Xeloda Group - Jan/Feb 2018 (Early Stage)

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  • Chelsea5
    Chelsea5 Member Posts: 49
    edited March 2019
    Fritzmylove, I had ER/PR+ also and my MO is the one who told me about and put me on Xeloda. He is very data-driven, so would think the success has been established. Good luck. I’ll give you his contact info if you would like to PM me. 💕👊🏻
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  • BeingPositive
    BeingPositive Member Posts: 73
    edited March 2019

    Thank you very much Chelsea5 and buttonsmachine. Very much appreciate your help and guidance.

    Fritzmylove, I am ER/PR + and MO suggested Xeloda. But I was on other side of the fence wondering if I really need such harsh treatment for stage 1b. Then thought of trying it out if it improves chances.

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  • beauz
    beauz Member Posts: 207
    edited March 2019

    Hi Chelsea and buttonsmachine. I am glad we meet again here.

    Beingpositive, I also wonder why your MO want you take Xeloda for stage IB.

    Fritzmylove, my MO suggested Xeloda because I didn't achieve clear margin and my surgeon didn't think further surgery would help me. All the best .

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  • Chelsea5
    Chelsea5 Member Posts: 49
    edited March 2019
    Hi Beauz. BeingPositive, I also wonder about Xeloda for stage 1b. I was prescribed Xeloda because diagnosis after matercomey and axillary node dissection was stage 3a. The number of nodes showing cancer warranted additional treatment.
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  • BeingPositive
    BeingPositive Member Posts: 73
    edited March 2019

    Hi beauz, Chelsea5, MO suggested it due to residual tumor after neoadjuvant chemo. She shared the CREATE-X trial results (I googled it too) where in 2017 they found Xeloda improved survival and reduced recurrence for patients with such residual tumor even for early stage. I'm 40 and want to try whatever I can to avoid going through this again, though we all know nothing is guaranteed. Started dose today and praying that it will do the job.

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  • Chelsea5
    Chelsea5 Member Posts: 49
    edited March 2019

    BeingPositive, now that you said that I recall my MO referring to the residual tumor after neoadjuvamt chemo. I’m glad you reminded us. I had it in my mind the Xeloda was due to lymph node presence but now I’m pretty sure it was for the same reason your MO had you taking it. Hope all goes really well for you. One day at a time 💕

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  • beauz
    beauz Member Posts: 207
    edited March 2019

    BeingPositive, thanks for replying. It makes sense. All the best with Xeloda.

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  • Chelsea5
    Chelsea5 Member Posts: 49
    edited July 2019

    Hi....I’m just checking in. I’ve been back at work full-time for many months now. Still having some issues feeling strong. I’m beginning to understand this is a journey not a a to do list.Hope all is well with y’all.

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  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited July 2019

    Hi Chelsea, it's nice of you to check in! I think you finished Xeloda a little while before I did. Anyway, I can relate to how you're feeling. My energy levels have improved since stopping Xeloda, but I'm definitely nowhere near feeling "back to normal" physically. I still struggle with fatigue. I have wondered how much of that is leftover from all the surgery/chemo/radiation, and how much of it is due to the hormone medicine I'm currently on. Does anyone have any thoughts on that?

    I hope everyone is doing well.

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  • Chelsea5
    Chelsea5 Member Posts: 49
    edited July 2019
    Good to hear from you too ButtonsMachine, I’m glad you asked the question. I know this started as a Xeloda thread, but many of us are now in AI. I’m on Letrozole, and I think some of my “issues” are from that. I am often very fatigued and have bone and joint pain. I think I have sort of been waiting until I felt better to really get more active. Now I’m taking a new approach and forcing myself up and outside. I have read the longterm prognosis is much more positive for women with great muscle mass and not overweight. During the chemo/surgery/radiation/chemo phases I was t thinking about what was “next” ...just doing what was right in front of me. So, my new take on my current problems is to do the same thing and do the right/best next thing. I don’t like those Xeloda commercials which day “she found her new normal” but now, after all these months I’m having to accept that this truly is the new normal and I just have to play the hand I’ve been dealt....one day at a time. 💕💕💕
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  • beauz
    beauz Member Posts: 207
    edited July 2019

    Hi Chelsea and buttonsmachine, very glad to hear from you both. Hormonal therapy definitely has effect on our general well-being. During my 2nd half-year of taking letrozole, I experienced worsening pain, tightness on both shoulders and frequent brown discharge from my vagina. I happened to have a regular check up with a RO and mentioned to her of my discharge. She checked it, which caused me a lot of discomfort, and said it was very red, inflamed down there. She told me to see specialist. I knew my symptoms are caused by letrozole and I have had enough of doctor's appointment. I don't want to take more medicine to treat side effects of another medicine. So I decided to stop letrozole for a week or two… then I just never go back to it. It has been over two months since stopping letrozole and I feel much better. It's solely my personal decision. I have told this to my surgeon during a routine check up and he didn't say much. I will tell my oncologist on my next routine check up in two weeks. After I stopped letrozole, I started practicing Falun Gong. I feel more energetic, much calmer and happier. I have read countless stories of terminally ill people gaining full health after they started practicing Falun Gong.

    Hope to hear from you regularly.

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  • Chelsea5
    Chelsea5 Member Posts: 49
    edited July 2019
    Hi Beauz. Great to hear from you too. I’m so glad you are feeling better. I have never heard of Falun Gong and will check it out. Today I went to the gym. Decided I can’t wait until I feel stronger and will hopefully just push through the letrozole side effects. Will keep y’all posted. I tripped over my own feet this evening whilst walking my dog. Grateful to find I had solid bones. No real harm done. It was a bit unraveling is all. 💕
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  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited July 2019

    Beauz, it's nice to hear from you also. I'm so glad you are feeling better. Hormone medicine is definitely no picnic for many of us.

    I saw my MO this week, and told her about this thumb/hand/wrist/nerve pain I've had the last 2-3 weeks. I suspected that it was because of the Aromasin, but she confirmed it. Apparently it's a known problem that affects some people, and if I continue with this medicine it will only get worse. Aside from being painful, I'll gradually lose hand function. I was advised to stop Aromasin, take a break, and then we'll switch to Letrozole to see if that's any better. One step at a time I suppose.

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  • stephilosphy00
    stephilosphy00 Member Posts: 386
    edited July 2019

    Hi everyone! I finished 6 cycles of xeloda around January / February 2018. I am doing fine now. I agree xeloda is pretty tolerable.

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  • Mariagr
    Mariagr Member Posts: 7
    edited July 2020

    Hi to all!

    I am 39, and was diagnosed with a triple negative breast cancer (non metastatic, stage 2A).

    A year ago I completed my chemotherapy and had radiation afterwards. A few days ago, my oncologist suggested that I should be on Capecitabine as a monotherapy for a year (as an adjuvant -extra - therapy for precautionary purposes). I begun taking four pills per day of 500mg each (five days / week). Can anyone tell me his/her experience being on Capecitabine as a monotherapy? Im worried about hair loss. My oncologist says that i will not lose my hair (again.....) but the SPC of the drug mentions alopecia as a common side effect. Can you tell me your story? Thank you and be well!

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  • Chelsea5
    Chelsea5 Member Posts: 49
    edited July 2020
    Hi Mariagr,

    I didn’t lose my hair while taking Capecitabine. My dosage had to be reduced along the way, and that seems fairly common. I think they want us in as high a dose as we can tolerate. I greatly benefitted from this group. Drink lots of water and use the lotion whether you think you need it or not. You will get through this step just like you did the others. 💕💪🏼
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  • Walkingintheclouds
    Walkingintheclouds Member Posts: 52
    edited July 2020

    I was on Capecitabin for 3 months, no noticeable hair loss. The biggest issue I’ve encountered was muscle pain and hand/food syndrome. Also please keep sunshield handy —Capecitabine is photosensitive that with the intake of capecitabine, you will be more likely to be tanned and burnt. Good luck

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  • Walkingintheclouds
    Walkingintheclouds Member Posts: 52
    edited July 2020

    I’m surprised to see the thread still active two years after it was created and I’m so happy to see those familiar names discussing post -Xeloda treatment — isnt it good to be in a phase without chemo? :)

    For the new users, I feel sorry that you have to come here looking for help. Hope the tips shared within the thread would be useful. Xeloda journey is not fun at all, hope with support, the life will be a little bit easier for you.


    https://instagram.com/p/CC155yngWge/embed/


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  • Chelsea5
    Chelsea5 Member Posts: 49
    edited April 2021

    Hi

    It has been quite some time since I have posted but wanted to reassure those who may be seeing this thread that you can do it.


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  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited April 2021

    Chelsea, thanks for dropping in and saying hello! I hope you are doing well. How are things with you?

    I had a metastatic recurrence in 2020, so that's been a bummer but I'm hanging in there. I'm sending you well wishes!

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