 Dx 5/1/2015, 1cm, Stage IV, 2/0 nodes, ER-/PR-, HER2- Chemotherapy 5/22/2015 Taxol (paclitaxel) Chemotherapy 11/20/2015 CMF Chemotherapy 11/28/2016 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 2/21/2017 Halaven (eribulin)
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Nov 7, 2015 05:15PM - edited Nov 7, 2015 05:16PM by mandymoo

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

"Don't give in to the disease" Dr Phil McGraw Dx 12/13/2006, IBC, 3cm, Stage IIIB, Grade 2, 11/22 nodes, ER+/PR+, HER2- Chemotherapy 12/28/2006 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 5/20/2007 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Dx 11/17/2012, IBC, Stage IV, ER+/PR+, HER2- Chemotherapy 11/27/2012 Xeloda (capecitabine)
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Nov 8, 2015 07:40AM kaayborg wrote:

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

Dx 6/24/2014, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 7/16/2014 Lumpectomy: Left Chemotherapy 8/21/2014 AC + T (Taxol) Surgery 1/4/2015 Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/31/2015 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Dx 7/24/2015, 6cm+, Stage IV, Grade 3, ER-/PR-, HER2- Chemotherapy 6/21/2016 Carboplatin (Paraplatin) Chemotherapy Carboplatin (Paraplatin), Gemzar (gemcitabine)
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Nov 9, 2015 07:56PM Naniam wrote:

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.

Dx 8/18/2005, IDC, Right, 3cm, Stage IV, metastasized to bone, Grade 2, 0/7 nodes, mets, ER+/PR+, HER2-
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Nov 11, 2015 06:53PM - edited Nov 11, 2015 06:54PM by mandymoo

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.

"Don't give in to the disease" Dr Phil McGraw Dx 12/13/2006, IBC, 3cm, Stage IIIB, Grade 2, 11/22 nodes, ER+/PR+, HER2- Chemotherapy 12/28/2006 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 5/20/2007 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Dx 11/17/2012, IBC, Stage IV, ER+/PR+, HER2- Chemotherapy 11/27/2012 Xeloda (capecitabine)
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Dec 8, 2015 05:54AM amred wrote:

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

Diagnosed Aug 2005, Diagnosed mets Sept 2009, Doing well, got >3 years from Xeloda, 1 and 3/4 years on Abraxane. Going to try Xeloda again ?! Dx 8/2/2005, IDC, 5cm, Stage IV, Grade 3, 18/26 nodes, mets, ER+, HER2- Hormonal Therapy 4/1/2010 Fareston (toremifene) Hormonal Therapy Arimidex (anastrozole) Chemotherapy Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy Xeloda (capecitabine) Surgery Mastectomy: Left Hormonal Therapy Aromasin (exemestane) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Mastectomy: Right Chemotherapy TAC Radiation Therapy Surgery Lumpectomy: Right Hormonal Therapy Chemotherapy Xeloda (capecitabine) Chemotherapy Other
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Apr 19, 2016 10:28PM Hollysinger wrote:

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.

Dx 1/13/2009, ILC, Right, 1cm, Stage IV, metastasized to bone/other, ER+/PR+, HER2- Chemotherapy
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Apr 20, 2017 07:12PM - edited Apr 20, 2017 07:14PM by Priyank123

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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Apr 20, 2017 07:51PM mandymoo wrote:

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


"Don't give in to the disease" Dr Phil McGraw Dx 12/13/2006, IBC, 3cm, Stage IIIB, Grade 2, 11/22 nodes, ER+/PR+, HER2- Chemotherapy 12/28/2006 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 5/20/2007 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Dx 11/17/2012, IBC, Stage IV, ER+/PR+, HER2- Chemotherapy 11/27/2012 Xeloda (capecitabine)

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