Breast Cancer Now Forum

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

Hi, I haven't posted for ages as I have not been well as had a virus. I just want to add how I incensed I am at being called an unsurvivor. How insulting that is to all of us living with SBC and doing our best to live normal lives. I too would like an explanation of why this title was chosen for us as whoever made that decision does not have a clue what living with this is like. sorry for the rant but this has left me fuming. We have to live with enough without this insensitivity. Kaz x ... View more

Oooops should have said six months rather than four.... so a two month reprieve..... I blame that on my post scan fuzzy head!!!xxx ... View more

Hi Di   That's good to hear......sounds similar to what I experienced.   I had positive news with my scan. The cancer's stable and next scan in four months rather than six. It may sound dramatic but I feel I have got my life back (for a little longer anyway....Touchwood and all that).    Take care xxx ... View more

Hi   My hair thinned after a few months on palbociclib/faslodex. I also use Nioxin shampoo and conditioner (I've got it from TK Max) After 8 months of thinning it started coming back and has now thickened up again not to my original thickness but enough that I don't stress about it anymore. I am not sure if this is down to the Nioxin but I am continuing to use it just in case or whether my body has got used to palbo... who knows. Also my GP nurse said the thinning may have been made worse by me sitting in the sun too much without a hat on,.......which I did do last year (more fool me) during the long summer days we had.    I am still on that combo but am now going into angst mode as have scans in next couple of weeks.    Best wishes to you all. We are amazing having to cope with all that this secondary roller coaster ride throws at us.xxx ... View more

Hi Sarah   I had my first scan just after my third treatment. I don't want to speak to soon but my hair seems to have stayed the same over the last few weeks . I have been using nioxin which is what Nicky from this site suggested.    With regard to markers, my onc says they're only a guide and the main thing is, as Annie said, what the scans say. I did use to obsess a bit over them when I was first diagnosed with SBC and it has taken me really until this last year or so to realise that that's adding to the stress of living with it. I now only ask for my marker just before I have a scan. Still not sure if that's the right thing to do but so far it has helped.    Xxx   ... View more

Hi, I have just had my thirteenth cycle this week. My bloods (neutrophils) have been slightly lower than normal from the start of this treatment but have remained level enough for me to keep having the drug. I have felt fine so far...touchwood. The side effect I have had which has affected me the most (mentally) is hair thinning. I have now just about got used to this. I have had two stable scans on this and have another in November so fingers crossed. xxx ... View more

Hi.....I hope my answer will help you but with many of the questions we need answers too nobody can tell us as they don't know. (Even though I still continue to ask.....).    I had primary in 2000. Was prescribed tamoxifen for 5 years but (after discussing with my ONC) stopped after 2 as wanted to try for family. That didn't happen but I didn't start back on it again. I was diagnosed with local recurrence (DCIS) in 2008 and 2009 then secondaries in 2013.    I dont regret the the decision I made as I made it for the right reason.    The only advice I can offer is to go with your gut feeling and that I have taken both tamoxifen and then anastrazole for three years when first diagnosed with secondaries and tolerated them both well with just hot sweats as side effects.   I so hope I am saying the right thing here and haven't confused you even more.   xxx   ... View more

Hi Deb   Thanks for your reply. Hopefully that's the case for me and things will calm down. I know at the moment I am over thinking it and am doing my best to stop. Hopefully as you say it will be thinning rather than loss. I just wanted to know what I am up against so I can get a plan to deal with it and stop stressing out.   We are amazing how we all cope with this. Living with this disease is bad enough without all the extra crxp that goes with it. I just wish other people got this but I don't think that ever really happens until (unfortunately) you have to live this way.   Having said that I consider myself lucky as I have lots of support with family, friends and work so this helps me to get on and live a normal(what's normal??!!) life around the scan times.   Take care xxxx     ... View more

Hi Nicky, Bon and Mermaid   Thank you so much for responding to my post and so sorry it has taken so long to get back to you.   I just freaked out over the whole thing and it took me back to 17 years ago when I lost my hair through chemo.  It has been stressing me out over the last few weeks.....the.'... is it getting worse or not scenario'. I was constantly checking my scalp in the mirror (in work and out shopping) but have managed to stop that. I think I have been in denial (a good place sometimes) thinking it was to do with my age and prolonged exposure to the sun during this lovely summer as my practice nurse suggested. I think I just wanted to believe her. I had my hair cut short with a diff colour last weds but it is still thinning. I am on palbociclib and it does say it is a common side effect so I am not sure what my head was thinking when it did start to happen....I swear I rechecked the side effects.I think it was because a started the drug last Oct so I must have thought that would have happened before now.   Anyway, I am gradually getting my head in a better place. I have an appointment at a cancer hair loss place on Weds. What I need to know now is whether it will continue to fall out or will I be left with a full covering....though loads thinner than it was. Hopefully then my current emotional roller coaster will stop for a while. I know this is a small price to pay if the drug works. Hope your treatments are going well. And once again thank you for replying I wasn't ignoring you ....my head was in a spin 😊 X ... View more