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)

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

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.

@Mellyb , like the other girls here I wouldn't be taking anything on board until you've had scans to confirm Xeloda isn't working. I would definitely get in touch with your regular oncologists office and ask that they contact them urgently. Did the Locum suggest stopping the Xeloda because again until you saw or heard from your regular oncologist I would be hesitant to do so ( unless other levels in your blood work aren't stable ) I have just been dignosed with stage 4, my cancer is currently contained to my aux lymph node,a spot at the base of my neck C7and was in a couple of nodes across my chest these have since shrunk or disappeared. I started Xeloda almost 6 weeks ago and am about to start my 3rd cycle, all is going well so far thankfully. My oncologist is rescanning me after the 4th cycle and if Xeloda isn't doing what it should she said there are many other options available. I realise our treatments are different and you are further down the treatment line to me but there is always something. I have a girlfriend 2 years on from her stage 4 diagnosis, her spine was full of mets as was her liver she is now in remission. Her treatment is still 3 weekly and she has been through the wringer but she is really well and stable currently. I know how being told there is nothing they can do would be horrifying but without those scans no one can say that with any degree of certainty. Get on that ph @Mellyb and get them getting you some decent follow up and care!

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.

Hi MellybSimilar to you, I was on Xeloda for a very successful 12 months until February this year. I also ‘thrived’ on Xeloda as it gave me ‘my life back’. I have very extensive bone mets but my main ‘issue’ is my extensive peritoneal mets. All my Tumor Markers (TMs) - CA15-3, CA125 and CEA doubled in 6 weeks. My MO changed me to Eribulan (IV Chemo) in early February which has, to date, been quite successful. It is very tolerable and I have really no side effects.I would recommend that you suggest Eribulan to your MO together with scans. My very best wishes, good luck, Jane

Xeloda working or not? The end?

Sister
Member
6 years ago
When is your onc back from overseas @Mellyb? Is there someone else you can see other than the locum?
Mellyb
Member
6 years ago
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.
Sister
Member
6 years ago
Fingers crossed that you can talk to someone.
Mellyb
Member
6 years ago
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_03
Member
6 years ago
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
Mellyb
Member
6 years ago
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..
angg66
Member
6 years ago
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.
Mellyb
Member
6 years ago
Thanks @angg66 definitely not accepting this as sufficient evidence.
brightspace
Member
6 years ago
@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
Sister
Member
6 years ago
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.