Breast Cancer Care Forum

Hi ramade I hope you get on well with Eribulin and that it works for you, I know you’ve had lots of other treatments so my fingers are crossed for you. A couple of things about Eribulin. I don’t take steroids at all for it so it's not essential to take them if you feel you don't want to.. I think some chemo units/ones prescribe them routinely but the SE s are not as significant as say the taxanes when you do really need to take them. You could try by lowering the dose until you either get to the point you don’t need them or just take a very small dose? Also hair loss tends to be hair thinning from my own experience and the ones written on here over  the years. I was on this in 2017 when my hair thinned about 50-75% but I do (did!) have very thick hair so I got away with wide, soft, hair bands rather than a full head cover. This time around (I’ve just had cycle 4) it has ‘dropped’ twice so I’m down to about 10% hair which is truly awful. I have again been disguising it’s thinness with the same headbands as I had and also, in the hot weather, caps and a sun hat. I was going to shave it all off but asked my adult daughters if I should (they would definitely tell me the truth!) and they said I should keep it as it is but keep disguising the lack of it. I call it my ‘illusion of hair’ as it’s so pathetic. In 2017 I found it did start regrowing though after a few cycles so maybe it will thicken up slightly? Other ladies have reported that it grows back as well, so I’m hopeful it will.   Good luck to you, and all other Eribulin ladies Nicky x ... View more

Hi Lily Congrats on becoming a grandma - yet again! My goodness, how many littlies  do you have now? Lovely for you though. Hope your daughter recovers quickly and an extra stay in hospital can help. A good friend of mine’s daughter lost a lot of blood after her delivery and they kept her in for about 3 days. Luckily the ward was very quiet so the midwives looked after baby at night so she caught up on sleep and during the day they were on hand to give her great breast feeding advice. My friend and I had said to her to stay in as long as possible! It is a lovely maternity unit and they live locally enough for her partner to be able to go back and forward to visit quite easily. Certainly helped with this baby as it’s her first. Both daughters are OK, thanks for asking. When YD had her bag stolen, with credit cards, the gang or person knew exactly  what they were doing as the cards were all used within minutes locally and used contactless up to the £30 limit in a number of shops. They buy cigarettes as they can’t be traced but can be sold. Credit card companies are on the look out for this type of behaviour on an account so all of them  had blocked the accounts by the 2nd time of use. Annoying still to get everything stopped and re issued. ED is looking for a new role! She’s had a couple of interviews come up that she was suggested for, ie she hasn’t been looking so far but other people recommended her for them. Funnily enough the person recommending her had just got the sack from the place of work and the roles weren’t quite right fir him so he suggested her. Depending what happens with them she will start looking properly if they don’t come off. And talking of vans I’d forgotten that our son in law had his works van stolen the other week. It is parked outside their home and they couldn’t understand why the alarm hadn’t gone off as it was late evening and they were in bed with the windows open. Anyway they live near a corner shop and they had a look at their  cctv. There was a gang of 3 men in balaclavas who pointed an electronic device at the van to disable the alarm! No wonder they didn’t hear anything. The gang just wanted the equipment in the van and luckily SIL hasn’t left any of his own things in it that night, quite often he does as he has some early shifts. The van had a tracker so they knew when it was stolen and where they went before parking up and ripping out the tracker! Nothing seems secure these days does it? Anyway, good luck to all in UK with this bad weather coming in, sounds like it could be pretty bad in places so lock everything down! Nicky xx ... View more

Hi RosieH From what I’ve  learnt on here and general internet searching over the years lung nodules can also be caused by things other than BC. I only say this as on and off over the years lung nodules have been mentioned to me but have never done anything despite me having SBC in bones and liver. In fact I nearly fell off my chair at my GPs once when I read a letter on the screen from my oncologist saying I had lung mets! They can be caused by a severe cough or cold etc. However you, and your oncology team are doing the right thing by getting them checked out. A watch and wait approach for 3 months is quite usual in these circumstances - but obviously worrying for you. It is worth the lung specialists having a look at the scans, they may have seen more examples of this and be able to make a more definite diagnosis. I’d say the nodules are probably too small to biopsy, and often a lung biopsy isn’t possible so other than a scan there isn’t much more they can do at this point. If you have tumour markers taken (from your blood samples) these might indicate and changes in tumour load so it could be worth asking about those but any small changes can also be caused by other things. Sorry this doesn’t help you much and maybe someone else can offer some other advice. Good luck with everything though, however this pans out. Nicky xx ... View more

Hi ladies Yes, I hope you’re not having problems with the rain Lisa. I know the dam in question isn’t anywhere near you but it looks like Northern England has had so much more rain than we have had in the South. OH and I had just fitted our new water butt to the downpipe of our garage at the weekend and  we had a days worth of rain earlier this week. From pretty much nothing in the butt it was nearly to the top in that one day, off quite a short run of guttering so it just goes to show how it can all collect so quickly and overfill rivers and reservoirs. And just to think a week beforehand we were all complaining about the record temperatures! Hows the weather in France Carole, unpredictable or just changeable? Hope YD is well on the mend, last thing she must need in the middle of the summer. Lily, hope your son is OK. Funnily enough our YD had her bag stolen at work the other week. Some opportunistic ******* came into the restaurant whilst they were prepping in the morning, asked them a question to distract them and nicked her bag - which they have always left in the restaurant itself rather than the kitchen. And the tiny kitchen looks into the restaurant so it wasn’t as if it was left completely unattended. It caused her a lot of hassle involving the police, many phone calls to banks and credit card companies and of course no cash or means of buying anything until new cards were issued. Therefore she couldn’t use public transport or buy anything. Luckily her phone was on her at the time so they didn’t get that and she was able to block and alert those companies immediately. Was your son robbed in a similar way or by someone actually at work - that would be worse I expect, for it to be someone he knew. We also have ED off work with stress at the moment! Sorry I never seem to relate these stories to you, I guess I don’t tend to put their woes on here but should share at times. Her boss is just the most unreasonable person possible and as she owns the company there is no way that will change any time soon. ED is also a very strong capable young woman and not one to be bothered usually by anyone like that but the atmosphere at work has been awful fo a long time so her Dr signed her off for 4 weeks as she said there was no point going back after a week as it wouldn’t help. Btw it’s not just ED who finds this boss so bad, staff turnover is really high and moral very low. Unfortunately this boss will be the death of her own brand which is stupid as they are doing so well. I read an article recently that was discussing psychopaths (it was to do with the scrip writing of Killing Eve) and whatever the percentage of the prison system are psychopaths the same percentage are CEOs of businesses!  So, I’ve been on my week of but rather than have toothache this time around I have had a lingering stomach complaint! Typical, just when I want an extra few days of feeling better I get this. I of course was concerned it might be directly to do with the big C and my brain went into overdrive but OH casually mentioned a few days in that he had also been feeling unwell and is gradually getting back to 100%. I said to him can he let me know if he’s not feeling great as it does then help me realise not everything I have is C related! Typical man not mentioning anything at all about feeling unwell unless it gets so bad they need to do something about it, grrrrrr. Thats all for now, a long post from me about various ups and downs. I will let you know how the wedding goes, I’m getting ED (who is professionally trained as a makeup ‘artist’) to do my makeup so I at least feel I’m less washed out than normal and how treatment is when it starts again next week. Nicky xx ps Lily, Poole is a small town but quite a history and the countryside around is great for beaches and walks so not a typical seaside town but a nice place to visit for a couple of days like we did xx ... View more

I agree, don't google time scales, the information is so out of date.  In fact when I had my secondary diagnosis in 2008 the stats were about 2 years, it just goes to show how out of date they were then as we are now in 2019 and I'm still here!.  At the time on the forum there were quite a few ladies who had also lived for many years (far more than 2) with secondary BC and that was before all the newer treatments had even become available. Basically we are all different and we all respond in different ways to our treatments so it is very difficult to compare timescales and even our own oncologists are only taking a guess if they are asked for a prognosis.  I personally have never asked, and never been given a prognosis or timescale and I'm happy to have kept it that way.  Every one is entitled if they do want to know of course. I hope this helps Nicky x ... View more

Hi I knew after I got the results of my 1st scan after starting treatment. So I'm guessing about 3 or 4 cycles of treatment but I can't remember now to be honest. I tend to have CT scan after about this many treatments throughout all the time I've had mets. Nicky x ... View more

Hi Jo I was on Capecitabine back in 2013 when my liver mets were first diagnosed. To be honest I found the first few cycles quite difficult and struggled a bit with side effects. However I did have a dose reduction of 20% very early on, to help me cope, and also my body seemed to adjust to this chemo and I coped overall very well for the 18 months I was then on it for. I did have a few breaks in the treatment to allow my hands to recover, I got a few splits in them at times, but overall I tolerated it well. I think most ladies do. As to work etc I did have to stop work but that was only because I was going into hospital environments and I was worried about my lowered immunity. Other ladies do carry on with work so it would depend how you feel and what you do. Fatigue can hit us all at times but I did feel quite OK on this chemo, as opposed to others I’ve had, so again, it will depend on how you tolerate Capecitabine. Basically though don’t suffer in silence, my oncologist told me they want to get the dose right so we do tolerate it for a long time,there’s no point trying to keep at a high dose and feel miserable. I stayed on a 80% dose for the rest of my time on it and it was effective for all that time. You asked about eating and you do need to have something before or with the tablets. I think you’d feel pretty rotten if you didn’t, and I think there’s a reason as well for not having them on an empty stomach. Maybe have a biscuit or two with a cup of tea in the morning, or a yogurt or something if you don’t usually have breakfast? Also you don’t need to be a strict 12 hours between doses, just make sure they are at least 8 hours apart, that way you don’t have to change all your eating habits! Nicky x ... View more

Hi Alex I do have liver mets, and have had them for over 6 years now but I haven’t had the back pain you are describing. I wanted to reply to your post though just so you know it’s not gone unnoticed. It’s often quieter on here at the weekend and also come the summer holidays a lot of the Mums on here are busy once the children are off school. If you are worried about this new pain maybe speak with your oncologist and see about an extra scan? I must admit until I knew my liver mets were responding to treatment my mind used to conjure up all sorts of aches and pains in my abdomen. None of which was anything at all and all seemed to miraculously disappear once I had a good scan result! Nicky x ... View more

Hi all Sorry for absence, no real reason just laziness I suppose as I don’t logon each day but I tend to read then forget to answer.  Hair is being a real pain and has nearly all fallen out which didn’t happen last time on this chemo. I know I used the cold cap but I also haven't  come across any fellow Eribulin ladies where it has become quite so thin so it’s quite unusual. I’m at the point of wanting to cut it right off, in fact shave it off then allow it to grow back as it tends to do during this chemo. However I can just about disguise it still with very wide hair bands and caps so I’ll make a decision soon. One reason to hold on to the little I have is that we have a wedding to go to in the next couple of weeks. Something I really could do without but it’s my best friends son. Anyway I have eventually found a suitable hat to wear with an outfit I wore last year when we went to France for a wedding. So the cost is very low and I’m confident that I will look good, a real worry when you know you don’t look your best and everyone else there will be (and they won’t be on chemo either!) The other thing that literally has been a pain is my tooth. It flared up again the last chemo cycle (I’m sure it’s down to when my immunity drops) and I’m waiting for this time. Nothing can be done just yet (due to bone strengtheners) and I’m waiting for a referral to the max-fax chap at the hospital. I’m doing my best to help my immune system but the little uggers seem to keep multiplying and causing the pain. Being on antibiotics is not what I want, especially on my week off chemo when I’d rather be feeling better and not dosed up. Other than that bloods are fine and chemo has been going ahead on planned dates (I’ll find out tomorrow after my early morning blood test whether they’re OK for this weeks dose) which makes it easier for us to try to plan a few nice treats which we hope to do taking advantage of the nice weather we’re having. We’re also due a heatwave next week Carole but luckily for us we’ve had a bit of rain and some cooler days rather than your continued drought and heat. Also the night temperatures have been cool enough to sleep although, again, next week looks a bit toasty at night. So that’s me up to date, Lily I’ll read your PM after and reply but maybe this has covered things? Btw when we went away the other weekend we went to Poole which hasn’t got a beach in the town, just a harbour although there’s lots of beaches just outside of the town itself. Carole, I hope your painful fingers are helped by the steroids but I know what you mean about not wanting to take them.  They are one of the reasons I didnt want a different chemo as you have to take steroids for it, this one I don’t need them. A bit of a juggling act with your diabetes from what you say as well as being on them anyway, I do hope it’s a low dose. Also fingers crossed for the chest X-rays, we all know what the worry is like. Lisa, enjoy Edinburgh, I didn’t realise it was going to be so hot up there, it must be a bit of a shock for everyone as quite often the heat doesn’t get there. Pace yourselves, find a nice park to sit in to keep cool, maybe a museum or something interesting that will be cooler. Lily, only 2 days to go, yippee, and then a nice few weeks off. Are you going away as you usually do or staying at home to wait for the new bump to arrive? Any other news form you of interest? How’s Mum, or darent I ask? And all the family? Hope all is well. GS is growing up fast and nearly 2. We looked after him on Friday whilst ED was at work but I’d only agreed as OH was at home as he is currently contracting at work so not working all 5 days of the week. He (GS not OH 😉) is such a chatterbox and loves learning new words. We do have to be careful what we say now as he would easily pick up anything we say, even if it wasn’t a bad word, maybe an inappropriate word. I was so tired from the chemo earlier in the week that I had a sleep when he had his - we both needed it!  Well, that’s my update, have a good week all, enjoy the sun but be careful, it’s looking hot 🥵🌞 Nicky x ... View more

Hi Linda Sorry to near that Tamoxifen only worked for a short time.  At least it gave you time off chemo which is always a good thing in my books!  I hope  Vinorelbine works well with little side effects.  I know there's not many of us who have had it or who are on it so, other than FF, I don't think there's much common knowledge to share.  Ramade, I'm sorry also that Cape has stopped working for you.  It's such a b*mmer when we don't get as long out of a treatment as we hope for.  I do hope a new plan is put in place for you asap. I'm currently back on Eribulin, which I last had in 2017, and seeing if it is working when I have  scan next month. It's certtainly working on my hair which is now very thin and straggly - not a good look and makes me want to shave it all off but I'm waiting to see if the 'fal'l is over before I do something hasty!  So far SEs have been OK except for the 1st cycle. And I keep getting a flare up of an old root canal toothache which isn't good but seems to be linked to when my WBC/neuts are at their low point.  Trying to get an appointment at the max-fax unit at the hospital to get some decisions about what to do bearing in mind the bone strengthening treatment and it's associated ONJ issue. Something i really could do without. Hi also to FF, hope you are continuing to do well on E/E. Nicky xx ... View more

Hi paris Good for you that you are now looking forward to your planned  break in Barcelona.  My view on scans and results has always been to live life to the full as what you don't know can't hurt you!  The scanxiety kicks in nearer the results time but I've found over the years I'm less worried about the actual scans themselves, after all it's just a picture.  Hopefully the holiday will distance you from the thoughts we all have when we're at home going about our usual routines and you will come back ready to face what happens next.  As to your daughter's graduation go and enjoy it.  I nearly missed my eldest daughter's graduation as I felt so bad at the time but I'm so glad I made myself go.  I know it will mean so much to you and her and again try to forget the hospital appointment until it's upon you. Nicky x ... View more

Hi paris We all know what you feel like, especially on this secondaries part of the forum. None of us ever expect our breast cancer to return and if it does we are all aware that it’s not good news. However there are many of us, me included, living with secondary breast cancer, especially bone mets, for many years. And I don’t just mean surviving with SBC but carrying on with life and still doing the things we have always done. There are many treatments available and a lot of those have become available since my SBC diagnosis in 2008. Statistics on the internet don’t seem to have been updated since 2008 so one bit of advice right now is don’t use Mr Google. Sites such as these give information and support without quoting outdated information about survival rates. As Anne has said, I think all of us felt more able to cope once we had a treatment plan in place and we know what we are dealing with. It is difficult and probably the worst time when waiting for scan results. We have called it ‘scanxiety’ on this forum- for obvious reasons. I would say try it to worry or think about it but that is nearly impossible, I remember that much only too well from when I was waiting for weeks for an actual diagnosis and treatment plan. Keep in touch and when you have a treatment plan it will almost decidedly be something that many of us have had so someone will be able to answer any questions you might have. There is a thread on here called ‘Bone mets please join in’ which you can join in with by replying to the last post on there, it’s not an obvious way to post a comment as you think you’re only replying to the last persons message but that’s the way the forum works! Any questions etc will be picked up by someone on there although you can also post on any other thread if it’s specific to the treatment plan you know you’ll be having.  Jule65, Good luck with your treatment plan as well, I don’t have any experience of brain mets and their treatment other than what I’ve read on here over the years so can’t offer any knowledge on them. Again, you can post on here for support and advice but there’s not always many ladies going through treatment of these mets at any one time so there may not be so many experiences that we can share or offer advice on. Good luck to both of you, it’s a horrible time and we do all understand what it’s like, we have all been through it and will all remember that awful feeling. Nicky x ... View more

Hi Dawn Sorry to hear that Eribulin is no longer working for you and that you've had such a tough time of everything.  Fingers crossed for Carboplatin. I'm posting on this thread as I am back on Eribulin after about 18 months off it.  I had 8 cycles back in 2017, this was the suggestion from a second opinion oncologist as my platelets were acting up and he felt I shouldn't have more than 8 cycles.  As it was my platelet count was absolutely fine during that time and Eribulin worked well on my liver mets getting rid of them all except one larger one, which it was shrinking.  I went onto hormonal treatment which also worked well, although the larger liver met started to grow again.  I then had surgery to remove it plus 2 tiny ones.  Everything was still stable after a year but in April this year an MRI showed I had some lesions in the liver again.  As I know Eribulin can be given for longer cycles (certainly more than 8) I asked to go back onto this once I knew the hormonal was no longer effective and also that Eribulin had still been effective at the end of the 8 cycles even though it had not got rid of all the lesions but they were still shrinking. So far I've had only one and a half cycles (the dose on day 8 of my first cycle didn't happen again due to low platelet count) and am due to start my 3rd cycle tomorrow.  My platelet count has now recovered well so I am slightly less stressed about it now!  I am having gcsf injections to boost my white blood cell count as last time I had Eribulin in 2017 my wbc and neuts hit the floor.  As in 2017 I have lost a lot of hair! I'd guess about 75% which leave me with some very straggly locks!  As before I'm wearing wide hair bands to cover my loss and hope that, as before, my hair starts to regrow whilst on the chemo.  Just waiting now for the eyebrows and eyelashes to fall out (as they did this before, unlike any other chemo I'd had), this was more annoying that the hair loss. Hope all of you still on this chemo are coping with the side effects and that it continues to work well for you, Nicky x ... View more

Hi to all, especially the newbies who find themselves here. I have been living well with secondaries for over 11 years now.  Initially in bones then in the liver.  The only time I tend to feel less well is when I'm on chemo, which is understandable! I have been able to continue living in the moment and enjoying life as much as the treatments allow me to.  Most of these 11 years I have been fine as I have alternated between hormonal treatments and chemo plus a bit of surgery thrown in for good measure!  Initially I continued working part time, even on chemo, but now don't work through choice and the difficulty with continuing with my then job.  I do get more fatigued now but that's to do with current chemo and also no doubt age plays a part in that. In my 11 years I have seen my 2 daughters go through secondary school, university, new careers, one wedding and also a grandson, things I never thought I'd be here for. My motto has been Carpe Diem - seize the day I hope you continue to feel well. Nicky x ... View more

Hi Walsh I've replied to your question on another thread but I just wanted to add that the reason you often go from a hormonal treatment to a chemo treatment can be when some mets are not responding well to hormonal treatment.  Chemo tends to give a more rapid response (after all it's a much tougher regime) and can get things under control quicker. It doesn't mean this rules out having hormonal treatment in future, it will all depend on how you respond to different treatments. Nicky x ... View more

Hi Walsh In reply to your question I'm no expert, I've just learnt (and made myself learn) about the treatments along the way.  Because I've had so many different ones in my 11 years of mets I guess I've researched quite a bit! I think you should ask your oncologist why they are suggesting a certain type of chemo as opposed to an oral one.  The one thing I do remember though is that some chemo's are not prescribed unless you have had a previous type beforehand.  This I think is due to the trial conditions when the drugs are first tested out.  This is the case of Eribulin which can't be prescribed unless you've had at least one (different) type of chemo beforehand (or this was the case when I had it back in 2017).  I have a feeling this might also be the case with Capecitabine but, again, criteria may have changed since I had it back in 2013.  Having said that it doesn't mean it wouldn't be an option at some point.  I know this might not help that much but that's one of the things I have been aware of when I have had different treatments especially chemo's.  I've also learnt that not all oncologists go down a particular route regarding treatment, some choose one type of chemo over another which can be based on their own observations.  As we, as patients, aren't all exactly the same it's not surprising that we don't all follow the same treatment plan. As I said earlier though I would ask your oncologist and they should be able to explain why they have chosen a particular treatment and you should tell them your worries, hopefully they can help you with them. Good luck Nicky x ... View more

Hi ladies Poor you Carole, having such a long spell of hot weather. I know what it was like in France last year and when we got home. Lots of sleepless nights and no energy to do much.  I hope it breaks for you soon. We have intermittent good weather and clouds but also no rain, even when its been forecast. Luckily our garden is quite small now, unlike the last house, so I can use a watering can and do several (lots in fact) trips from the tap and back in the evening to keep things watered.  I use it as my exercise rather than a hose, but don't have too far to walk each time otherwise it would be the hose.  At the moment its not too hot at night, although has been, so I try to trap the cool air in the morning and then open the windows later on when it cools down.  Doesnt always work though.  However as our house is a converted bard it has very thick wall so it does keep quite cool in the day with no really direct sunlight getting in the bedrooms as it's positioned so it's not south facing.  Our bedroom gets the brunt of it though when the sun is setting so I shut that up with blackout blinds until its gone down. Can't complain, its quite nice weather and not too hot. I must say that my fatigue has been quite bad though on this chemo this time around, I didn't notice it as much in 2017, maybe its age as well! I just have to pace myself.  I have had the complete dose this cycle and managed to get a repeat of a tooth ache that I had.  It's all to do with a root canal and has been very painful.  Back on antibiotics which make you feel grotty as well so not a happy bunny.  I need to get the hospital dentist involved as I'm on bone strengtheners so theres all sorts of things I'm having to sort out at the moment and all things I could do without. However as it was (and still is) my week off chemo OH and I had a short break this weekend down in Poole.  The weather was lovely and even just a night away and a bit of sea air did wonders for us. No real agenda, just using up a voucher that ED had given us for Christmas so it was nice and cheap as well, all the boxes ticked. Hope you are all OK.  I expect it must be end of term time soon Lily, bet you can't wait to get away for a bit and spend time with the family. Bye for now Nicky xx ... View more

Hi all and particularly to  dogsdinner who asked about calcium flakes in her bones. To be honest I’ve never heard of that and I’m not sure any of our oncologists give us all the information so maybe some of us have them as well! This might be a time to check it out on the internet to see what it means, if you think you want to know (it can be a scary place as we all know) or ask your oncologist next time you are there! Sorry to hear you are feeling the burden of yet another, different, condition added to your existing SBC. It’s very difficult to cope with one condition let alone two. I had heart failure for several years (caused by chemo) and it got worse and worse. Trying to speak to specialists about both life affecting conditions was a nightmare. They are great (or should be great, some aren’t as I found out to my detriment) in their own field but really don’t understand the other specialists field. It drove me to the brink of depression even without having had any before so I understand why you are seeking help in this area now. I hope you find the right person to help you on all counts. Nicky x ... View more

Hi imac55 I remember your log in name from when you first started posting! I also remember how I felt when after nearly 5 years on hormonal treatment for my bone mets a CT scan showed I now had liver mets. It was at a point in my treatment (anastrozole) where my oncologist was even questioning that I had bone mets as they had not changed for so long and were tiny, he thought it was possible it was another degenerative bone disease. Hmmm, wishful thinking for us both. I was definitely in the mindset that I had beaten this thing as life was pretty normal and had been for such a long time after my initial treatment for secondaries. It really threw me into mild depression to be honest (I also had to cope with knowing that I couldn’t start the treatment I should have had as my heart failure was too bad, but that’s another story). However I did start on Capecitabine and that does often appear to be the next step from a hormonal treatment for us longer term SBC ladies. I got 18 months of this treatment and that can be longer as has already been said. Once I could see it was working, from Ct scans etc, it gave me faith in the treatment and also adjusted my view to the fact that my disease would progress at some point. Having had years of ‘stable’ and ‘no change’ it was such a shock when you hear it’s not! I have carried on doing exactly what I would have been doing, although did have to give up the new job I’d started as it involved visits to hospitals etc which I was worried about my immune system being compromised. I have continued to travel, have fun, enjoy life and I don’t feel that it has held me back and made me more dependent on any one although I am also aware that things can change. The fact you have had a similar length of time on hormonal treatment as I had seems to point to your mets being slow growing ie not aggressive, like mine are, so hopefully you will get long periods of stability on whatever treatment you are one. I have tended to alternate between hormone treatments and chemo over the past 11 years which is what my oncology team have settled on so it’s not all been about long visits to the hospital. I’d say grab your chance at this sailing experience, it will help you adjust to a change in treatment and come back with hopefully a positive way of facing what is the next change in treatment. I’d say you wouldn’t necessarily stop Denosumab , I haven’t at any point of any organ progression, so you’ll probably still have that. Once you are on a regime that involves a hospital or oncology visit every 3 weeks eg Capecitabine to pick up your tablets you may find your Denosumab routine changes to fit in with that ie every 6 weeks instead of 4, or even less than that as a lot of us now seem to be on longer gaps between injections. Enjoy the sailing, how fantastic 😊 Nicky x ... View more

Hi to all 😊 Sorry to all ‘newbies’ who find themselves in the place they never wanted to be but we are a supportive and knowledgeable bunch. This thread was very active at one point but now swings from active to nothing being posted but will always get a reply from someone as it’s such a long running thread and most of us have bone mets. Firstly katzygirl. Having looked up the drugs, including the branded name (which I didn’t know) that have been mentioned by your onc it seems you will be on hormonal treatment (Fulvestrant) together with the newer Abemaclibib and a bone strengthener. This seems fairly normal if you are hormone positive, HER2 negative. The Fulvestrant element is given in the buttocks every 4 weeks and Denosumab can be given at the same time (as a subcutaneous injection) either 4 weekly or sapaced further apart. I haven’t had the newer drug as I didn’t fit the criteria ie I’ve had too many previous treatments so can’t comment on that but I think there’s a thread on here somewhere about it, maybe have a look out in the SBC treatments section?  As with all drugs given they are systemic so they will work on all mets found (the brain being the exception) but if further scans show any organ involvement the oncologist may want to put you in chemo. Also if you have bone mets that are weakening your spine too much you may need surgery or a blast of rads to target that area. Hope this info helps. Hi to grumpy as well. I bet you really are grumpy now you have mets, and no wonder, we all are! As to your question about fatigue I think we all react differently to the treatments we are on however cancer fatigue has been mentioned to me in the past. I’m not sure if it’s just side effects or psychological but the impact of being told you have mets is incredibly draining emotionally and physically. However once your body adjusts to the new onslaught of drugs you may find your energy picks up, it’s still great to be walking 3 miles a day although I appreciate it’s not your usual 5-10 miles. If you find it’s a real problem maybe speak to your BCN (if you’re lucky enough to have one, you’ll find specialist SBC BCNs are few and far between) or seek out extra help with these questions. This website may help as there are meetings and events for SBC ladies around the country and some deal with this fatigue problem. Sorry I can’t be of more help with this but also make sure you’re listening to your body, if it’s telling you to take it a bit easier maybe you do need to, even if it’s temporary. Nicky x   ... View more