Hi Lesley - thank you, I try to give back as much information and support that I have received over the years.
I have had bone mets for over 7 years now and was probably in the same state you Mum finds herself in when I had my diagnosis in May 2008. It's a very lonely time as you tend not to know anyone else who us going through the same thing and believe me no one really understands unless they are experiencing it themselves. That's where this forum has been so good, you can talk with women going through the same fear, treatments and medical issues that you, or your Mum, are going through. I have found out so many things from sharing information than I would ever have had either through my chemo team or the general Internet. So thank you everyone!
Im sure your Mum will be the same as most of us and will feel more able to cope once she has a treatment plan in place. I think it gives all if us a sense of control and that something us being done whereas whilst scans etc are being done and results being waited for we can't do a thing and our minds go into overdrive.
Id imagine your Mum will have some form of bone strengthen, probably denosumab as that's the one mist commonly prescribed for new patients and then, depending on her BC type she will have either chemo of hormonal treatment but her team will advise on that. If she is in pain with her bone mets she may also have a short course of rads to the area, not a long course that you have with a primary.
Hope this helps and feel free to ask away, I'll do my best to help although I am off in holiday soon so may not respond as quickly as usual.
Take care yourself as I'm sure your Mum appreciates your help, as I do with my two adult daughters.
ps edited due to some weird and wonderful typing auto corrections which did not make sense at all once I'd read it back!
Hi all, thanks for your replies. We can always find good advice and inspiriation on forums so look forward to getting to know everyone. It's good to know there are others out there that understand and can help due their own experience (although I wish no one had to be here!) and hopefully I will be able to help in my own way too. Lots of love, Vicky xxx
I love reading your posts, u always have loads of extra info for us!! I know me and mum are just at the begining of this hellish struggle but already my mum is worried that the Drs and Oncs will give up when the going gets tough! Any words of wisdom?
Thank yous again, soooo helpful and supportive!
i know you have been supporting your Mum all this time so it must be a shock to you as well if she seems so unwell. I don't know what treatment other than denosumab she was on so can't comment on her going onto Cape other than I did similar 2 years ago. I had my bone mets for nearly 5 years, being held at bay with hormone treatment, when I got an ache down one leg. Eventually after several X-rays and then a CT it was found that my mets had spread to my liver. Because I had read on here about receptor status changing I insisted on a biopsy which showed that I was now HER2+, having been HER2- for nearly 10 years since my primary. So, a couple of things for you to ask/check. Has your Mum had a biopsy done of her mouth ulcer to establish that it actually is secondary BC? And, if so, has her receptor status changed in any way as this will affect what the best treatment is for her. I'm not sure why they have stopped denosumab, are they going to try her on another bone strengthener? I hope that the rads to her bones work as well as for her as it has for other ladies who have had it and have mentioned it on here. I understand there can be a flare up of pain just after but then it should get less. Cape is a very good chemo, it worked for my liver mets for about 18 months and probably would have done for longer if I'd had Herceptin with it, as I should have done but couldn't because of the condition of my heart function at that time.
hope all goes well and she picks up strength soon.
ps welcome to any newbies on here, please ask any questions you may have, one of us is usually able to help and we all give support and advice. X
Glad you found us and pleased you and your Mum have found some hope here. It is a terrible shock and takes time to get used to the idea and find a new normal but it will come.
I had my primary bc in 1999 and was just letting myself believe I'd seen the last of it when wham! in 2010 I got my Secondary dx. I have bone mets in hips, sacrum,spine,ribs....so over five years and remaining stable on hormones and bone juice - take heart, life can go on after such a rotten dx.
I wish you both the best, keep popping on and ask anything you want to and we'll do our best to answer.
Hi ladies, hope you're all keeping well. Not posted much lately so thought I'd better just jump on and say hello.
Hello to the newbies, Carolyn and Leslie and anyone else I may have forgotten, sorry you have had to join us but welcome to the forum hope you both get answers and treatment plans in place soon.
Take care ladies Hugs Janette xxxx
Thank you for all your replies. I had my bone scan this week and waiting for the results.It seems to take ages what with having to hang around after the injection for 2 hours.
Tomorrow Im having just one radiotherapy blast on my hip as palliactive care to help with the pain. ( I remember having 20 when I had the primary in 2004 ) so one Im not too worried about. I have a crack in the pelvis and my oncologist said that the Letrozole should start killing off the cells and it will repair itself but in the meantime I have to see a Orthapaedic Specialist next week so not sure what option I have there.
It would be nice to be able to walk and drive again as I cant do much at the moment and I have always loved shopping (boo hoo) and need to start my Xmas shopping !!
Loving the Calcium tablets daily ( adcal I think) - one of the nicer treatments !!! Been to hospital every day this week for something and just as I thought I had a day off today - had to go to Doctors for a blood test as my white cells are high and he wants to monitor me.
I must say that the NHS here in Exeter, Devon are marvellous and nothing seems to much trouble.
Still keep thinking Ive in the middle of a bad dream - 11 years clear of BC and all this back now takes some getting used to,
Thank you Lynnq and everyone else for the positive and inspiring stories!
Yes im a daughter ha ha!!
Hello Lesley and welcome. You will find lots of help and encouragement here. Your mum is lucky to have a supportive daughter. (assume you're a daughter - my brother is a Leslie -different spelling for boys??)
The waiting game is not nice, but things will get better once she has a treatment plan.
Glad to hear that you're inspired and not going to give in......
Im new to all this but thank goodness i stumbled across this forum while researching for my mum. Shes just diagnosed yesterday with met on hip bone and very very afraid and disillusioned. Reading your advice and stories has already helped a lot.
We are playing the waiting game as we see what path the Onc is going to take tho emergency Radiotherapy has been applied for.
Thanks again for all the inspiration to not just give in.
I have been on letrozole 6 weeks now and so far no se's I had my hair cut very short when I thought I was going down the chemo route but that changed when bone mets were found. so far no thinning and I had mine recoloured 3 weeks ago with no ill efects
How did your bone scan go not as bad as you thought it would be. I have one on Thursday we are trying to think what we will do for 3 hours after they inject the dye.
As regards to your hair I never stopped having my hair coloured and streaked while on letrozole or my last chemo drug which was Everolimus. I will know which chemo I will be on tomorrow hopefully it will be Capecitabine another tablet chemo. I will have to see whether my hair can take this one but if I need to use a wig at least wouldn't need to spend so much doing my hair in a morning.
Best wishes xxx
Hi Carolyn, just to say wishing you all the best with your treatment. I have been on Letrozole for 4 months now, as of yet no hair thinning and I do have my hair coloured. We are all different and respond to treatments differently so good luck Marie xxx
Thank you ladies so much for replying and I appreciate your comments. Im off for the bone scan now and feeling terrified as Im such a wimp.
Going to start taking my Letrozole tomorrow and the calcium tablets after the scan as I cant cope with more than one thing in a day !!!
I took Arimidex with no problems so am I assuming that Letrozole is very similar?
Decided to get my hair cut short too as the tablets can cause hair thinning and so I dont think I will risk highlights and bleach but go grey naturally !!!!
I'm sorry your results meant yoi had to join us afterall. It is scary at first but once treatment is underway you do feel a bit more in control. I was dx with bone mets in March 2010 and have been on Letrozole since then, it has done a good job keeping me stable. You might get hot flushes or ching joints, they are the most common SE's, but we are all different. I have the AdCal too, it's a big tablet and quite chalky when chewed but they usually like us to take it to help keep our calcium leels even, they will check bloods eachmonth. I'm on Zometa rather than Denosumab bu they are similar. I find I get a bit more tired and achy just before and after treatment but otherwise it's ok. Good luck.
Sorry you've joined us too, you've had a bit of a time havent you. Hope they get rads sorted quickly for you. I had them initially as tumour was encroaching spinal column. I then had another couple of blasts for pain, it can be very effective. I wish you luck and will see you on the FB site too xx
Hi Vixviking ,
So sorry you have joined us. Well dx Autumn 2013with bc /sbc. . Mets in spine , rib, hip etc. Oh my goodness , I thought that was it. The pain in my back was awful. I had spinal cord compression. After 4 rads I was pain free, well almost I use to get an 'ache ' in the evening.
Neurosurgeon is holding off back op as not in pain at the moment.
Rads worked for me , my team were brilliant at targeting it just where I needed it. Good luck with your treatment . Marie xxx
i am having trouble with the computer and i had to send my post on small phone which is hard sorry for any mistakes x
Hiya ladies. I posted here a few weeks ago and I now need to join this very elite club. My CT Scan shows bone mets to the hip, pelvis but until I get a full bone scan tomorrow - wont know the full extent, I have to take Letrozole as from today and calcium tablets and radiotherapy is being planned for later this week. I then have to have an injection of Denosumab( XGEVA) monthly but not until I get a full check up from my dentist as apparently it causes teeth problems and mine are 63 years old and not in the best of health,
I would welcome any comments about side effects and other tips as Im feeling petrified of things at the moment and I know that you all will be going through these things and be old hands at dealing with side effects etc.
Thank you ladies in anticipation of your comments.
Sirry you have to join us on here but you have come to the right place for advice. The forum can be a bit quiet over the weekend so there may be more help etc and support soon. I have bone mets in my spine but luckily haven't suffered any particular pain or had rads or surgery to prevent collapse. However some ladies on here have so I hope that they come along soon to share their knowledge. Good luck with the next scan and I hope it doesn't show any major issues that can't be resolved quickly. Come back on here at any time for support and advice, some of us, like me, aren't on FB so can only be in touch through here.
take care and hope you find out what the treatment plan is quickly.
Hi all, just popping in to introduce myself. I'm sort of a newbie/oldie...I used to be on the BCC forums when I had my primary diagnosis 9 years ago, but after trying to move on I left. I couldn't remember my original login so have had to start over!
So here's my attempt at compressing my story...original dx was June 2006 at the age of 31, tiny 4mm invasive stage 1, grade 1, node neg, ER/PR+ and 4mm DCIS.
In 2008 and 2010 I was lucky enough to welcome my children to the world so they have been keeping me very busy since then.
January 2015 I developed lower back pain and an MRI in March showed bulging lumbar discs. Pain continued to get very severe and my quality of life was affected which was really tough with young children. This also coincided with my annual breast MRI scan in April which highlighted a suspicious lymph node which biopsied as a recurrence of cancer ER/PR+ 8/8. After a thorax CT and a bone scan in June 2015, at the age of 40 I was diagnosed with mets in my spine and ribs and was immediately started on Zoladex, Anastrozole and Denosumab.
2 weeks ago I had an MRI on my spine to check on the degeneration (this was around 30 minutes long as opposed to the 10 minute one I had earlier in the year). Last Tuesday I went for my 4 weekly consultation and treatment and was told that unlike the previous one, this MRI has actually shown the damage caused by the cancer which is 4 large areas in my spine and it's looking quite different from the bone scan results so they will be discussing in an MDTM and need a radiologist to confirm whether they think there has been progression or whether the MRI is just a far more detailed scan result. As a result of this scan I am now being referred for radiotherapy to strengthen my spine as they are concerned that my vertebrae are about to collapse and crush my spinal cord. Due to the concerns, they have also referred me for another thorax CT to check organs.
So this is where I am at the moment...in limbo, wondering if treatment is working, wondering if I'll see my children grow up, wondering what the hell just happened.
I have found some great advice, info and positive stories from a facebook group for secondaries, but thought I’d pop on over here and say Hi.
i too was dx with SBC at the end of Aug. It is in my bones including,scarily , my skull. I have numbness and tingling in my face but the pain has been really bad today, I have just been lying on the bed all day. I am taking gabapentin and my gp has said to take 2 cocodamol 4 times a day. I am due to start rads in next week or two, but, like you, I'm really scared that I will have to live with this pain. I'm trying to stay positive but sometimes, it just all gets too much, doesn't it? I hope you soon get a ct scan and can get some treatment. I hate the thought of all these drugs but if they help, I suppose we must go along with it. I hope things improve for you soon
love Anne x
So sorry you have had to join us in the secondaries part of the forum but there is plenty of support, experience and knowledge amongst us. The 'bone mets' thread tends to be where a lot of us hang out, as you can see from the number of posts it gets and isn't just for ladies with bone mets. If you have a specific question sometimes a new thread is the place to ask as it will stand out from the general chit chat etc on established posts. However if you post about bone mets here then someone is bound to be along to help.
We all understand how devastating a SBC diagnosis is, we've all been there whether it wasa week ago or, like me, 7 years ago. It takes a while to learn to cope and getting a treatment plan in place seems to be the starting point for that to happen for many of us. Luckily I have not had any pain from my extensive bone mets over the years but many ladies have and I'm sure someone will be along to help with pain mets and also treatment options. Quite likely you will have some rads to the area but this isn't like the rads for primary, it tends to be about 5 quick blasts over the same number of days. Pain can increase before it gets better but, again I hope someone who has experience of this can help as I'm only repeating what has been written on here about it. You also will get a bone strengtheners and this often really helps quite quickly with pain. Most of us are on the latest treatment called denosumab which is a 4 weekly injection and very little side effects for most of us. It could be you need other treatment as well such as hormonal, herceptin or chemo but your oncology team will know what is best and the most effective for your type of BC.
Do come back and so any questions, you are not alone on here. I have found it a great source of information, support and a few giggles along the way and is definitely a great way of communicating with people like you whereas in the 'real' world not many people understand about secondaries unfortunately.
Hi Carolyn and everyone else on this furum. It sounds as if I'm in a similar posiiton to you, except that my original BC was only in 2012. I developed back pain back at the end of August this summer and was sure it was a knot that I just couldn't shift. Spent a fortune on all sorts of holistic stuff, then mentioned to my GP that perhaps I should have a bone scan. And guess what? Yes, on Monday my oncologist said that it has come back in my bones, not sure exactly where in my back yet as am waiting for a CT scan. I am still reeling with shock and my back is so, so sore now. I am taking Co-Codamol and diazepam at night to help me sleep, but I am really scared that I'll have to live with this pain for the rest of my life ( however shortened that is going to be!) I'm a bit freaked out by all the talk of rads and various drug combinations, because it is so horrible to be thrown back into this stuff again. You all sound so strong and seem to be coping well; I'm just not sure I have the strength to go there again. Does that sound pathetic? Just don't know where to turn at the moment.
thank you for your kind reassuring post. I had not thought of phoning the helpline but I will tomorrow if I still feel the same. I think I'm over tired and overthinking things! Your right I am doing well and need to keep this in mind. You sound a brave lady and I hope you continue to do well. Welcome to the site (sorry for my moany post previously) lol. It really does help to come on here and read all the inspiring stories from such strong ladies. Good luck Anne and thank you x
Hi Marie and Chocs, hope you are both well and still misbehaving. I'm posting more in treatments at the mo as I'm on Eribulin, well have just started it and it's very generous with it's side effects but hopefully it will be a good chemo, it's one of the expensive cancer drug fund list. Expect the quads terrorised the neighbourhood last night it being trick or treat. Love Belinda. X
I'm sorry you're feeling so down and worried. I know what it's like, I'm a huge worrier as well. Have you tried ringing the helpline? I spoke to a lovely knowledgeable lady the other week and she really helped to calm me down. I don't know why your blood results would be in red but I'm sure if there was anything not right you would have been told about it. It sounds like everything else is going well for you, try to focus on that if you can.
I'm new to this site, SBC in bones including skull base which is causing facial paralysis, pain and a tingling sensation down the side of my face. That doesn't last long but it's pretty scary! I'm on gabapentin, steroids and due to start rads in next couple of weeks which will help the symptoms, hopefully.
i hope your onc. can give you some good news and in the meantime do try the helpline. I know it's horrible when your feeling scared and miserable but it will pass. Maybe see your GP if you're really struggling with it.
look after yourself
with love, Anne
Hi everyone. I'm sorry for this post but I'm feeling blue today, well since Friday really. Just feel rubbish and weepy. I'm achy most days but I don't like moaning cos I'm so grateful to be still here. I'm seeing my onc in a couple of weeks so will ask him what I can do about these aches in my knees and finger joints mainly. Also get a tingly feeling under my arms but no lumps felt I told my onc about these before but he said they were nothing to worry about. Also I've been worrying as when I was last in hospital for my H&P I saw some of my blood results on the nurses iPad were in red type and of course I'm now worried about that, although my last bloods were fine and TMs in normal range. I am the original scaredy cat and I don't want to ask what the red typed ones were in case it's not good but on the other hand I just worry. Sorry all for this moany post.
Hoping your all doing well.
Hi Marie - I saw your post and was curious about how quickly the rads helped with the pain. I had radiotherapy 2 years ago on T9,T10 and T11 as they were worried about compression. The rads did cause some tumour flare for a couple of weeks and I got tingling and stuff in my feet but then it was great for a couple of years. My last scan showed more spread in different parts of the spine and I had more rads a couple of weeks ago on my sacrum joint - but it has really made me ill this time. And the pain has become unbearable - nothing seems to touch it.did that happen to you?
Emerald, good news about your markers being down. No scans till January means you can relax and hopefully enjoy the festive season coming up.
janette, I'm pleased you've managed to swap brands and really hope that this one is kinder to you. Hope you enjoy your few days away.
hello to all the other ladies and new ladies, sorry you've had to join us but what a fantastic bunch of ladies we are.
Belinda - how are you - how are things.
my onc seems to look at CT scan and tumour markers the ones he looks at for me are CEA and CA125 I get the impression I will be scanned every 3 months but I am still very new to this so still a bit in the dark
Hope you all are doing well
Welcome to all newbies, so very sorry you are joining us. My advice would be, stick to the main cancer websites there is a lot of rubbish and out of date info out there. Be kind to yourself, we all have bad days , we are human , not machines. There are lots of very wise ladies here , who can point you in the right direction.
Belinda, just want to say I'm thinking of you , your knowledge and support has helped me so much .
Now , I'm off to the cafe , I like the bonfire , Bears is putting all our bad news letters on it , can't wait to put a match to it .
Love , hugs and positive vibes to all
Thanks for the info, Marirose. I'm so sorry that your last scan wasn't good but at least it's just the one tumour that's grown, it must be very worrying for you. The worst thing is waiting for decisions to be made and wondering what's going to happen next. This is a whole new world for me and it's not much fun is it? Hope your new plan is in place soon and you get some positive results. Take care, love Anne x x
Janette have a great weekend in Bowness think the weather is supposed to be fairly good.
Anne I don't have tumour markers my onc relies on the ct scans to see whether the tumours have grown she says I could have the blood test but it's not always conclusive anyway they have seen mine grown the main tumour on chest wall has gone from 16mm to 27mm so that was the last scan from 2 week ago. Which means a new plan will be in place in 2 weeks time but the good side all other mets are stable. Sometimes some of the abrieviations confuse me so it takes time to work them out.
Love to all newbies and my old cyber mets mates xxx
hope you're all well, and hello to FF in USA. Are any of you doing something for Halloween tomorrow? My daughter is having a little get-together and I have a stunning black and orange wig to wear! My oncologist has recommended a 5 day course of radiotherapy starting in the next week or two. Apparently, when's its targeted at the skull it can make you feel a bit muzzy and I may lose some hair so the black and orange wig may come in useful! It's true that you feel happier when there is a plan in place, so hang on in there, those of you who are waiting for results, answers, decisions etc. The terminology is all new to me and I was interested to read your post, Cathy, about tumour markers. No-one has mentioned those to me. Hope you all have as good a weekend as possible, and enjoy Bowness, Janette.
Love to all, Anne xx
Glad you had no problem getting your GP to prescribe, apparently there is quite a difference in price which is why the generic is ofen given, you'll know this of course being in a pharmacy. My pharmacist knows I have the branded and I (touch wood) don't have a problem with supply.
I have just noticed a post on the Cyber cafe from a new mets woman Julz, she is understandably in shock and scared,I do not know where her mets are but I'm going to suggest she comes to this thread for initial support, so can you lovely ladies keep your eyes open for her and give her a welcome and some hope xx
Hi ladies, just a quick post to let you know that I saw my GP today for my zoladex injection and while I was there I asked if he would prescribed me femara rather than letrozole and he said that was fine and he didn't have a problem doing so. I must say it was a different story trying to find a pharmacy that have any in stock, fortunately I work in a pharmacy so I am able to order it from our suppliers.
Hope you all have a lovely weekend, I'm off to Bowness for the weekend in morning 😊
Hugs Janette xxxxxxx
Gosh - didnt realise that this was worldwide , thought it was just UK and so its nice to hear from you in the USA. and also from you Cathy ( assume you are in the UK though) .
When I went on this site 11 years ago, I found a lovely English lady that lived in Spain and I think we e mailed every day for 5 years and shared our fears, tears and pain . I actually went to visit her twice too. Sadly she didnt make it and died 6 years ago which at the time was such a blow to me.
I know this sounds really vain but the worst thing I remember from 11 years ago was the chemo and loosing my hair , I have been reading about cold caps but they still seem to be hit and miss.
Im still waiting to hear about an appointment for my CT scan and it doesnt make the waiting any easier but I must accept there are other patients not just me !!!
I was diagnosed with stage three in late August this year but following a CT scan in early September was told it was now stage 4. I am being treated with Letrozole (with minimal side effects) and adcal D3 (it gives me the runs) and 4 weekly denosumab injection (no side effects so far)