How to manage Xeloda?

[Karen2235]

I was diagnosed with MBC in March this year. I had a mastectomy 5 years ago and was on a maintenance dose of Anastrozole. I am HR negative. When diagnosed I was given radiation for tumour activity in my sternum and a combination of Fulvestrant injections and kisqali medication. I had lesions on the liver which reduced in size but I still had enlarged lymph nodes in and near my armpits. Over the last few weeks something did not feel right and I went for more tests - bone scan, CT scan and blood tests. I was told the hormonal treatment had stopped working and my oncologist suggested Xeloda and to see how I go managing the side effects. Unfortunately I have the added complications of a spinal cord injury and significant scoliosis (curvature of the spine) so I already have very reduced lung capacity and limited mobility. I am 65 years old and have managed my physical disability well but I am concerned about the added burden of side effects of the treatments I have been on. I am breathless and have increasing fatigue and weakness. I don’t know whether to just stop treatment or try the Xeloda and see what happens. Looking for advice and support.

[Hidden]

Oh, dear! Karen2235, I'm so sorry for what you're dealing with, with the existing issues plus the MBC!

I have no personal experience with Xeloda but have read mostly good but some bad on this site. Like most meds, I suppose, and one never knows in advance if it will be tolerated or not?

I'm struck by your breathlessness...It sounds like you have this issue unrelated to the cancer, so can you put that in a separate category/bucket to benefit your *mind*, if nothing else?

My view is *try it*. The Xeloda. How else will you know if it hits you hard or hits the cancer hard? You can always change?

Switching treatments is very unsettling, I know this, but so many times I've seen (in this community) that a change can make a hugely positive difference. I'd reach for that?

Take care...

Lynn

[Karen2235 in reply to Hidden]

Thanks Lynn, I am a friend of Chris. I appreciate your depth of knowledge and I am not giving up yet. Still early days.

[Gwennie123]

I’m 78 and have been on xeloda for 6-8 months. The first month or two took time to adjust. Numbers up and down. Right now the CA15 is coming down. Fatigue in afternoons. Naps. A little neuropathy in fingers and toes. I Find Xeloda very tolerable.You can ask me any questions that you might have.

Gwennie

[Karen2235 in reply to Gwennie123]

Any issues with diarrhoea? Or mouth ulcers?

[Gwennie123 in reply to Karen2235]

Sometimes gassy Mild mouth sores about once a month

[Widdershins3 in reply to Gwennie123]

Thank you, Gwennie. I'm 76 and just finishing up my first 2 weeks on Xeloda and trying to learn all I can about all those side-effects. I was on Enhertu for a wonderful run, but developed what look like ground glass opacities in both lungs. My pulmonologist is trying a month of Prednisone to see if perhaps it wasn't the Enhertu that caused them, so that's probably damping down any side-effects at the moment.

I'm glad you mentioned fatigue--I've had more of that lately and wasn't making the connection to the Xeloda. I got mesmerized by the more dramatic side-effects🙄

[queeneee]

I am on xeloda and have occasional unexplained breathlessness, I am told it is a side effect of chemo, but not 'dangerous' (I cycle 30 mins every day and have no issues with that). I am on 2000mg a day, but take 2 (sometimes 3 ) days off after the first 5 days to let side effects subside.. then continue when they stop..I then take for the remainder of the 14 day cycle and then 7 days off. I find this helps. My oncologist guidance is to take it 'as much as you can' during the 14 day cycle..

[Bestbird]

You may want to speak with your doctor about starting on a lower dose of Xeloda (capecitabine). Blow is one of three studies I've found that concludes that a lower dose precipitates fewer side effects while preserving efficacy.

An analysis of dose modification and outcomes from four Phase II capecitabine monotherapy trials, one Phase III capecitabine/docetaxel combination trial, and an analysis of consecutive MBC patients who received capecitabine outside of a clinical trial concluded that reduced capecitabine doses were associated with a lower incidence of treatment-related adverse events, specifically hand-foot syndrome, diarrhea, and stomatitis. Furthermore, time to disease progression and overall survival were similar, or even slightly longer, among patients who received lower vs. full-dose capecitabine in all of the studies reviewed. Together, these data support the practice of dose-reducing capecitabine, including the possibility of starting at a lower dose (<1250 mg/m 2 twice daily), to reduce the incidence of adverse events without compromising efficacy. clinical-breast-cancer.com/...

[Karen2235]

I think I am on a fairly low dose - 1000mg twice a day for two weeks and then a week off. I am not a big woman. I weigh 55kg (8 st 9 lb) and am 1,52m (5 ft). This is my first cycle so I am anxious about how well I will tolerate the side effects. Breathlessness when walking is major and general tiredness but other than that I feel okay. I so appreciate the replies you have sent me. It gives me the courage to carry on.

[BoneMetsAussie]

Hi Karen,I have been on Xeloda for about 6 months. My tumour markers have come down from about 300 to 100. I have very few side effects. I take 1500mg twice a day.

I have found it so much more tolerable than Ibrance/Letrozole/Zoladex. I still have a Zoladex shot and Xgeva.

I have lost my fingerprints and moisturise my hands daily, my feet when I remember and only a couple of times have my hands and feet been a bit sore but minimal. No mouth sores despite having mouth sores in Ibrance. I do get some very bad all over muscle pain torward the end of the cycle and the week off. It has gotten worse so I am hoping it is not just the medication failing. Otherwise Xeloda has been easy so far. Don’t stress!

[Karen2235]

Thank you so much for that information. I have just noticed that I think my fingerprints have also gone. I will take your advice about the moisturiser.