Anyone stage 3 taking Xeloda?

Miamimi
Miamimi Member Posts: 16
edited September 2018 in Stage III Breast Cancer

Hello All,

My oncologist is highly encouraging me to take Xeloda for 6 months -the pill form.

I'm a stage 3A, ER + PR+ HER 2- : 2 /17 lymphs

Tumor 6.2cm

Neoadjuvant chemo ( AC and Taxol) with residual disease. Surgery in October 2016 ; radiation finished last week; tamoxifen started yesterday . Xeloda is supposed to start next week but I wanted to see if anyone has gone this direction as it is not the standard of care. Any thoughts / insight would be grea

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited January 2017

    Hi, Miamimi. I wanted to throw the kitchen sink at my cancer, and after looking at some new clinical studies, I convinced my MO to prescribe Xeloda for me. You're right, it's not currently the standard of care for Stage III, but it appears to help lead to favorable outcomes for us.

    I found it an easy drug to take. It didn't make me lose my hair or feel sick/tired. My toes got some strange blisters, but that resolved as time went by.

    Everyone has to make their own decisions about treatment, but I was glad to have another weapon to use against the beast.

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  • YATCOMW
    YATCOMW Member Posts: 664
    edited January 2017

    I did not do Xeloda......but I did do another chemo regime after doing TAC nearly 13 years ago.......my oncologist felt that there are some cancer cells that become resistant to TAC so he would hit them with something totally different to sop up any stray cancer cells.....then add Femara to keep everything in check. I had a huge tumor and tons of malignant lymph nodes....so throwing the kitchen sink at me was just fine for me. Xeloda seems to be pretty doable.


    Jacqueline

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited January 2017

    YATCOMW, you are just the best. You've been a beacon of hope for us for a long time, and I love reading your helpful, hopeful posts. God bless you, girl.

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  • YATCOMW
    YATCOMW Member Posts: 664
    edited January 2017

    Aw.....thanks.....I try;)


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  • Mom_of_twins
    Mom_of_twins Member Posts: 180
    edited January 2017

    Miamimi,

    Can I ask where you are being treated? I've asked for Xeloda, but haven't found an oncologist who will prescribe it for ER+ patients. I think it's a great option, and shows promise for those of us with residual disease. I have heard that it's fairly tolerable.

    Sounds like a great opportunity and I think a lot of us (including me) would jump at that chance!! I know more chemo isn't desirable, but we all want to do whatever it takes to keep this cancer away forever!! Would love to hear more about where you're treated. As I said, I consulted with 5 oncologists requesting Xeloda, and none would budge. So frustrating!

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  • Miamimi
    Miamimi Member Posts: 16
    edited February 2017

    Hi There,

    Thanks for the input. I will start to take the Xeloda this week. How long ago was it that you took it? I'm supposed to take it for 6 months.




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  • Miamimi
    Miamimi Member Posts: 16
    edited February 2017

    Hello,

    I am being treated at Stanford Cancer center in Palo Alto California. I am beeb heavilty encouraged to take the drug even though I don't really want to take it.


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  • Miamimi
    Miamimi Member Posts: 16
    edited February 2017

    That's good to know that the generally concensus is that additional chemo therapy is being considered. How long ago did you have the treatment?

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  • Mom_of_twins
    Mom_of_twins Member Posts: 180
    edited February 2017

    Thanks!! I wish I could take Xeloda. It seems that there are some MOs who will prescribe it, but none that I've come across. I just don't know what to do or where to go to get it!! I live in Chicago and would have more peace of mind if I could get the extra chemo (Xeloda).

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  • Momy4ever
    Momy4ever Member Posts: 30
    edited February 2017

    I am supposed to take xeloda for 6 cycles.

    Momoftwins, i can see that you want xeloda even if it's only for your peace of mind but, when I discussed the create X study with my MO, he said that for the er+ patients, the hormone therapy is the way to go. He prescribed it to me after my surgery path report came back TN. I even want to discuss with him if i can take hormones too bearing in mind that i was er+ 25% on my biopsy ( for my peace of mind too) But I a my sure he will decline. We all want to do whatever we can to prevent recurrence but who knows, I have seen on these forums women decline chemo while having positive nodes, and women who couldn't bear the side effect of hormones and stopped it and they are doing fine years after diagnosis. Who knows:)

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  • Miamimi
    Miamimi Member Posts: 16
    edited February 2017

    Are you going to take the Xeloda? I started Tamoxifen 10 days ago. My main oncologist wants me to take the Xeloda. My second opinion seems to be against it. I don't know what to do. Both seem to have good reason for their opinion.

    The 2nd opinion said that in the past additional chemo was given after neo adjuvant chemo and residual disease after surgery and there is no evidence to say that it works. He said that the Create X study had very promising outcome but they integrity of the study could be in question since it wasn't done in the USA.


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  • Mom_of_twins
    Mom_of_twins Member Posts: 180
    edited February 2017

    Miamimi, my MO said the same thing. She is skeptical of the study in general, and said it was odd that nothing has been published on it since the 2015 San Antonio breast cancer symposium. Also she said that Asians definitely metabolize Xeloda differently and it might not be as effective in other populations. Needless to say, she wouldn't budge and refused to prescribe it for me. With that being said, I still think I'd jump at the chance to take it or anything if it "might" help me by even a minute amount!

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  • trinigirl50
    trinigirl50 Member Posts: 343
    edited February 2017

    What about asking your oncologist about Afinitor or Ibrance? Both are targeted therapies used with either Letrozole or Aromasin for Stage 4 women. But with promising results. I know there are ongoing trials for Ibrance. I think the Afinitor trial was completed with promising results as well. Ask your oncologists about both of them. They are definitely for ER+ Her2- disease.


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  • Mom_of_twins
    Mom_of_twins Member Posts: 180
    edited February 2017

    I'm enrolledin the Palbociclib trial (PALLAS) trial, but landed in the control arm. 😔

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  • Miamimi
    Miamimi Member Posts: 16
    edited February 2017

    I started the Xeloda today for 6 months . I'm stage 3 not stage 4 so this is more preventative for the recurrence because of the residual disease that I had at surgery. I'm not sure if I should be on it and if it's overkill but I'll give it a shot...

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  • Paisleyskies
    Paisleyskies Member Posts: 24
    edited February 2017

    Hi Miamimi,

    I am about to start my 4th round of Xeloda tomorrow. I am too taking it for 6 months. I had 2 tumors, 1 triple negative and 1 HER2+. I had residual cancer in my breast and in 1 lymph node so it was recommended that I take Xeloda after rads. It has been pretty tolerable, just took a little tweaking to get to the right dose, we definltey started too high. I am working full time and the mom of a 2 year old so I need to be able to function.

    My primary advice would be hydration and to move slowly to avoid becoming lightheaded.

    Best of luck and feel free to PM me with any questions.

    Edited to add: There is no such thing as overkill when fighting cancer!! keep kicking butt however you can.

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  • HarleyDream
    HarleyDream Member Posts: 17
    edited February 2017

    Hi All! I will begin 6 months of Xeloda next Monday. Not looking forward to more chemo but way to many loved ones not to give it a try! I have "creeped" on the message boards for the last year. I'm ready to become a part of them now! I look forward to having some friendship with ladies going through the same process as me! Sorry we are all here, but thankful we have each other!

    And to note, my username HarleyDream, are my two horses squished together. They are tired of this cancer journey too!😂

    I'm looking forward to a positive journey through the Xeloda and feel fortunate that I will receive it! (That's me convincing my brain that I can't wait to have more chemo😂.) Thank goodness we will have hair this go round.....it's so much easier to face life with bangs!!!!

    - HarleyDream


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  • Paisleyskies
    Paisleyskies Member Posts: 24
    edited February 2017

    Welcome HarleyDream!

    I started my 4th round of Xeloda today. I am with you, way too many loved ones to not do all of the treatment that is offered to me and YES, life is much better with hair!! The Xeloda has not been that bad, it just took getting to the right dose to manage side effects.

    Best of luck with your Xeloda journey and please let me know if you have any questions.

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  • KayaRose
    KayaRose Member Posts: 183
    edited February 2017

    Momy4ever, Just a question - Are you considered ER negative even though your biopsy showed 25% ER positive? I'm asking because I was only 25% ER + and my MO said I was ER positive and is treating me that way. However, it's always made me wonder if taking Arimidex was going to do any good with such a low percentage positive. I've questioned it several times and her answer is always that yes, it will help and yes, I am ER positive.

    Just curious, thanks.

    Kaya

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  • Mom_of_twins
    Mom_of_twins Member Posts: 180
    edited February 2017

    Hi KayaRose! I see you're in Northbrook...I live in Hinsdale. Where are you being treated? I've been looking to take Xeloda due to residual disease, but no oncologist has recommended it to me due to being hormone positive. Just interested to hear your story and would love to connect!


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  • SSInUK
    SSInUK Member Posts: 245
    edited February 2017

    Hey mom of twins. I know you have posted a lot about wanting to do more for residual disease though honestly many on this stage 111 forum would take your post chemo stats any day... but I thought it might help you to know that I discussed with my Onc friend last night what would happen if I found out after my PET scan tomorrow (ugggghhh) that I had progressed to stage 4 and she thought it likely id be moved to a different hormone treatment (extemestane). So that is how much docs' experience tells them anti hormonals are our most powerful relevant weapons. And you're on one. If you want to go further, how about oopherectomy? And any reason why not Letrozole (Fermara)? I think generally it is deemed marginally the most effective AI

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  • HarleyDream
    HarleyDream Member Posts: 17
    edited February 2017

    Good luck Paisleyskies on round 4!!! I'm going to visit family over the weekend and then dive into round 1 on Monday! Thanks for the warm welcome and I look forward to hearing about your experience on this round! Hopefully it will be easy for you! Fingers crossed!!!

    -HarleyDream

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  • Mom_of_twins
    Mom_of_twins Member Posts: 180
    edited February 2017

    Hi SSinUK, good luck on your PET scan!! Do you get results right away?? I'm optimistic you'll have great results. :)

    And thanks for the suggestions. I actually had an attempted oophorectomy that went horribly wrong in September 2016. They insufflated my abdomen too quickly and I had a severe vasovagal response. My heart completely stopped and I had to be resuscitated. So awful. They aborted and Ispent several days in the ICU. Anyway, that's why I'm doing Zoladex because my ovaries are still here. Ughhhh. Anyway, I plan on trying again one of these days if i can ever muster up the courage.

    As far as the AI, my MO said all three were equally effective. I didn't realize that Femara has been shown to be a bit more effective. Will ask at next appt.

    Good luck tomorrow. Will be thinking of you and would love to hear how it goes. My bet is it will be great news!! :)

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  • Miamimi
    Miamimi Member Posts: 16
    edited February 2017

    hello ladies,


    I've been on the Xeloda for 6 days so far in my first cycle of 8 cycles ( each two weeks) . So far so good! I can function and gave worked everyday . I'm glad to hear there are others taking this drug for residual disease .i was hesitant but worth a shot to prevent recurrence . I look forward to keeping in touch

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  • Artista928
    Artista928 Member Posts: 2,753
    edited February 2017

    What is residual disease? No clear margins at sx? Thanks

    Miamimi- I used to live in PA then Mountain View. I'm now in Fremont. I get treated at Washington Hospital system. They've been great. :)

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  • Paisleyskies
    Paisleyskies Member Posts: 24
    edited February 2017

    Hi Arista928,

    Residual disease is any cancer cells left after neoadjuvant chemotherapy, before surgery. If there is no detectable cancer before surgery then it is called a PCR (pathological complete response) which tends to be associated with a more favorable prognosis, but of course that is not always the case.

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  • Artista928
    Artista928 Member Posts: 2,753
    edited February 2017

    Thanks Paisleyskies!


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  • Momy4ever
    Momy4ever Member Posts: 30
    edited February 2017

    kaya, your question is very hard. My Mo didn't give me an answer if I should be treated as er + or tn. He said he will revise my surgery slices again then decide. I felt he doesn't know the right answer. I consulted another Mo who said that being er+ by any percentage at any test, I should be treated as hormone positive. I don't know what I will do. I also read a study from MD Anderson saying that any change of hormone receptors after NAC should not alter the treatment plan of the patient.

    Ladies, are you all doing the xeloda for 8 rounds? My mo will give it to me for 6 rounds only, but I'm having the Navelbine for 6 rounds with it too. I wounder shall i ask him to do 8 rounds

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited February 2017

    I did six rounds of Xeloda and Navelbine after rads in 2012.

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  • Momy4ever
    Momy4ever Member Posts: 30
    edited February 2017

    thanks sbelizabeth, you're the only one that I found having done the same as me ( Xeloda, Navelbine for 6 rounds )

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