Breast Cancer Now Forum

Hi there,just a quick update.  I have done 8 cycles of trodelvy My last scan showed the c in my bones is stable but my liver mets have got slightly larger. I now have another scan on 14th Sept as regardless of the liver mets I have high calcium levels in my blood so needs investigating. Does anyone know what this means? Also it looks like I'll be changing treatment again soon, it does my head in.  Dont want to upset anyone by writing this as I was hoping trodelvy was going to work for me, as you do, it just lost me my hair. On a positive my onc still has options for me doso I cling on to those.   good luck everyone.karen x ... View more

Hi Diana   i sent you a private post a couple of weeks ago, did you get it ok? Not done that before. I am getting scan results next week so I'll let you know how I am doing. I am finding it really scared at the moment but hope this feeling will pass. X ... View more

Gosh, I've just read these posts and couldn't not comment. I am 9 years with SBC (21 years since primary though reoccurrences in between) . I have just started a Trodelvy. It is great to hear your experiences. I know we are all different....the cancer to... but it does give me hope for a few more years.   thank you   karen  ... View more

Hi Diana   i hope I don't add to your stresses by telling you my experience on Trodelvy. I also used the cold cap successfully on a year chemo (taxol then eribulin) I then started Trodelvy , no one could tell me if the cold cap. Wouldwork but I decided to give it a go as I'd been using it over a year. However on my week off , after my first cycle my hair fell out to the point I got my hair dresser to shave it off. I am now wearing a wig or some bandanas I got off Amazon. I must admit I didn't find it as traumatic when it happened to me on FEC 20 years ago. I think it's partly because I am older now (55) and also I was on palbo and that thinned my hair. I think I managed to detach myself mentally from it over these last few years. That said I am not saying it's easy. The only thing I am holding on to is is that it's the price to pay for the treatment working which I won't know until a scan in a couple of weeks when I know I'll be a complete stress ball. Anyhow, not sure if this helps other than to know I've had a similar experience.    Love    karen   ... View more

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