Xeloda for preventative care

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Miamimi
Miamimi Member Posts: 16
edited March 2017 in Stage III Breast Cancer

Has anyone been offered Xeloda after treatment ( chemo, surgery, radiation and hormone therapy) for stage 3? My oncologist wants me to take Xeloda for 6 months as a preventative measure for recurrence. Anyone else doing this?

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  • trinigirl50
    trinigirl50 Member Posts: 343
    edited February 2017

    I have heard of few stage 3 women doing this. I plan on bringing it up with my oncologist. I want to do it.


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  • Jacklin
    Jacklin Member Posts: 162
    edited February 2017

    I had 1 cycle of xeloda after my treatment (ACT, BMX and rads) but had to stop due to an allergic reaction to the xeloda. I'm disappointed I had this reaction as I wanted to try to reduce my risk for recurrence as much as possible given that I'm triple negative. What's your onc's reasoning for the xeloda? You indicated you had hormone therapy so I assume you're not TNBC?

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  • HarleyDream
    HarleyDream Member Posts: 17
    edited February 2017

    Hi Miamimi! I'm on another forum with you regarding Xeloda! I am beginning the treatment this coming Monday. I read on a different forum Jacklin's post about the allergic reaction. I asked my onc about it and he said 1% of patients were allergic to it. I had a blood test to check on an enzyme called DPD that seems to be the culprit behind the severe reaction. My test came back fine so I'm going to do it. Believe me when I say that I am NOT happy about more chemo! But I love my family so much that I can't imagine not trying everything offered to stay well and be with them for as long as possible. I'm taking the weekend to get my mind right to dive in. I look forward to sharing the experience with you and others! I am triple negative stage III and had a 6.1 cm tumor half on my chest wall and half in the breast. Nodes and margins were clear. However chemo only made the tumor slide back into the breast and off the chest wall. It was the same size at surgery. I'm just not comfortable with that. So, preventative chemo it is!

    I took the study to my onc and he agreed to try it. I will do 8 cycles starting with 3000 a day dosage. I am 5'3" at 120 lbs. I will try to go up in dosage as I time goes on. I just want hopefully minimal SEs for awhile since it is "preventative".

    - So I'm going to see family, ride horses and laugh heartily ALL weekend!!! 🤠🐴Then back down the chemorabbit hole on Monday......🐰

    - HarleyDream

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  • Jacklin
    Jacklin Member Posts: 162
    edited February 2017

    Hi Harley Dream, just wondering about this blood test that you did for DPD. My GI-oncology specialist said there wasn't a reliable test available (maybe that's just in Canada?). I sure wish I'd known that I was allergic to it because I NEVER would have taken the xeloda as I'm still dealing with the side effects today and the doctors are now talking that this might be a lifelong thing for me now. There is a blood test for DPD?????

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  • HarleyDream
    HarleyDream Member Posts: 17
    edited February 2017

    Hi Jacklin! I'm so sorry that your experience was so bad and still ongoing. Today was my first day on Xeloda. I had very bad bone pain throughout chemo (AC + T). I can't remember exactly when it started but I could barely move my body (and I am a very physical person and was in great shape when diagnosed) and it continued past surgery then subsided and now the pain is left in my ankles/knees/hands only. The doctors don't know why that happened to me. Other than that I "sailed" through chemo. Needless to say, when offered Xeloda, I cringed at more chemo and was afraid of the 1% speech from my onc on people allergic to it. I have found myself in all of the "rare" categories so I asked to be tested. Nurse took one vial of blood and my results came back a week later. I will ask the office tomorrow what the actual test name was. Apparently Xeloda is part of the FU drugs and the DPD enzyme comes into play for all of the drugs in that category. (Please note I am repeating what my onc says so I don't know anything more than this.) My heart goes out to you. I'm sorry you have had such a bad experience! Your post from another forum is the reason I asked to be tested. I'm very grateful that you continue to share your experience! I am left searching how to get rid of my residual joint pain. Soooooo very thankful to be alive but I wish I didn't have this pain leftover. What symptoms are ongoing for you leftoverfrom the Xeloda?

    - HarleyDream

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  • HarleyDream
    HarleyDream Member Posts: 17
    edited February 2017

    Jacklin- I just looked through my brochure that the pharmacist gave me on Xeloda. Note below the brochure says to tell the doctor if you lack a certain enzyme dihydropyrimidine dehydrogenase (DPD)....the blood test I took was to determine if I was lacking that enzyme. Also as a side note the FU drugs are 5-fluorouracil. Hope this helps!! -HarleyDrea

    image

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  • HarleyDream
    HarleyDream Member Posts: 17
    edited March 2017

    Hi Jacklin- my onc nurse called to say the name of the blood test I took was : DPD5-Fluorouracil Toxicity.

    -HarleyDream

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  • Jacklin
    Jacklin Member Posts: 162
    edited March 2017

    HI HarleyDream, I so appreciate you getting that information for me, thank you. I'm going to ask my MO why I wasn't given that choice to have that test done. This was the first time I tried this chemo, so I had no idea/clue that I'd be allergic to it. I'm thankful that my 'other' post was helpful and you were able to get this test. I'm a chemist, so I understand that DPD/5-FU relationship completely - I suspect we don't have that test here in Canada, but I'm going to find out.

    I still have ongoing diarrhea, at times I can't get to the bathroom on time, so I wear disposable undergarments all the time, especially when I'm away from the house. I have ongoing belly pain, and bloating to the point that I look like I'm pregnant. I am currently working with an oncological dietician to help find foods that will make me more comfortable....looks like an anti-inflammatory diet is working for the last few days, finally :). I will see my GI doctor in another 4 weeks - she's said that unfortunately, colitis could be a chronic issue for me as a gift from xeloda, but she won't know for another few months. I'm incredibly thankful for all the medical staff that have helped me get to today, but I'm still a long way from feeling good.

    I am sorry to read you're having this bone pain. I had it when I took Neulasta shots 48-hours after A/C chemo, and then again when I became neutropenic on xeloda. I hope that the bone pain subsides soon for you and that xeloda will work wonderfully for you. I only shared my story so that hopefully nobody else ever goes through what I went through - it made you get the DPD5-FU toxicity test, right? Thank you again,

    Jacklin

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  • 7of9
    7of9 Member Posts: 833
    edited March 2017

    Hello,

    I was given the choice of Taxotere or Xeloda. I choice Taxotere and cold capped and cooled hands and feet 4x as it was a shorter segment of time than 6 rounds (2 on 1 off) of Xeloda and probably hand foot issues. It was a quality choice for me (we hiked Yosemite last summer with perfectly fine feet!). My second Onc opinion felt it was good to be off Arimidex for a shorter period of time since the Taxotere was 12 weeks off instead of 18. I also did rads before chemo as there was nothing on my scans. They let me take Arimidex during rads too since I felt naked without it after my ooph. Damn estrogen!

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  • Happiness2point0
    Happiness2point0 Member Posts: 3
    edited March 2017

    hello ladies


    Thanks for starting this post. Had chemo and surgery and was thinking after rad I'll be done and I'll be able to move up and onwards. Pathology test came back that 6cm lump in breast totally gone which was awesome. But the one lesion in one of my lymph node which was 5cm, shrunk to 4cm. Though removed, doc is very concerned and of course me too. Doc asked me to start chemo and rad tgt. and believe me when I say i freaked out for days and cried like a baby deprived of milk for days. 😂


    Then I googled. And everything pointed to it being use for stage 4 and I was so sad and wondered for days if actually doc found other lesions and is just not telling me until I see him.


    Luckily I found this post!!! That it's a preventative chemo for stage3 tnbc.


    So, just want to say thank you! 😘😘😘


    Up up and up!

    Germaine

    Ps: xeloda week2 now. Next Wednesday starting 33 sessions of rad.

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

    My onc gave me Xeloda and Navalbine, after neoadjuvant chemo, mastectomy. About 3/4 through rads I started Xeloda and Navelbine. I'm ER/PR + and Her 2 - but because of my cancer presentation and no PCR, my team opted for more chemo.

    I got some remarkable peeling blisters on my toes from Xeloda. That was the only side effect.

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