Xeloda working or not? The end?

MellybMellyb Member Posts: 35
edited May 15 in Metastatic breast cancer
For people taking Xeloda at some point, when did your doctor make the call that it was no longer working? And if it was deemed not to work, what did you get put on next?

On Xeloda for 9 months with amazing results after been sent home to die. Xeloda was a last ditch effort and remarkably it reversed liver mets and got the liver functioning in normal ranges again after been in liver failure with severe ascites. Now able to eat, move and function again.

Latest bloods show CA15-3 moved from 36 to 47. Normal oncologist is overseas. Locum said no point continuing. Xeloda has failed. Body probably can't take harsher drugs. So now it's time to accept fate.

Cannot accept fate. Feel too well. Always thought a scan is needed for concrete proof of how well a drug is doing. Locum didn't send for any scans. 

Would love to know if similar experiences and if xeloda did fail what did you try next?

(have been on femara, ibrance, exemestene, abraxane, halaven, progression on all) 
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Comments

  • SisterSister Adelaide Hills, SAMember Posts: 4,355
    When is your onc back from overseas @Mellyb?  Is there someone else you can see other than the locum?
  • MellybMellyb Member Posts: 35
    Calling tomorrow to find out a return date, or, if he can be contacted where he is with the results for some feedback. There's other oncologists I could call and try to get into for another opinion. But I just don't know how quickly I can do all that.
  • SisterSister Adelaide Hills, SAMember Posts: 4,355
    Fingers crossed that you can talk to someone.
  • MellybMellyb Member Posts: 35
    Thanks sister. I'm cautious posting here. Last time I did, I upset a lot of people. No one likes to think of this stage, but for many this is where it ends. Hopefully I get a few replies of people in similar situation. Or if not, I guess I know it's because they are no longer with us. Sadly. 
  • lrb_03lrb_03 Member Posts: 1,162
    Oh, @Mellyb, it's a potential for all of us who've had early stage disease. I'm amongst the luckier group at this stage, but with a definite lack of trust in my body.

    I read a lot of posts on an international forum called Inspire. Not sure if you've heard of it. They do have a metastatic group. A lot of what they talk about re tumour markers is not to take tgem in isolation as they can sometimes be influenced by other inflammatory processes. So, (a) another reading in a couple of months,  & (b) in conjunction with scans. Most tumour markers, I believe,  aren't overly reliable in breast cancer.

    Thinking of you x
  • MellybMellyb Member Posts: 35
    Thank you @lrb_03 I agree with you and I have read that some oncologists don't rely on them at all. It is individual though and historically it has seemed to indicate growth but in the past the markers have risen rapidly in the hundreds and of course with such a big increase it was taken poorly. But in all those times a scan was always done to back up the marker result.

    This is not a big rise - 11 points and with no scan I feel this doctor is quite dismissive. Perhaps the history is playing a part as only 9 months ago, my family were advised it was the end and sent home to make arrangements... We pushed to go on xeloda in the first place.. And wow what a blast the last 9 months have been.

    Follow your gut instincts.. 
  • angg66angg66 Melbourne VicMember Posts: 188
    Hi @Mellyb. I would get a second opinion & ask for scans. Tumour markers are notoriously unreliable. I have liver & lung mets & my oncologist will do a CT scan to see if a treatment is working. 
  • MellybMellyb Member Posts: 35
    Thanks @angg66 definitely not accepting this as sufficient evidence. 
  • brightspacebrightspace Member Posts: 304
    @Mellyb
     
    Seems that the locum needs to be put out to pasture 

    Yes as others have said ....as you are aware CT Scans are  required to check for progression 
    Blood test not the only test to determine your status
    Definately see another oncologist 
    All the best with next treatment
    Bright in hope
  • SisterSister Adelaide Hills, SAMember Posts: 4,355
    Good to see some others with knowledge have responded @Mellyb ; I don't think anyone with mets should be concerned about posting here.  While I hope that mine doesn't recur, I also know that it's a very real possibility as it was for my sister.  We are in this together, no matter which point we are currently at.  My only hesitation in answering anyone with mets is that I have little knowledge to contribute.
  • Kiwi AngelKiwi Angel Sydney, NSWMember Posts: 1,916
    Big hugs @Mellyb thinking of u and hope u get to see your oncologist or another one soon xoxo. Please don’t be scared to post here! 
  • Lisa1407Lisa1407 Elwood, VictoriaMember Posts: 78
    I would definitely be getting a scan @Mellyb before accepting that Xeloda has stopped working. CA153 not always reliable.
    Also, if Xeloda has stopped working there other newer immunotherapies (ribociclib, paclocilib and amebaciclib) that I guess you have not tried. Trouble is that most are not on the PBS yet. You can always pay for them if you have the means to do so. Don't give up yet!!
  • MellybMellyb Member Posts: 35
    @Lisa1407 Ibrance is a CDK4/6 inhibitor and has already been tried and failed - liver mets progressed to liver failure unfortunately 
  • Lisa1407Lisa1407 Elwood, VictoriaMember Posts: 78
    Bugger!! I hope your regular oncologist has something up his sleeve!

  • primekprimek Broken HillMember Posts: 5,133
    My understanding is the blood tests completely unreliable otherwise they would do them looking for disease progression. Clinical evidence should always be used first...so yes...scans. I wouldn't be stopping anything without more proof than a tiny rise in result which could just as easily be a test anomaly. 
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