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Padley's avatar
Padley
Member
7 years ago

Xeloda

I have TNBC, diagnosed Jan 2017, AC, Taxol, Lumpectomy, Carboplatin, Radiotherapy ( 25 +5). Finishing mid January 2018. I did a bit of research and asked about Xeloda post op and post radotherapy.
Just seen (yet another) oncologist and was offered Xeloda ( she had read my notes and thought I might like to consider it an option.... for 6 months to improve chances of no recurrance/spread ??) .

I had bone and chest CT prior to treatment, all clear.  havent had any scans since finished and did had full metabolic response (PET) prior to op, but not full pathological response ( several of the 24  nodes removed were dodgy).

I was very upset because I had asked about Xeloda prior and told no, not an option for me ( not on the trial at any rate as not HER 2 negative enough. )

Why am I being offered this now? There are no different results to be looked at.

I have said no..... not right now. Off to UK for 6 weeks and I feel so well, i dont want to be miserable on holiday.  Will revisit in July after having bone scan and chest CT....

Any comments/advice would be gratefully received.
  • @Jen001 me too! I’m starting capecitebine shortly, am wondering/ worried about side effects and anything else that you wished you knew! My treatment and diagnosis was very similar to yours, just started a year later. X
  • Jen001 I am unsure you will see this over two years down the track but if you do I am on a similar track as you about to start radiation treatment and then 6mths of Capecitabine.  I wondered what daily dosage you were given as I was encouraged how well you seemed to cope with it. I hope you are well Thank you
  • Hi,
       Thanks for your responses. I had a great trip to UK, had bone scan and chest, abdo, brain CT in July, all clear. Did a lot of thinking and decided to NOT take Xeloda (very brave or foolish). But, becuse I had the clear scans, because I had the carboplatin, because of various other quite serious stuff happening in the family, and with oncologist support etc. 

    Not regretting my decision, but had I been offered it post surgery instead of the carbo. I would have said yes, of course !

    I am so glad we have the options that we do.


  • I was diagnosed end of April 2017, chemo, then radiation took me through to January 2018, Surgery start of February 2018, commenced with Xeloda exactly 4 weeks after surgery.  At the time of being prescribed, both my oncologist and surgeon said it was a very new way in which they were using an existing drug for TNBC to avoid recurrence.  I am very grateful to them for being at the forefront of latest treatment knowledge and that the drug is funded under the Pharmaceutical Benefits Scheme.    

    Jen
  • Rest of my post dissappeared ? And now i cant remember what I said.. it was good ...  :)
  • Thanks Jen, you dont say when you were diagnosed ? I have met another TNBC person who similar to you is about to start Xeloda post radio. ( ie no carboplatin... which I could have done without, quite frankly
  • Hello Padley,

    I am also (or was) TNBC and currently taking Xeloda (capecitabine)  post neoadjuvant treatment and surgery to avoid recurrence. 
    Below is a copy of text I wrote on a previous forum post. 

    ---------------------------------------------------------------

    For me, after neoadjuvant treatment and recent surgery, I am now on a course of oral capecitabine (xeloda) to destroy any micro metastatic cells that might be lurking after the surgery, given I had positive nodes removed under my arm, (PCR in my breast and no other cancer elsewhere in my body). My understanding is capecitabine is an existing approved drug in Australia used for treatment of metastatic cancers. There is a recent study in Japan called CREATE-X which had exceptional results from giving capecitabine to people with positive nodes or not receiving PCR after neoadjuvant treatment to increase their disease free survival rates. The results from the study were extremely favorable to TNBC.

    I am truly grateful to my surgeon and oncologist for being given capecitabine as my chances of 
    recurrence after neoadjuvant treatment were much higher than I would have liked (or what the would have liked too). I suspect with the results from the Japanese study the use of the drug will increase for those with TNBC similar to myself. 

    ---------------------------------------------------------------

    I am now on my 4th cycle and have really had minimal issues, the main being some tiredness and dry skin.   I've remained working as a teacher / librarian  and recently returned from an overseas holiday while taking the drug.  


    In answer your question about why you are being offered capecitabine now and not previously, I think it is to do with a very recent change in treatment for TNBC after neoadjuvant treatment, not so much a change in your results.     As I said previously, I am very happy to have this opportunity as I want to remain (and will) cancer free.  

    Have a wonderful trip to the UK.

    Jen