Xeloda

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Jd720
Jd720 Member Posts: 12
edited February 2019 in Triple-Negative Breast Cancer

Hi Everyone!!! I'm 45 and was diagnosed with triple negative in February stage 2 grade 3. Mylump was 2.5 then doubled to 4.0 cms In two weeks. I was positive for the palb2 gene. I had chemo ac/and taxol which ended June 11 and had double mascectomy with partial reconstruction on July 23. Removing the lump at surgery it was 1.2 cms - (12mm) stage 1 grade 3. Pathology report stated the primary tumor is pT1c and pno- i have nothing in my lymph nodes. After hearing the pathology report I was very upset I had a residual lump after chemo. At my follow up visit with my oncologist we briefly celebrated being cancer free and thenshe briefly mentioned xeloda gave me a study done on it in Japan. She said it was up to me and we would discuss it more at our next visit. My oncologist did not push but mentioned it and gave the confusing study. She said she would be watching me like a hawk either way

Reading the study in Japan was very confusing and upsetting so I went to my other doctor/surgeon and asked to help read this. He said it was a study in Japan that was done in the 90s that showed only 8 percent increase in survival. He mentioned the study represents one ethnic group in Japan which each ethnic group has different survival rates with Asians having the highest survival rates of all ethnic groups and only half the people finished the study. I have serious lung issues which the chemo knocked out my lungs and my joints in my legs so I have to way the side effects very carefully as my immune system was compromised even before chemo. I went in Facebook groups asking this same question and I was told there were no further studies and only a new recent study is under way in America. I have yet to find anyone with a success story taking xeloda so want to know about side effects and if anyone is taking or found success with xeloda. I don't not feel comfortable at all taking xeloda with not much proof of any success with long termside effects that are unknown. I do understand fighting this thing with all that I have but I want to make sure it's worth putting my body through this when i can not find any proof. . I did not blink twice at a strong treatment of chemo nor had to think twice about a double mascectomy. This xeloda though seems to be giving a great deal of unsureness.Thank you in advance.

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  • Jennifer522
    Jennifer522 Member Posts: 254
    edited August 2018

    My understanding is the CREATE-X study is more recent and the study was stopped early, as it showed improvement in survival especially for TNBC. I know there is some debate of how asian women react to the drug compared to caucasian or any other race. I don't think its been used in the US for very long in early stage, so it would be hard to find long term success stories. Maybe 2 years or less? I admit I do feel like a bit of a guinea pig with this treatment.

    My path after mastectomy showed 7 mm residual, making me ypT1b. I have a pretty conservative oncologist and even he recommended Xeloda for any residual. He was willing to go the 6 rounds rather than the standard 8. But I am trying for 8, as long as I can tolerate it.

    It's not a walk in the park for me but I am managing. The side effects started hitting me harder on round 4. I am now finishing my round 5 off week. As for side effects, my feet hurt for 7-9 days of the 21 day cycle, my fatigue is worse than IV chemo, loose stools with stomach cramps here and there, body aches. Other than those bad days it's just annoying for me to take pills but life goes on as normal. My blood work taken during those worse days show I am slightly anemic and/or deficient in B12. I was very anemic during AC but bounced back during taxol.

    I was willing to give it a try. Since rads are not recommended and I don't qualify for most trials (most want residual to be 1 cm or more and/or positive nodes).


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  • Jd720
    Jd720 Member Posts: 12
    edited August 2018

    Hi Jennifer I hope these weeks go by fast for you and Godspeed!!!! Yes the create X was the trial that took place in Japan an older study recently published in the New England journal of medicine. I tried to look up studies to show different ethnic groups and could not find any but only found this mention of studies that were not positive? I was trying to find out and long term side effects and find that difficult to find.

    https://www.nature.com/articles/s41523-017-0029-3

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  • IntegraGirl
    IntegraGirl Member Posts: 147
    edited August 2018

    I took Xeloda from Oct 2017 to April, 8 rounds in total...2 weeks on, 1 week off. My dose had to be reduced at about Round 3-4 because my feet were getting quite sore. I found it overall to be fairly manageable. I was fatigued but how much of that was Xeloda and how much was the cumulative effect of being sick and months of harsh treatment, who knows. The biggest side effects were sore feet for me. I kept my feet and hands moisturized with a cream with a high urea content but they still got pretty tender. I also would have an upset gut on the second week.

    It took a few months after I finished to start feeling more myself. Good luck with your decision


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  • Lucyred
    Lucyred Member Posts: 64
    edited October 2018

    I am on my 2nd day of my 2nd cycle of xeloda with 6 more to go at some point. So far my symptoms are not that bad, I have seem to have indigestion at night and have no desire to eat even on the week off. My sleep tends to get less and less as the cycle goes on. I am watching my feet and hands carefully but so far so good but it's early still.

    I had my BMX in July and had 90% of my tumor still in tact, the chemo only killed 10%, which was 4 cm to begin with.

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  • Jd720
    Jd720 Member Posts: 12
    edited February 2019

    Thanks everyone for your input and the article I most appreciate it. My oncologist was on the same page and felt the residual cancer was small enough that she herself would not take it and would be comfortable with me on passing this by. I wanted to focus on getting back to myself and getting stronger. I just had my implant surgery all went well and very happy. A few days later I got sick from my kids who were only sick for 3 days and I was knocked out for two weeks with the flu. It made me realize how my immune system still has not recovered. Doing much better now. This month is one year from diagnosis - I remember it like yesterday. God bless and Godspeed everyone hugs to all!!!

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  • ventureval
    ventureval Member Posts: 23
    edited February 2019

    Hello

    I to hook Xeloda. I had already done my 2 rounds of IV chemo the Red Devil and Taxol. This was brought to me as an extra precaution. I had to take 5 pills in the morning and 5 pills at night 14 days on 7 days off. I barely got through almost to the first weeks. This med made me more sick than the other 2 meds above. I lost 10llbs in 9 days. I was super constipated which it says you will be the other way around. I was super miserable. It made my nurapethy worse in my feet. So for me I had to stop it and pray that what I've already have done has been enough.

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