Bone mets - please join in

[Law36]

Thankyou for the advice ... It is also nice hearing someone has gone through : going through the same thing ... u feel like your the only one ..... Thankyou again for your reply xxxxx

[edwina64]

Hi everyone not sure I shoild be asking b this question here or on the treatment page but here goes. I have been on cape for three cycles and just started the fourth. I have developed a lot of breathlessness  especially after walking up stairs.  before I started cape my onc said my mets had developed in my lungs about six months ago and the e/e treatment I had before cape wasn't working . What  I am asking is has anyone had breathlessness with cape or is my lung secondaries making me breathlessness!  bit scared and not seeinf  my onc for three weeks. 

[Rose_Red]

Ginette thanks for replying. I am on a real downer just now and that is not like me. I have been unwell since 24 October and just don't seem to be able to pick myself up. I have breast, spine and liver mets, first diagnosed November 2011. I have had 4 types of chemotherapy and started Exemesatne on 20 October.  Until last month I have tolerated everything pretty well but now !!!!!!!! The only good news is that after a thorough examination by the GP she declares that apart from the dry cough, the inner ear infection, the lack of appetite and the tummy problems I am very well and the cancer is stable. I just wish I felt better.

[Carolyn52]

Thought for the day

When I was at the hospital this week, there was a very well off lady having all her BC treatment as a Private Patient and I thought to myself ..........Cancer doesnt choose it just hits us unlucky ones whether posh or pauper.  

What is Wealth if you dont have your Health. 

carolyn xxxxxx

[Carolyn52]

Hiya ladies out there. Although I dont always post on this every day, I do read the links and replies and can honestly say that Im so impressed with all the knowledge you have all gained and the strength you fight with it all. 

Im still waiting for bone scan results next week but in the meantime have had a one off blast of rads yesterday on the hip and they said it would flare for a few days which is a good sign apparently. Im just taking Letrozole and Calcium tablets at the moment. Paracetamal and a hot water bottle at night are my best friend to get some sleep. My journey into the unknown is just beginning ........

Carolyn xxxxxxxxxxxxx 

[belinda]

Why thank you Chocs... 😕 The little scamps are looking resplendent in those Santa Helper outfits. I have sent them over to the Cyber Cafe to help set up the Grotto. 

[Chocolates]

Welcome to all the newbie's. It's so reassuring to read all the messages of support and of course our belinda's inspirational story. Nicky, as ever, always knows how we feel and writes it so anyone can understand. 

Sorry im so quiet - it's all so busy at work and my day off is spent catching up with the dreaded house work and chores. 

I had a lovely half term and managed to fill it with catching up with friends. Flu jab made me unwell for 24hrs but then fine and then I was back to work and needed a rest!! Plus of course the quads!! I'm sending them to aunty Belinda for a while!!!

huge hugs everyone

hxxx

[VixViking]

Janette no I haven't seen that but it sounds exactly how I'm feeling, but yes I'm a tough cookie and pick myself up, plaster the smile on, and attempt to function as best I can. XXX

Belinda that is amazing and gives us hope. I'm so glad to hear you have kept well for so long and I hope you manage to find more treatments to suit you. I'm 40 with two little ones so I need to believe I can at least see them through their childhoods. XXX

Much love ladies, Vicky xxx

[belinda]

Hi to all the newbies from me. Just wanted to let you know I was diagnosed with breast cancer and bone mets together twelve years ago, in 2003. My hip spontaneously fractured and I received my diagnosis and a hip replacement. I was in my early 40's. Big shock, as it is for everyone here. 😞  

But for the last ten years I've been lucky to have some good responses to treatment. The last couple of years have been more problematic, chemo has certainly been trickier but I'm still here, older but no wiser. 🙂 

x

[Marirose]

Hello to all Newbies it is good to see you all joining in with your posts.

Exemestane does have its se I was on it about 18month 16month Everolimus although it was hard  to define which caused which se but I too had a dry cough during the treatment. Infact I also suffer with a dry throat in which I carry cough sweets and throat spray with me all the time. I am now on a new treatment and it will be interesting if I carry on with the cough.

Nicky thankyou for making me question the Receptor Status my onc gave me quite a bit of time and explained quite alot. When I first got my cancer in 1996 it was a Ductal cancer and I was HER2- but when it returned in 2013 it had become HER2 plus  sorry upper carrage isn't working  Anyway it made me understand more. The first time I was just pleased they had got rid of it or so it seemed and little was said about getting it a second time then. We didn't have BCC then and computers were not as widespread as they are now so thankfully we now can share our experiences.

Best of luck to you all xxx

[rosie53]

Vicky I totally get where your coming from about feeling disconnected from the world/people, have you seen the cancer advert on TV where the guy is out there in the middle of nowhere in a desolate place?? That is such an true reflexion of how this nasty disease makes you feel at times isn't it, but hey we are tough girls and we have our cyber mates bounce off and keep us strong.

Take care ladies Hugs Janette xxxxxxx 

[ginette65]

hi rose red

i have been on exemestane for 8 months.i have tolerated it quite well,but have had a dry cough for about two months which is getting gradually worse.i have lung mets and just recently diagnosed with acid reflux.my problem is,i dont know which of these three is causing the cough!

by the way,the exemestane has shrunk some of the tumours.

ginette

[VixViking]

Thank you Dinky and Nicky

Nicky, my original primary dx was 9 years ago and you're right, it definitely sorts your friends. This is now happening with more or less a whole new set of friends, mainly school Mums. Everyone is so supportive but then I think this is me now and eventually people do forget but I will be this new me and there's only so much other people can take. My GP (who is wonderful and easy on the eye haha) 😉 told me to stop worrying about everyone and worry about myself. Easier said than done though. Funny you mention family, I can already feel the Christmas stress coming about what they can buy the kids and what we're doing etc. and I'm just thinking as much as I want a fab Christmas I'm struggling to feel motivated about it, but my Mum will just carry on getting stressed over it as though this isn't happening because I seem and look fine.

These forums are great as everyone gets it.

Vicky xxx

[nicky08]

Hi Vixviking

Yes, it is very lonely but this forum really helps because you can offload on here knowing that everyone understands. Unfortunately there is a misconception that you have to be looking really grim to have breast cancer, especially secondary breast cancer which often is just not the case. So friends and family either treat you with kid gloves at the beginning when it's all so raw or then seem to forget it all when you look OK. Boy, have I had strong words with close family members when their supposedly helpful or jokey comments are so bad, grrrrrr. Even my lovely husband sometimes (still) gets it wrong and he gets it in the neck from me! All this doesn't help one bit as its not that often you meet another person with secondaries in 'real' life - when you do it's a relief to be able to talk honestly!

I hope, as you come to terms with your diagnosis you are able to still keep close to the friends who understand you the best. This disease certainly sorts out your friendship groups! And, more importantly, the priorities for YOU, not everyone else!

Nicky x

[Dinkybaby1]

Vix it's sooo awful the emotions ya go thru and it's not even me facing diagnosis and treatment! The guys on here are fab and I find if I'm starting to despair that there's always someone here offering hope!
Hope u feel less lonely soon! God Bless

[Law36]

Thankyou to everyone for their advice I really do appreciate it .... We are still waiting for results of biopsy for mouth ..... Then hopefully a treatment plan will be put into place and mum will get some advice for the pain and be able to get her strength back up again thankyou again for all your kind words xxx Laura

[VixViking]

Nicky just read your comment to Lesley and one thing stood out for me....how lonely it is with this.

I'm feeling so disconnected from the world and my life. People who used to ask me for help don't any more..probably being kind really as they don't want to burden me. In turn I'm withdrawing from everyone and that's actually making me feel more on my own than ever. 😞 x

[Rose_Red]

It could be from last chemo or could be from new hormone tablet. I am just trying to get to grips with it and that is not easy. Thanks for replying. Rose

[belinda]

Hi Rose, I'm on Eribulin at the moment, dry cough is a common side effect, do you think it may be from the after effects of the chemo? I have the dry cough and did not have it before starting this chemo.

[Rose_Red]

Help please ladies. Having completed 10 reduced doses of Eribulin I have been put on Exemestane and appear to be suffering quite a few side  effects, extreme tiredness,  tummy problems and a dry cough being the worst. Does anyone have any advise to offer following their own experiences?  Rose-Red

[rosie53]

I'll second that.......your a little star Nicky, always on hand to offer help, advice and support to us sbc ladies
Hugs Janette xxx

[Dinkybaby1]

Nicky u r a wonderful help! I'm gona thank God everyday for my new cyber support!

[nicky08]

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.

Nicky x

ps edited due to some weird and wonderful typing auto corrections which did not make sense at all once I'd read it back!

[VixViking]

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

[Dinkybaby1]

Hi Nicky,

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!

[nicky08]

Hi Laura

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.

Nicky x

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

[Dinkybaby1]

Thank u Julie! This is sooo helpful and I feel like I've made a bunch of new, very knowledgeable friends!!!!

[Law36]

Hi I always read this forum for support and advice .... My mum had breast cancer was dx 5 years ago ... 2 years was dx with spine , pelvis and ribs ..... ...?after a lot of pain and an op to her arm as the cancer had got in there too ...... We have now been told that it had gone to her left lung and she is very breathless and I am getting extremely worried .... They have stopped her denosumab bone Injections ... Have radium to lots of areas to help with pain .... And she has had a mouth ulcer for 7 weeks which they now think is cancer ....!!!!! She has gone very weak and waiting for radiotherapy to her mouth so she then then have cape .... It's such a worrying time and I was looking for some advice or maybe someone that has been through similar thankyou X Laura X

[JulieD]

Hi Dinky,

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.

Julie xx

[Dinkybaby1]

Thank you Janette!
You guys are all so positive and it's giving me the hope me and mum need to carry on fighting!!!

[rosie53]

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 

[Carolyn52]

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,  

[Dinkybaby1]

Thank you Lynnq and everyone else for the positive and inspiring stories!

Yes im a daughter ha ha!!

Lesley

[Lynnq]

Hi Carolyn. I have been on letrozole for 3 years now.
My hairdresser told me that she thinks my hair is getting thicker!!!
It is thick anyway, I queried highlights and bleach with the BCN who told me to just carry on as I always have.

[Lynnq]

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......

[Dinkybaby1]

Hi everyone,

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.

Lesley

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[Emerald1959]

Hi Carolyn

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

Take care

Cathy

[Marirose]

Hi Carolyn

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

[Marie123]

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

[Carolyn52]

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 !!!!

[JulieD]

Hi Carolyn,

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.

Vixviking,

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

[Marie123]

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

[Marirose]

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

[Marirose]

Hi Carolyn
I was on Letrozole 3 year ago it stopped working for me but I had little se but everyone is different some have been on it years and swear by it some have se some don't.
Denosumab is a bone strengthener and calcium tablets are what we take with this. Again I have taken it for nearly 3 years and again I have not had se but again some have had se.
I have a bone met in the spine and as yet no pain. I do have a friend who has the same as you while she has had this for almost same age as you and she needed dental treatment while having Denosumab she had to miss a few injections to have the dental treatment.

Sorry I cannot help you more but best of luck let us know how you get on xxx

[Carolyn52]

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.

Carolyn xxxxxxxxxxxxx 

[Marirose]

Hi VixViking
I have a spine met on my sacrum because the onc thought I may have a compressed nerve she arranged an MRI scan it took 30mins because they had to take about 5 slides to examin the spine. They found I had a slipped disc . Before this at the beginning of dx they said if I had pain they would give me pain relief with rads as yet I haven't needed it that was 3 years ago. As Nicky says there are ladies who have been through the rads and will give you their experiences. Don't lose heart you seem to have a caring team around you.
Wishing you all the best xxx

[nicky08]

Hi

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.

Nicky x

[VixViking]

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.

[granny-anne1949]

Hi Sammeelee,

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

take care,

love Anne x

[nicky08]

Hi Sameelee

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.

Take care

Nicky x