I am so sorry to hear about all the difficult things you have had to endure throughout your cancer journey and the loss of your mum! I can't even begin to imagine how the additional devastating and traumatic change of having your mobility taken from you feels on top of all that, but I wanted to reach out and send a hug xxx
It sounds like despite everything you are going through, you managed to keep pushing for what you felt was right and had some great support around you. I am so glad to hear that you did regain some sensation.
I recently saw a post on Facebook by a lady who said she'd gone from being in a wheelchair to regaining her mobility over a long period of time and then done a 7km walk! Incredible. The facebook group is called Secondary Breast Cancer, if you're interested.
Its a sobering reality that becoming physically disabled can happen with this disease and I was so glad you posted because this had been on my mind. I'd recently had a conversation with my boyfriend about what we'll do if I lose my mobility. I also have extensive mets in my spine and now the Onc thinks I also have osteoporosis in my spine as a complication so the prospect of possibly having to use a wheelchair at some point was heavily on my mind.
In answer to your question about Denosumab (I was on the exact same medication regime as you), its a medication to strengthen your bones to prevent fractures and pain from the cancer. Its not actually an anti-cancer drug which would stop mets (as far as I understand it myself). Here's the link from MacMillan which explains it https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/denosumab
If you are worried about it, I think it would be worth asking if perhaps District Nurses could visit you at home to give the Denosumab injection. Or at least asking your hospital if you can keep up with the Denosumab and find an alternative location to have it. I have kept having all my treatment throughout Covid but I think primarily its because my local hospital doesn't have a Covid ward.
Hope you are doing ok, that you keep getting great support from your team and make further progress with getting more sensation and mobility back! Keep that positive attitude as it will help (I liked it when you said you can't weight bear "yet" - sign of a determined soul) 🤗 xxx
Thank you very much Nicky. Due to Covid I was offered Denosumab instead of Zometa at the end of March / early April but at the time I thought I would have to miss two dozes of Zometa so in the end I didn't switch. Apparently it is too late now.
Best wishes Xx
I only joined this forum last night but already find a lot of the conversations calming and helpful.
I was diagnosed at the end of Oct 2019 with metastatic breast cancer with spine, liver, rib and collarbone mets. I was 37, same age as when my mum was diagnosed, she died at age 39. Unfortunately due to the erosion of my T9 and T11 in my spine i am now wheelchair bound. I ended up completely paralysed and was an inpatient at St Barts in London for nearly 5 months. The neurosurgeons wouldn't operate on my spine as they didn't believe i would regain any sensations or movement. Thankfully after some great support from my OT and physio at the hospital i slowly started getting some movement and sensations back. I can now transfer into a wheelchair, lift my legs up, get dressed by myself, go to the toilet etc. I can't bear weight on them (yet!) and still have pins & needles but i look forward to just continuing with physio to see how much i can get back.
I had some radiotherapy to my spine and i'm on Zoladex, Letrozole, Denosumab and Palbociclib however they've stopped all denosumab injections at my hospital whilst this covid situation is going on so i'm worried what effect this will have on my bone mets. Has anyone else had their denosumab stopped? I'm wondering if it's up to each hospital what they do but i'm considering whether to try to get the injection privately until they restart them at my hospital in Bristol. Would appreciate anyone who has any thoughts or experienced similar issue with getting this injection recently.
Also, i'm finding it difficult to find other patients who have become wheelchair bound due to spinal compression cause by mets. I feel like i am not only coming to terms with this devastating diagnosis but also coming to terms with being wheelchair bound. I have found websites and instagram users who are wheelchair bound who provide great inspiration and tips however i feel my case differs somewhat due to having the cancer diagnosis alongside the disability. They all talk about how you just have to give it time and things will become easier, be patient etc.. .but as you ladies can appreciate, when you are faced with this diagnosis you don't have the luxury of having time on your side. Hard to explain but in short (seeing as i have already written an essay!) I would find it really beneficial if i could connect with others who have had similar experience of becoming wheelchair bound due to spinal mets. So if anybody has any advice or links i would really welcome them!
Hope you are all keeping well.x
I started off on pamidronate, an IV bisphosphonate but switched to a tablet form once my chemo finished as I didn’t want to go to hospital just for the bone strengthening treatment. These were quite difficult to deal with due to certain restrictions regards taking them but they kept me away from hospital as I was on a hormone treatment that didn’t require regular visits. Fast forward 5 years and I had progression in my bones so I was changed to Denosumab and have been on it ever since, some 7 years. In all that time my bones have remained stable even if other mets have changed. For me, having experienced the other 2 types of bone strengtheners, it has been by far the easiest to have and tolerate. I started on 4 weekly, as was the usual dose but have since moved to 6 weekly and now 12 weekly which suits me. I do notice more bone aches, particularly in my spine, if it goes longer than that but I’m sure it depends on each person what suits them best.
I hope this info helps.
Can I ask you about Denosumab - I understand for you it works much better than other bone strengthener? What was the previous one? I am on monthly Zometa but am thinking to ask about switching to quarterly Denosumab mostly for the convenience purposes but started thinking maybe it would also be better for me.
Also, like other Ladies I find your post really contributing and inspiring. Thank you.
Stay safe Everyone!
lovely to hear from you. Glad you are keeping well. I’m doing as well as can be. The Abemaciclib that I take causes a lot of tummy issues for me but apart from that it’s ok and keeping me stable.
Nicky thanks for your thoughts, I think I will meet my oncologist halfway and ask for one at 4 months, it makes me too nervous with Liver mets to go 6 months without a scan. My tumour markers are no good as they always read as normal, and I have no symptoms from the liver mets so a CT scan is the only way to know what’s happening.
Stay well everybody xxx
Hi thank you so much for your kind reply. I'm much better today. I've been suffering a little from fulvestant jabs. I had them on Friday and although they can be painful I'm usually ok the next day. But this time its taken til today to feel better. Then ofcourse everything feels worse. I miss my granddaughter like crazy and still no sign of that changing any time soon.
However, today is another day, more positive and feeling better.
Thank you. I agree this forum is so special and so needed.
Take care, stay safe, stay strong. 💕
I wanted to send you a virtual hug xx Its so horrible having to deal with all that this entails. I totally hear what you are saying about feeling emotional and scared, and not wanting to overload your husband - I battle with this daily at the moment as well! If you ever want to reach out, please feel free to DM me anytime 🤗 I really do find that once I start speaking to other people in similar boats, I feel much calmer, more positive and more reassured that I'm not alone dealing with all of this. Hence why this forum is such a blessing, especially in the lockdown...more grateful than words can say! I hope you are having a better day today xxx
Hi ladies I just wanted to say I've been reading all your comments and feel calmer for it. Nicky you are a constant inspiration especially for me with liver mets. I was diagnosed with secondaries in October, Halloween to be exact. I'm on Ribociclib and fulvestant. I try to live each day at a time and stay positive but in the last week I've felt emotional and scared. My last scan showed my liver and lung (yes there's some there too) are static. So I should feel positive but I think the isolation is kicking in. I miss my daughter's and my 3yr old granddaughter. My husband is fantastic but I try not to worry him with my fears. So thank you ladies. For sharing and caring. Stay safe. Jen xx
Nicky - as ever, thanks for your amazing response 🤗 It has inspired me to also try and help others more now by sharing what I learn as it feels so good to both give and receive doesn't it? I will take time to re-read and digest your thoughts properly as I often find reflecting on things when not in the midst of an emotional and mental "dip" is much better for bringing more positive thinking. I really hear what you are saying about taking control of my treatment plan, I really love that idea and I feel like so far, I've just been cruising on the cancer boat with the Oncolgist holding the rudder...but now I feel like I want to drive things myself and really challenge and question things!
Mermaid and RedRidinghood - thanks as well for sharing your thoughts! It brings so much comfort to hear other people sharing the same anxieties, fears, ups and downs over the years. The scans are the worst and I think I am now coming to appreciate the "scanxiety" does have very real effects on me.
I totally agree that the Covid-19 situation is utterly bizarre in terms of what some hospitals and cancer centres are doing. I totally appreciate that down in London they needed to be extra careful especially, I have an auntie who lives down there and works in public services, she felt the impact of it all, it was pretty scary to hear what she was having to deal with.
I was chatting to my chemo nurse about a month ago about it as well, as I live up in Lancashire and I was surprised that I was still having to attend hospital to collect meds and get my Denosumab, when District Nurses were already making home visits to me to give the Zoladex and take bloods. My chemo nurse shared that she said it seemed like nobody knew what to do and there was no proper direction, she was aware many hospitals were shutting down cancer services where they could but in Lancashire they had just decided to carry on with precautions (as Redridinghood has said)! They hadn't stopped hardly anyone's chemo or cancer treatment up here apparently and I've been to hospital appointments twice in the past month - one of which was a hospital with a Covid-19 ward. It was definitely eerie, I wasn't sure what to make of it all.
I was also surprised when I saw my Onc last Thursday that she said if I chose to start Capecitbane I could actually get on it as soon as my next chemo appointment, which is Wednesday next week. This also surprised me given how nationally we still haven't gotten a proper handle on the virus situation and yet here is Boris talking about easing lockdown as of Monday!! I agree with one of the comments on here (I think it was yours Nicky) about actually feeling safer in lockdown because most people were isolating like we had to anyway.
Anyway, I ramble now so I'd best go and do something before I start getting on my soapbox haha! Thanks again ladies xxxx
In answer to your question mermaid I agree about the levels of radioactivity our bodies are exposed to with CT scans but, for me, I’d prefer to find out early if progression is happening so I have, over the years, decided to have them at regular 3 monthly intervals. This really only came about after my liver, and more extensive bone mets, we’re found in 2013. For 5 years, after bone mets were first diagnosed, I had been completely stable so the scans had gone from 3 to 6 to 12 monthly and a level of complacency had crept in for both me and my then oncologist. When I did request a CT scan, after having a few aches and pains in my leg it showed up extensive bone mets (which could have been prevented from getting that bad if I’d had a CT earlier) and liver mets (which would have come along anyway in my opinion). My oncologist was more shocked than I was that I now had extensive mets so if we all went on the usual advice of ‘ do you feel well’ etc it wouldn’t have helped as I’ve been pretty much asymptomatic all these years.
Its up to each individual how comfortable they are with their scan intervals so I can’t suggest anything in particular, I only recount what I might have done differently or what I found out works for me.
I’m currently on chemo and coping OK with these difficult times. Our unit has moved off site so now we have treatment in a private hospital which keeps us away from the coronavirus hot spot of the local general hospital! I started the chemo just as the self isolating came into force so I decided to continue with it as life outside was suddenly safer as everyone was in a similar position being indoors! The low immunity does worry me but at the moment I’m not mixing anywhere so I’m not exposed to anything so moving onto a less immunosuppressive regime would be better but we will see how this treatment progresses before any changes are made. Overall services are going ahead with CTs also being done at another private hospital so we are quite lucky in our area. I hope everyone else is getting the treatment they need.
Mermaid, I just want to agree with you how good it is to see Nicky on here, giving her wonderful and informed advice as usual. Thank you for all your help over the years, Nicky. I just hope you are doing ok with this covid shutdown on our treatments.
and of course it’s good to see you too, mermaid! You must be getting on reasonably with your treatments. You sound well. And feeling well too I hope. That’s so important.
I too worry about the frequency of scans. Mine, over my 6 secondary years, have usually been 3 monthly. I had one or two 6 monthly in the 31/2 years on letrozole when I was rock solid stable. My next should be in June but of course that’s up in the air because of coronavirus. It has been described as merely ‘routine’ but my routine scans have shown up my liver progression, my pulmonary embolism and my kidney involvement requiring a stent. Routine scans can show up problems early, but right now so many treatments and diagnostic procedures are being put aside so the nhs can cope with this virus. My hospital is now eerily empty, with nurses having time for to prepare tik toc dance videos! I don’t blame them but it is no good having underused hospitals. They can be made safe in this viral time, taking some ideas from the supermarkets.......controlled entry with no unnecessary companions, mandatory hand gel use, no cafes for lingering, wiping down arm rests regularly, even attended lifts so no button pressing with managed use of lifts. Back to the future! I remember as a child that lifts always had attendants in department stores! Strange solutions for strange times.
Enough. Please take care everyone! It is still good for me to visit here occasionally to realise I am not alone.
Hi Nicky, I haven’t been on here for a while but lovely to see how much you still contribute to the forum and that you are keeping well.
I am currently on Abemaciclib and Faslodex just had CT results which showed liver mets stable. Oncologist wants me to have another CT in 6 months. I note you ensure you have them every 3 months. Onc says he has to weigh it up against putting too much Radioactive stuff into my system with more regular CT scans. What do you think about that? I would appreciate your thoughts.
Hi Gillyflower and thank you so much for the compliments! I try to give back as much info as I find out so it helps others. I learnt so much from this forum when I joined in 2008 from ladies who are sadly no longer with us who also shared their knowledge. I was a lost cause back then and didn't know a thing! I also try to post relevant stuff on the open part of the forum so it gets shared but do send PMs of more personal details to ladies i'm in contact with.
As to swapping between chemo and hormone I'm not sure why and when it started but 'in the old days' ie pre the 'ciclib' drugs and extra treatments that go alongside hormone treatments all oncologists seemed to do it. Basically whack it with a large dose of chemo and then move back onto the kinder hormone treatments for stability until they no longer were effective when it was back onto chemo. This is obviously only to do with hormone positive, HER2- BC. Nowadays it has changed as the newer drugs are out there and the oncologists seem to want to hold back on chemo for as long as possible.
I have also pushed for any investigations I think are relevant and have so far had 3 liver biopsies. However overall they haven't really changed my treatments other than giving some false positives when HER2 receptors were raised with one of the biopsies so I had Herceptin. Turns out (in hindsight) it was so weakly positive there was no benefit in having the herceptin. I have been lucky to have a hospital, and various oncologists who have listened to me and put up with me challenging them over the years. We have one of the best liver surgeons in the country based where I have treatment which is why I've been able to have all the biopsies and also a liver resection - they seem happy to have a few guinea pigs to practice on! I also had an excellent oncologist who went over and above to sort out a referral to the cardio-oncology unit at The Brompton in London. Without his referral and the work they have done I honestly wouldnt be here.
I generally have scans every 3 months and the only time that differed was when I had been stable for many years with bone mets and missed a few months and my bone mets went mad in that time. I now make sure they are 3 monthly even though I'd rather not have them.
My main thing has been to research my particular BC and not worry about everyone else's as we are all different. I have also learnt over the years how my BC grows etc and reacts so have a good understanding of how a treatment should work (although it doesn't mean it will). And basically challenge anything I'm not happy with and get a second opinion if necessary. I am not at a major teaching or research hospital so have to go to The Marsden if I need to find out what comes next. I also like to know what does come next so I'm ready to hit the ground running when a treatment stops being effective.
There has been research that people taking control of their treatment of cancer and presumably other long term conditions have a better outcome - which I didn't know when I started out, I just did what was right for me. And that's the final thing - look after Number 1 - no-one else is going to!
Thank you so much for your detailed and thoughtful reply. I have to say that you have been an absolute rock of inspiration and hope on this forum, as although I haven't had the chance to post regularly, I often come across information or posts you've responded to. I hope you know what an enormous difference you are making in people's lives - I think I even went on the Cancer Research UK website and found an old post where a member there had redirected another person here purely to read your posts! 🤗
Do you mind if I ask you a question about your med swaps over the years, particularly how your Oncologist knew / decided when to swap you from chemo back to hormone therapy? I have been wondering if it is possible to go from taking oral chemo like Capecitabine and reverting back to hormone therapy and will ask my Oncologist about this, particularly as they can never guarantee the cancer type hasn't changed. Though I have researched enough to understand that its so complex the science isn't even sure and of course nobody wants to take risks. Did you ever have to ask or push for having biopsies or request more than 3 monthly scans? I think I feel a bit neglected by my Oncology team at times and I am trying to figure out what I need to push them to do.
Thanks again for your really helpful info - hope you are enjoying this lovely weather outside today! xxx
Sorry to hear you have progression but to be honest it happens to all of us at some point with this awful disease it’s getting your head around what is happening and what new treatment is being suggested that throws us into yet another panic spiral.
Hormone treatments do fail over time and it depends on how your body reacts to them as to how long they are effective for. It sounds like the progression has been caught early so, as you’ve said, it seems advisable to accept your oncologists suggestion if changing to a new type of treatment. Over the 12 years I’ve had bone, and subsequently liver, mets I have swapped between hormone and chemo treatments and these have given months, if not years of stability in between the changes. Capecitabine is a very effective chemo with fewer side effects than many of the IV chemo treatments. Obviously all treatments come with SEs but I found with capecitabine they were manageable and a dose reduction was always available should they get a bit more of an issue. Capecitabine also seems to work well on soft tissue mets and can be used for many years, not just a few months. In fact a long time ago on the forum one lady, sadly no longer with us, was on Capecitabine for nearly 9 years!
As to the surgery I hope that can be sorted out and your spine protected. The Capecitabine, should you start it, should also treat the mets there as well and the Denosumab is no doubt working its magic already. Since I’ve been in Denosumab ( about 6 years now after previously been on other bone strengtheners) my bone mets have been stable all the time even though the liver mets have changed.
I hope this info helps you and you get some more replies with other experiences from other ladies who’ve either had Capecitabine or been in a similar situation.
I had a few questions for anyone living with bone and liver mets. I'm 39 years old, ER+, PR- and HER2 negative. Bone mets were found in my spine 12 months after I finished FEC-T chemo, mastectomy and radiotherapy. I was originally on Tamoxifen until the mets were discovered. I was then swapped to Zoladex, Letrozole, Denosumab and Palbociclib in Jan / Feb this year. I already had one collapsed verterbra in my spine which required surgery back in January, followed by radiotherapy to that section of my spine in March.
I've just had my 3 month CT scan follow up and the results weren't as good as I hoped. The Palbociclib had apparently worked really well for the bone mets, however two other of my vertebra are now starting to collapse due to damage already done (apparently my bones turn spongy). So I might need more surgery or procedures done to shore those up and reduce the risk of spinal cord compression. Waiting on Neurology for an opinion.
The CT scan also showed 3 new "unidentified" lesions on my liver, which I'm told are currently only very tiny. I have a complex liver as its been suspected for a while I have poly-cystic liver disease and have always had cysts, lumps and bumps on it. So now the radiologists have to try and work out which ones are benign and which ones might be mets!
My Onc told me that the original radiologist didn't comment on whether or not mets were suspected in my report, just had the new lesions down as "unidentified". Onc asked another radiologist who specialises in breast cancer to have a look. He has apparently told her that he is "99% certain" that the new specks will be liver mets.
So my Onc has given me a really difficult choice to make. I can either carry on with the current medication regime, have an MRI scan to double-check the liver and see where things are at in another 3 months' time. Or I can stop the Palbociclib and Letrozole and go onto Capecitabine. My Onc suggested her opinion would be to swap to Cape now but that ultimately its my choice.
Aside from not even being sure I can have an MRI due to metalwork in my spine, I decided that it wasn't worth taking the risk with the "unidentified lesions" (as that's how I got into this situation in the first place. My Onc decided to not worry about the previous "unidentified lesion" on my spine at the point of finishing my FEC-T for my primary last January and it turned out almost 12 months later that this was indeed mets).
So I am due to start Cape next week and wondering what on earth comes next, as Onc has said Cape works differently for everyone, some women need to switch again within 6 months, others can be on it for a year or more. I'm so disappointed the Palbo didn't work as I was tolerating it so well.
I wondered if anyone had any suggestions for me in terms of what questions I should be asking my Onc next. The thing I am most anxious about is what happens if the Cape doesn't work. My Onc has gone through the whole talk with me of "you'll be on it as long as it works or until toxicity levels become too much" and has also suggested I consider early retirement if I can't work from home on a permanent basis.
I feel like I'm back at the beginning with all of this and I can't get my head around it. I would love to hear from others who have followed a similar treatment path, as I have read lots of stories on here and am so grateful to all of you who share your journeys. It gives me so much hope. I'm trying not to despair but as I'm sure many of you have also experienced, sometimes the fear gets the better of you!
Lots of love and hugs to all going through this - this forum is really one of the few places that cheers me up no end when things get a bit gloomy xxx