Anyone out there age 75 or older who is on Capecitabine (xeloda) for mets after ribociclib/ Abemaciclib/ fulvestrant no longer working ?
It’s looking like I will be offered Capecitabine soon or stop treatment but the thought of any side effects more than I have on my current treatment (pretty minimal other than fatigue ) is more than I think I can manage . I was told originally with primary cancer chemo effects would be worse at my age . I actually never did chemo originally, because my prognosis was poor, regardless whether I did it or not.
Of course, no two people are the same, so nobody can really say how it’s going to be for anybody else. I am seriously contemplating stopping treatment, enjoying a time of freedom from side effects and appointments, even if only for two or three months. A brave decision if I do but I probably wouldn’t be the only one.
I sometimes think that because the oncologists offer you second third fourth line treatment, they just like you to go on and on, but of course every decision is down to the individual patient.
Hi @Gillmary I noticed your post and that, as yet, you haven’t had a response - I’m guessing that the group you are hoping to hear from on the forum is probably quite small but I do hope that someone will be along soon to help you think through this difficult decision.
Whilst I am 68, I am not being treated for mets but I have worked in a small capacity in palliative care in the past where conversations were had about stopping treatment. Who do you have with whom you can discuss this, if you are considering declining the next line of treatment? I am aware that often family and friends are not the best people for this situation as they are too emotionally invested and may not be able to understand one considering stopping treatment
Would it be helpful to speak to one of the Breast Cancer Now nurses on 0808 800 6000 who will be able to discuss your situation with you? They may also be able to put you in to contact with someone similar through the Someone Like Me programme. Does the hospital you attend for treatment have a Maggie’s centre or MacMillan centre that you could go in to for a confidential chat?
I think it is a common viewpoint amongst many older contributors to the forum is that oncologists’ focus is completely on treatment and prolonging life come what may and that the individual’s wishes for quality of life over quantity is disregarded or misunderstood. It can be difficult to advocate for oneself in this situation particularly when one is tired. Age UK provide advocacy services which can be accessed by calling 0800 678 1602.
I so wish I could do something more to help you Gill other than throwing phone numbers at you but I do hope you speak to someone who can. Try the BC Now nurses, they are always a good place to start when you have something on your mind. I am sending you lots of love and hope your way forward becomes clear soon.
Thank you so much for this lovely post. My family are supportive of whatever I choose but the problem is I’m so indecisive . I am under the hospice, although I’m not sure as yet who I could talk to there… I may be able to see a GP at my surgery who actually works part-time at the surgery and part-time amazingly at the hospice I’m under… I think I will ring the breast care nurses and also perhaps talk to the MacMillan people. I nearly didn’t take treatment in the first place, but I’m finding it harder to contemplate stopping then had I not even started in the first place. However, I have now got through nine months since diagnosis and I’m not doing badly but it does look as if they are feeling current treatment may not be working so ethically they have to offer sonething they think gives more survival but my aim is quality not quantity, although that’s very easy to say because we all cling to life.
Thanks again .
Yes @Gillmary they will keep trying every available treatment, that is their mission. Whether you want to accept it and throw everything at it or choose a less invasive path only you can decide. This is a big decision and you really need a bit of counselling I think, to be able to talk through how you feel about each of your options. Perhaps the hospice has someone in palliative care who can help. MacMillan do have a programme of four free counselling sessions by phone which would be very helpful although there is a bit of a waiting list (weeks rather than months). Definitely call Breast Cancer Now nurses, you will feel better when you do. I’m so pleased that your family is supportive and you’re not facing this alone. If you can, let us know what you decide to do.
Hi there Gillmary,
I managed 27 cycles on Cape and loved it. My only problem was HFS alleviated by CCS Foot Cream and then 1 per cent topical Diclofenic.
I was 72 when I was on it
Best Wishes for whatever you decide.
Regards,
Macgilly
I’m not your age, but had progression after ribociclib +letrozole, and now on Capecitabine as well.
I can just say for me capecitabine it is way easier.
First 2/3 cycle was tired, nausea, HFS, etc…, but after that, nothing anymore! And it started working too!
Only think it is to remind to don’t eat too much food with a lot of folate because can give HFS.
Anyways you choose, i wish you good luck
I also needed a reduction, i started at 3500 mg a day and now I am to 3000 mg, and I feel better. I also read many studies that state it is actually better a lower dose, less toxic and more effective (or a 7/7 regiment rather than 14/7)
Hi Gillmary
I haven’t looked at the forum for quite a while so I hope I am not too late responding to your question. I am 75 and have been taking Capecitabine for around 21 months. Like you I was taking one of the new wonder drugs, in my case Palbociclib plus an aromatise inhibitor. These stopped working after 18 months and, like you, I was rather reluctant to start taking Capecitabine. However it has been very effective for me with minimal side effects and, as it’s a tablet, it’s easy to take at home. A common side effect is hand foot syndrome but this can be managed with good moisturising creams. I do hope you give it a go. Other than some problems with my feet, which haven’t stopped me going on country walks, I’ve found it manageable even at the age of 75
Best wishes
Pam
Thank you Pam - I appreciate your post . No you are not too late . I thought I would have to make the decision this last Monday, but my oncologist has pushed it forward for a month while I wait for an MRI scan. My tumour marker has been steadily rising for seven months, but the last CT scan said stable so they need an MRI to try and see where the progression is.
I am pretty certain I will give Cape a go particularly if I am allowed a lowish dose . I think my worst concern is diarrhoea, but I guess perhaps it can be managed and until I try I won’t know. I think I always assume the worst and perhaps I shouldn’t! Thank you for your encouragement.
Hi, I’m 62 and just found I’ve had progression after almost 2 years on ribociclib and fulvestant which I tolerated really well. Capecitabine has been recommended as next line of treatment, bloods taken yesterday to make sure it’s suitable for me, all being well I’ll start in 2 weeks time. I’m feeling so apprehensive and it’s very reassuring to see some positive stories, there’s still so much I still want to do
I hope it goes well for you . I too am apprehensive. I think I will be allowed one more cycle of Ribo and fulvestrant next week as oncologist wants MRI result before changing my treatment sometime after the 17thJune . My blood tumour marjer have been going up for six months, but she can’t get the radiological evidence of where the progression is . I find it very scary changing from drugs which I have managed pretty well on in terms of side effects but one has to try . All the best . It’s nice to know of others out there facing the same challenges .
Yes it’s the unknown again isn’t it, I hope you get some answers - it took a good 18 months to identify my mets, I have lobular which is very sneaky and hard to see.
Good luck with your treatment, fingers crossed we’ve still got lots of living to do xxx