Breast Cancer Now Forum

Hi Blondie Thank you so much for posting. It is great to hear you have done 18 years. I am currently 8 years post SBC diagnosis and sometimes think I must be running on borrowed time. I am glad you've accessed the treatments you've needed and wish you all the best for the future.   thanks again for posting it gives us hope.   karen x ... View more

Hi Alijess, thanks for posting this. I had a tooth out at a covid centre at the first lockdown and it still hasn't heeled properly. I too am seeing a maxillary facial surgeon at my local hospital every three months. He told me to book in with a hygienist every three months which I have done. I have had the dead bone shaved by the surgeon and it was a success and he said my tooth is just healing slowly but I will be prone to infections.  I last saw him in October and have since had a course of antibiotics from my own dentist as I have had further infections. I am paranoid I will lose other teeth. I still think I have an infection now but am leaving it until 29th Dec when I am due to see the surgeon at my local hospital again. I do feel he knows more than my dentist but the hospital told me to go to my dentist last time I had an infection as it would be quicker for me. i have just started on cape, was worried about side effects but to be honest my tooth issues are worse than any side effects I have had so far.  It is good to know things can be 'sorted' albeit over time. I just wish it wasn't  so long winded. I have been on denusonab monthly for 8 years. It was stopped for awhile when I had my initial tooth issues.  just thought I would tell others about my experience.. Karen x       ... View more

Hi Sondra and gillyflower, in answer to your question, as far as I remember my menopausal symptoms were the same on zolodex as they were when I had my ovaries removed. Like you both that was the main thing I worried about before I made the decision (I was 49 and had been on zolodex 2 years) as I didn't want to make my life worse by having the op. The only thing I would say is I was offered low dose citalopram which can help with hot flushes. I did get hot flushes and an awful 'funny' feeling just as I was about to have one. I decided I didn't want to take citalopram. However, fast forward 6 years,  as I have moved on in my SBC journey and i am now on 10 mgs of citalopram daily for mild anxiety (I put that down to living with SBC for so long..8 years) i don't get any hot flushes at all . With hindsight I definitely would have taken it when it was first suggested to me. Sorry for all the waffle but I hope this helps. karen x ... View more

Hi peachy, I had my ovaries removed for the same reasons as  you a few years ago and have never looked back or regretted it. If you search under oophorectomy on this site you can find what I posted and the helpful replies from when I was deliberating about this in 2015.  I had keyhole surgery so have no scars and the recovery was quick Or at least I can't remember it being an issue. Hope me this helps.Karen x ... View more

Thanks Gail for asking those questions as that's what I'd like to know too. I was on palbo for three years before starting cape. Hopefully someone will reply soon.   karen x ... View more

Hi Gillyflower, I am two weeks in on cape and so far so good. I am due to start my next round of tablets on a Tuesday so this is my week off. The only issues I've had is a salty taste in my mouth and I have definitely felt more tired. I do feel that's a small price to pay.I am doing lots of walking and moisturising my hands and feet regulary. I am hoping doing these things will help me to keep going on this treatment. The main thing is that it works which I won't know until I have a scan in a few weeks. I am choosing not to think about that now and managing to function as normal (lockdown permitting). It is good to hear that you are finding it manageable after 8 or 9 cycles especially as I am on my first.  I too would be interested in knowing how long this drug has worked for other people. Right, I am off now for another walk. That's definitely the best way to clear my head. (And believe me I have tried loads of things over the years of having SBC!!) Take care love karen x ... View more

Hi Gillyflower, thank you for your post. Sorry for the long delay in replying. I am starting capecitebine tomorrow and will let you know how I get on. I have had a bit of a delay and have not been on any treatment for a few weeks so have made the most of living 'normally' for a while., Thanks for your positive comments on your experience with cape. Hopefully I will get along with it too. The main thing being that it works of course.  I am trying to get more walking in at the moment to strengthen my body (that's my theory) and just so hoping I can continue to do things like that.  I too am wfh and that's def been good for me up until now. ..just to make me feel normal. I hope things are going well for you. Xxx   ... View more

That's great news Ann, long may it continue for you. Thank you for posting that positive news. I too am about to start on cape next week.   karen xx ... View more

Hi Ladies, I too have had recent spread to my liver and was feeling guilty about having a glass of my favourite tipple red wine. I have asked my onc and my Macmillan nurse and they hav both told me it's ok to have alcohol so I am going with that. My nurse told me to stop feeling guilty as I have enough to deal with and that I still have to have a life and do what I enjoy.   so cheers!!xx ... View more

Hi Angela   thanks so much for your reply. That's good to hear. I hope you are doing well with your current treatment.x ... View more

hi Gillyflower, I have recently been told that palbocilib has stopped working for me and I am now going on to Capecitabine. its good to hear your tolerating this well. Do you do anything different since changing to this i.e. Diet / hand and foot creams. I am hoping I will feel well enough to continue working part time (from home) and enjoying a glass or two of red 😀 .   i think I became a bit complacent on palbo as i was lucky as it did me three years but now I have been punched in the face again by this awful disease.   karen x ... View more

Hi Amp47   Justbwant to add my story to your last message and the advice your oncology nurse gave you. Hopefully that will help others in the same position as us.   I wish I had been told the same. I have been on anti depressants since March and I feel so much better. I realise now that I should have been on them sooner and when I thought I was coping mentally I wasn't (hind sight and all that). Anyhow my main message is that my last MRI showed my SBC in bones stable but it also showed I'd had a small stroke in my frontal right lobe. I am now on medication for this (including citalopram) and have taken it as a warning sign to listen to my body more going forward. I consider myself sooo luck that I have not had any long lasting physical effects from this. I have taken up yoga too and am trying to be kind to myself more and put myself first which everyone was always telling me to do especially since my secondary diagnosis.   I hope my lesson learned can help anyone else out there struggling mentally with their diagnosis and also with what's happening in the wider world at the moment   Lots of lovexxx ... View more

Just bumped this up too ... View more

Hi, I am on fulvestrant and ibrance and denusonab I have just started taking citalopram 20mg after having a long bout of anxiety. I also have councelling at my local hospice which helps me. I 'resisted' offers of anti depressants previously but, after living with SBC for 7 years, I recently realised I haven't been coping as well as I thought I was. I feel totally myself again on them( though am not working at the moment as I've been told by work to stay at home. ).   I hope this helps.x ... View more

Hi true2wish   i am just coming up to my 7th year with bone secondaries (touch wood as I have scans in the next fortnight).  The only book I have found helpful to me is The Cancer Whisperer by Sophie Sabbage. (Who lives with stage4 lung cancer). I have mentioned this before on a different thread. I just found it changed the way I think about living with this. I have only read it once but keep meaning to read it again to see if my opinion is still the same. I think it's worth the read and would be interested to know ifyou find it helpful.    Hope this helps ... View more

Hi cazzy   i am probably not putting this very well but Sophie herself has lived with stage 4 lung cancer for a few years and it's about her attitude to the diagnosis and I can honestly say it has helped change my mindset. You can access her on Facebook I believe (I am not on there myself) but I did google her before I bought the book and there are clips of her talking about how she deals with things even that helped me when my first went wobbly. Her book certainly boosted me and made me see things differently. personally a lot of things she has said have resonated with me. I really hope I am not over selling this but I have found it more useful than any other material I have read since having SBC. Her blog is sophiesabbage.com/blog. I haven't actually looked at that as am an internet novice .       Love   kaz ... View more

Apologies..it's me again. Can I just add a recommendation for a book I have recently read and have found very useful especially during my low moods when I try to change my mindset to a more positive one. Sorry if it's been mentioned before. It's the cancer whisperer by Sophie Sabbage.   its well worth a read and I am not on commission!!!    Xxx ... View more

Thank you AnnieJ and Cazzy to for your responses. Sorry but I am a bit rubbish with this site as wasn't able to reread your replies when I responded to Nicky. I do appreciate your comments as it helps me knowing that someone out there took time to reply and I am not alone.    Wishing you you both all the best.xxx ... View more

Hi nicky   Thank you so much for your honest response. You have certainly been through the mill with this...to say the lest. I am blaming my mental issues on the fact I had a virus recently which caused me to become anxious and I too was thinking I was heading to the end of my journey so really scared myself. It is good to hear that you have managed to turn your thoughts around. I have a scan in January which I hope will alleviate all the current angst I have stored up. I am constantly looking for ways to get back to my normal self . I think that is probably added to my problems. However, on the positive side it has led to me having more honest conversation with my partner who I know I have tried to shield from this. I feel lucky he has stuck by me all this time since my first diagnoses with primary 19 years ago. This disease is awful as it gets at you in so many ways. I have constantly tried to have my normal life in one lane and the cancer life running alongside meeting up occasionally. Perhaps this hasn't been the best way to go although I have had counselling and been told I have learnt this behaviour over the 19 years.   once again, thank you for your response. I am not sure if my reply makes sense but having just read your message wanted to reply straight away as it has encouraged me. I now try to live day to day as mindfulness seems a good option.   Here's to all us strong ladies dealing with this. Especially at this time of year when it's all about Christmas.    Love    karen         ... View more

Hi Jan, thank you so much for your useful response. I will discuss it with my gp nurse next time I see her. I really don't want to create more issues s/e for myself which is what is worrying me.    Nicky I would be interested to know how you've coped over the years, if you don't mind me asking. I have valued your comments over the years I have dealt with SBC. Thank you.   best wishes   karen ... View more