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Bone mets - please join in

scratch
Member

Re: Bone mets - please join in

Hi Janette..well I know puppies are hard work full of energy and that's what we dont have ..so at least she's gone to a good home.❤ xx
rosie53
Member

Re: Bone mets - please join in

Morning ladies, 

Hi Carolyn, sorry for my absence just on a real downer at the moment 😣my little Heidi has gone to live with a family member. I was just finding the responsibility and demands of owning a a young dog too draining, she's a beautiful little thing but was very needy and wanted constant attention. Still soo upset with the whole situation and miss her terribly.....feel like such a failure!!  know she will now get the full attention she craves now as the couple she now lives with are both retired so can spend lots of time with her and I can go spend time with her whenever I want and she can come for sleep overs!

Hope your all keeping well Hugs Janette xxxxxxx 

HelenAquarius
Member

Re: Bone mets - please join in

Thanks mo.. The snr doc finally came round.. Was lovely and did some strength test and said he suspects it's sciatica but just to be on the safe side they want the MRI done tomorrow. I had one when I had primary BC - very noisy if I remember rightly. So not worried now, just taking it easy and relaxing. Like you say, no washing up and the chicken Kiev was not too bad for dinner here!

Helen xx

Carolyn52
Member

Re: Bone mets - please join in

Jultz and Jeanette
Why radio silence ? Are you both ok ? How's the Sumner house jultz ..photo yet?
Jeanette ...did u enjoy the lakes and get spoilt on you anniversary ?
Xxx
redridinghood
Member

Re: Bone mets - please join in

Helen,

 

Sorry about 'SCC'! But you got it!

 

And remember that you can have back pain caused by a slipped disc and surgery can fix it, even though the disc is very close to nerves. It is certainly a sensitive area......the spine.....for you & for surgeons, but things can be done, including radiotherapy to shrink things. I am no expert, but having bone mets myself, including lower lumbar vertebrae, I have tried to learn a bit from other ladies on these threads. Also my onc mentions it from time to time, to keep aware of possible symptoms. But your symptoms may not be SCC, so you just have to wait and see. Could just be plain old sciatica. Good luck tomorrow........hope it isn't too exhausting, having tests etc. Have you had an MRI before? I haven't......yet. But must be done, to rule it in or out. And if they suggest staying overnight, well, it will save driving back & forth! Do you have a 'grab bag' with you? You can lie back and let them keep an eye on you. And who knows, the food might be ok too! No washing up.

 

Take care, and just be patient for now. Best of luck, and thinking of you tomorrow,

 

mo     xx

Carolyn52
Member

Re: Bone mets - please join in

Hi Helen.
Hope by now they have made a decision and u know what's happening.
Sending loads of hugs xxxx
HelenAquarius
Member

Re: Bone mets - please join in

Ahh.. Just figured it out! SCC is spinal chord compression.
😬

HelenAquarius
Member

Re: Bone mets - please join in

Thanks mo.. I am still here. They are gonna MRI me tomorrow but can't decide whether I need to lie in a hospital bed overnight or go home and come back. Seems to be taking ages to decide!

Fortunately I've got my iPad and free wifi here so it's been ok! What's SCC?

 

Xxx

 

redridinghood
Member

Re: Bone mets - please join in

Helen,

Was reading your worries about spinal cord compression. Yes, it can be treated, in various ways depending on the specific case, but as usual early detection is always best. Hence your onc being concerned. You are doing the right thing to visit A&E. They won't mind at all, and will refer you, hopefully then and there, to someone who can diagnose what is happening, probably with an MRI scan. As Carolyn says that could take time. Take a person with you, or a book! Hopefully it is ordinary sciatica, but if not, then it will be dealt with. I have read of others on these threads with SCC being successfully treated.

 

All the best for today & thinking of you.

mo       xxx

Carolyn52
Member

Re: Bone mets - please join in

Hiya Helen.
I'm not really sure about the numb toes but cancer mimics a lot of other things and hence the reason I was nearly a year misdiagnosed.
Most of my pain was in the hip when I put weight on it and top of leg.
I think you are wise to get it checked out as I think a lot of ladies talk about spinal compression which can cause a lot of pain.
You might b sat at hosp today for a while though as like ours ..they r busy!
Keep in touch.
Xxx
HelenAquarius
Member

Re: Bone mets - please join in

Hi Debredley

Welcome. 20 years between primary and secondary is a long time - I think most people think there is this 5 year all clear for cancers generally but I've always understood it to be different with BC, could come back at any time. This forum is fantastic for support and information and we look forward to getting to know you.

 

Carolyn, can I pick your brains? Went to onc on Friday, is concerned about the sciatica in my leg and weakness in my lower leg and wants MRI. Am booked for Saturday but he said if it gets any worse to get down to A&E as it will happen quicker. Anyway, I'm now worried and have numb toes so am gonna have brekkie and go down to A&E and see what they say. What can they actually do if it is to do with the cancer pressing on the spinal chord? Isn't it all too delicate round there to do much.? Helen xxxxx  

Carolyn52
Member

Re: Bone mets - please join in

Hiya debredley
Sorry you have had to join this elite club but you will find that we understand what u r going through.

I was dx with primary in 2004 and was so chuffed to hit the ten year landmark clear. I retired and moved house and intended to grow old disgracefully !!
Oct 2015 after being diagnosed with trapped nerve, sciatica and arthritis for a year ..I was finally dx with bone Mets to hips, pelvis , femur and spine.
It's a shock as somehow after so long ..you forget about reaccurence.
Once u get a treatment plan in place ..u will have a focus. It's not easy and sometimes treatment isn't either but with the support of the other ladies you will cope and maybe share a bit of humour with us as well.
There is lots going on here if you join the private forum ..book clubs, recipes and gardening etc so please join us.
Xxxx
JulieD
Community Champion

Re: Bone mets - please join in

Hi Debredley,

 

I  am so sorry you've had such devastating news. It must be a big shock and you are probably all over the place. I'm glad you've found us though as we will understad and offer any support we can.

 

My primary was in 1999 and my bone mets were dx in 2010, so I  do have some idea of what you are going through.

 

It is hard, especially at the beginning, to get your head round it all, but once there is a plan in place you will probably start to feel a little more in control. Take things at your own pace, you will find a new normal but it takes time - be gentle with yourself and if you've any questions please ask.

 

Sending a gentle reassuring hug xx

DebHummingbird
Member

Re: Bone mets - please join in

Hi ,I've just found out I have Liver Mets after 20 years of my first ever Breast Cancer.I think it is the shock this time as I love being a Grandma and love travel ! Glad I found this as I don't know any other breast Cancer ladies to chat to x
Carolyn52
Member

Re: Bone mets - please join in

Hi Sharon.
Our dates match ...I was dx 2004 and then with Mets 2015 ( but they had been there for a while so prob 2013 they started)
We just have to trust the bone juice injections to keep our bones strong and maybe we will b like Popeye with his spinach ......
Hugs xxx


scratch
Member

Re: Bone mets - please join in

Hi tiger I remember that feeling I had bc in 2004 and had mx chemo and radiotherapy.then in 2013 it came back now I have it extensive bones.liver and periterium..i was frightened to bend over or clean the bath ..in case I snapped as well..sleeplessness seems inevitable because of our anxietys.but when you get a treatment plan in action you will find a new you.slightly different but still the same you..this is a great site for us all..take care love Sharon.xx
Carolyn52
Member

Re: Bone mets - please join in

Hiya tiger and welcome.
Well you have come to the right thread as we are all "metsers" here and most of us enjoy a good quality of life.
You will probably be seeing your oncologist soon for a treatment plan and until this is in place you will feel in limbo.
Treatments vary with every person as we are all individuals but no doubt it will be a bone strengthener injection ( mine is monthly and called denosumab ) it's a quick jab no prob.
You might have hormone replacement in some form or even chemo but trust your oncology team to give the correct way forward.
Please keep in touch with us here ...we can support you and there are loads of other threads too which you might find helpful.
Hugs xx
Marie123
Member

Re: Bone mets - please join in

Good Morning,

Firstly ypu are not a wimp, we all recognise those feelings. I posted this recently , I too had the doible  whammy, bc and mets to bones. I didn't really understand , but was very , very frightened. I started planning my funeral and felt very vulnerable. That was nearly three years ago .
I have had the lump removed, 2 bouts of radiotherapyy, and am now on 2nd hormone treatment, I have bone injections (at first every month)but now every three months.

I am well and work . I do not take pain killers and am very mobile.

We are all different, cancers are different, however there IS a lot of treatment out there. I am so sorry you have had to join us, we all have bad under the duvet days . You will find a new you .

Take care

Love
Marie xxx

daisyjane181
Member

Re: Bone mets - please join in

Hi Tiger

i too was diagnosed with breast cancer 3 weeks ago after first mammogram at 48. One week later got told it had spread to bones but only spine. Had bone scan then got told it was extensive in bones. Absolute horror. Thought that was it only a few months to live but reading up especially on these forums has shown that this isn't necessarily the case. My oncologist says not months but many years and I'll see my children grow up. I've been put on biosophosonates to strengthen bones and the only faff is sitting upright for an hour after taking it. Then I am on tamoxifen which I'm four days into taking. I've also got a short dose of steroids to combat tumour flare which I am having a bit of at the mo. I'm finding long dog walks every day really help and goodness knows where the strength is coming from but this wretched condition isn't getting the better of me. Of course wobbles are inevitable and believe me I do get them but I've been told there are many treatment options to try and control this for a long time. I know you must feel like the whole world is crashing down and we've now entered a surreal world of hospitals and drugs. Up to 3vweeks ago I didn't even take paracetamol for a headache. I'm here if you'd like a chat as we are obviously at pretty much the exact same stage. All the best. Debbie x

Tiger14
Member

Re: Bone mets - please join in

Hi, not sure if I've come to the right place but have been diagnosed with bone mets two weeks after first diagnosis of breast cancer. I'm lost, I'm numb, I'm too scared to sleep and too scared to move in case I snap in two. My spine looks like a Swiss cheese and my hip is a mess. All I see in front of me is pain, hospitals and a fast demise. Don't know what else to say right now but I need to know I'm not alone and that someone else understands. I'm only in my mid forties. I keep thinking I'm going to wake up any minute and it will have been a nightmare...but I don't. It's real and it just won't sink in. Please could someone just tell me something positive that I can hang on to? Sorry to be a wimp.

Carolyn52
Member

Re: Bone mets - please join in

Ha ha. My grandson is in his room with his PlayStation, kindle, my tablet and is texting on his mobile and eating a pot noodle !!!
Such a healthy lifestyle ....not. he has a football and bike in the garage that hasn't seen light of day this year.
Xxx
Mrstimps
Member

Re: Bone mets - please join in

Thanks sharon, good to know it might settle down. Chatting this evening and she has for some more scans on wed which are worrying her too. Im passing on your experiences and its helping so thank u ladies xx
scratch
Member

Re: Bone mets - please join in

Hi Mrs stimps yes I took I last year and kept crying even something on tv..it did settle down after couple months...sharonx
scratch
Member

Re: Bone mets - please join in

Carolyn.I know what you mean about kids computer etc..we took grandson cinema yesterday and today out for pub lunch garden area..he sat under the bench for ages like a puppy as the sun was spoiling his screen views..oh well...i think they play a bit too much.xx😊 sharon
julzd
Member

Re: Bone mets - please join in

Thanks carolyn il have a look on the threads I never like to read them . I've ate loads today too I've been listening to a fab book on audio books called me before you I'm really enjoying it x x
Carolyn52
Member

Re: Bone mets - please join in

Jultz.
Don't know whether I'm telling grandma how to suck eggs but if you go into "going through treatment" ..then targeted therapies ....there's oodles of threads about herceptin and it would seem that its not as easy as everyone says to tolerate. You might just find something there to reassure you.
As u know ..I'm as much use as a chocolate teapot for sensible advice 😀😀😀😀
Carolyn52
Member

Re: Bone mets - please join in

Welcome back jultz.
I was thinking u might b on your hols as you have been in radio silence !!
Hope u enjoying the lovely sunshine up north too.
I'm slobbing today as had all 3 grandchildren yesterday and last night and its just food and food all the time.
Hugs xxx
julzd
Member

Re: Bone mets - please join in

Just wondering if anyone on Herceptain gets aches in their legs don't know if it's from the chemo or side effects from the Herceptain or it could be the injection zoladex feel more aches now than when I was on chemo and I've been finished it a couple of months x x
julzd
Member

Re: Bone mets - please join in

Hi everyone hope your all ok I've been working so haven't been on for a few days. Happy anniversary janette. Sharon I'm the same loads of energy then I crash my legs ache like I've did loads of excersice the day before do yours ? Carolyn hope your ok x x x x
Carolyn52
Member

Re: Bone mets - please join in

What a caring daughter you are. She will b fine with leyrozole once she overcomes the side effects.
If she looks at the leaflet that comes with the pills ..there is all sorts of se listed and its easy to have all of them !!!!
Xx
Mrstimps
Member

Re: Bone mets - please join in

Thanks carolyn 🙂 its my mum so not sure what brand shes on, will have a peek when im there later. Just want to do as much as i can for her x
Carolyn52
Member

Re: Bone mets - please join in

AAGH the joys of letrozole. Moods, aches, hair thinning but it does settle down.
I posted on another thread about the different brands we get ...there is a difference and the one I got last week is giving me aches more.
I find cipra brand the better but only as I had that one four months . I've got accord now.
There is always se with hormone therapies as its changing the way our bodies work by stopping the oestrogen feeding cancer. You wi settle and its better than chemo !!!
Hugs xxx
Mrstimps
Member

Re: Bone mets - please join in

Morning all, hope eveyones having a lovely sunday 🙂 can i pick your brains? Has anyone on letrozole had a huge dip in their mood when first taking it? Does rhis settle down or is there anything that will help it? Thanks x
Carolyn52
Member

Re: Bone mets - please join in

Happy anniversary ....
Enjoy yr full English brekky .Yum. all part of the holiday.
Plenty of walking today for you around the lakes with such gorgeous weather. Bet u missing yr little girly though.
Hugs xx
rosie53
Member

Re: Bone mets - please join in

Morning ladies, sorry not posted for a few days had a lot going on.
Well we're in Bowness in the Lake District and it's a beautiful morning, just having a coffee in bed then going down for my full english!! 😊 it's our wedding anniversary today so hoping to get spoilt 😀
Take care ladies hugs Janette xx
Carolyn52
Member

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Phew its early and so hot already ..hope u get this Sun when u come to Torquay.
Early start today with three kids awake early and wanting breakfast and their early morning " fix" on their computer stuff.
scratch
Member

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Hi Carolyn have a lively and lovely weekends.😊 sharon
Carolyn52
Member

Re: Bone mets - please join in

Oh Sharon that is going to be really nice as its lovely. I personally like living coasts ( the penguin house) its right on the sea front too.
On the front by the harbour is a Chinese lady that does reiki and sells various therapeutic jewellery etc as well which might interest you. There will b loads of flyers around with attractions on in the area too.
I've booked wall to wall sunshine for you as well. We are only about 30 minutes from Torquay but avoid it during tourist season.
My son has gone to radio one festival at powderham castle today ..loads of groups ..coldplay, take that, Nick Jonas etc . We have the 3 grandchildren today and for the night. Everything that links to internet ..laptop, tablet and even my phone is in action !!! And PlayStation!
Phew tomorrow I shall be shattered. Just been and got McDonalds for them ..that's gobe automatic and I was glad they were on hand to help!!!
Hugs xc
scratch
Member

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Carolyn iv booked few days in Torquay soon..so can you arrange sunshine for me please😊 xsharon
scratch
Member

Re: Bone mets - please join in

Hi jultz how you doing?..im having spurts of energy and then crash back to tiredness.hope your using summerhouses...take care sharonxx
Babsy
Member

Re: Bone mets - please join in

Hi Tat, only signed up to follow them on Facebook xx

tat4tit
Member

Re: Bone mets - please join in

Thanks, Mo.  It gives me hope and I wanted to share that with you lovely ladies.  Babsy says she is signed up for the study, so they may still be recruiting?

 

I've found this forum such a source of support through the common aspects of treatment, but it's incredibly hard to get reliable data for primary angiosarcoma.  I know of two other primary breast cases in the uk, one 10 years clear and the other with extensive mets 😞 

 

Hope the sun shines on everyone this bank holiday weekend xx

Stillhere
Member

Re: Bone mets - please join in

Carolyn, on the subject of horse shampoo, my speciality(!) I think you may mean Megatek. It's for re growth of horses manes and tails but I did buy some when I had EC chemo in 2009. I was a bit dubious so phoned them up and they said that lots of chemo ladies bought it. I'm not sure how much it helped tbh but my fluff didn't fall out at least!

redridinghood
Member

Re: Bone mets - please join in

Dear Tat,

Just to say thanks so much for the fascinating link........just the sort of news that is needed for those of us with secondary metastatic cancer, but it is also relevant to your angiosarcoma of course. Any cancer that has spread. I personally think that the time has come for the focus to turn to metastatic cancers. The 'cure' so far for most cancers, breast cancer in particular, has been to physically remove it before any cells have escaped. So the emphasis....and money......has been used to encourage people to spot it early, go for regular mammograms, and follow up physical removal with rads & chemo.........extra insurance, but possibly ineffective. But this initiative is pursuing a tighter focus, and uniquely encouraging patients to share their experience with researchers. I like it. They are finding 'extraordinary responders' and hoping to connect them to genetic markers. We need something like that over here. Three cheers for Dr Corrie Painter (who started her journey via her angiosarcoma) who has spotted the yawning gap and is filling it.

 

Thanks again. Very interesting and heartening. Do continue to visit these threads. The atmosphere is always cheerful and supportive, as you seem to have noticed!

 

mo     x

scratch
Member

Re: Bone mets - please join in

Hi Carolyn..the cannabis oil has the opioid taken out so dont worry...it is actually being researched in Britain with good results.but prob take years for them to decide..its obviously a plant so to be honest no worse than the ingredients of our meds...taxols are from a yew tree..capecitabine is a derivative of capers..some of the hormones treatments are derived from guinea pigs.and female horse urine..so no stranger..i havnt fully made my mind up .just very interested nothing to lose..xxsharon
scratch
Member

Re: Bone mets - please join in

Hi stress head I have been looking into it and had some advice from a therapist..its available on amazon its got to be a certain type. I will let you know within few days as soon as iv gone through it all..xxsharon.x
Babsy
Member

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Thanks Tat. Fascinating and brilliant stuff, thanks so much for sharing. I'm already signed up and following on line. 

B x

tat4tit
Member

Re: Bone mets - please join in

Hi ladies.  I hope you don't mind me posting this.  I read your threads regularly as my soft tissue sarcoma has a nasty propensity to pop up again locally (or anywhere it fancies, really) and I find your supportive attitude and humour immensly encouraging.  This has nothing to do with secondary breast cancer, but please stick with me a little longer, all will become clear!  

 

I received a Google Alert today for angiosarcoma (the reason I had a mastectomy last November, a primary in my breast).  The article below is about a woman called Corrie Painter who had the same primary as me.  She is also a post-doctoral medical researcher and has used her knowledge and skills to promote fundraising and research into angiosarcoma and now secondary breast cancer, also little understood and researched.  It's encouraging for all of us that new approaches are being used to gather statistics and identify new research avenues.  I wanted to put this out there for those of you that want to follow the project.

 

http://www.fredhutch.org/en/news/center-news/2016/05/metastatic-breast-cancer-project.html

 

Hugs to all.  Tat x

 

 

 

 

Babsy
Member

Re: Bone mets - please join in

Thanks for trying Carolyn x
Carolyn52
Member

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Jultz 

 

Did you ever buy that shampoo for horse mane/tail  that you had researched for quick growth ? I have been using Simple and hate it. Ive been looking online and there is so many that promise quick hair growth and results but its hard to believe whats good and bad !!

 

xxxx