Member
Posts: 235
Registered: ‎14-03-2018

Re: Bone mets - please join in

All these emotions are utterly normal and I imagine we’ve all had them. I certainly did in March when I was diagnosed with Breast cancer in the bones all at once. Now it’s December and I’ve been on a regime similar to yours since April . Scans are encouraging so so far so good. I still have my moments but am certainly calmer. It’s easy to say but we do need to get on with living x
Member
Posts: 5
Registered: ‎10-07-2016

Re: Bone mets - please join in

I was diagnosed with lobular cancer  my right breast in 2015, with DCIS in left breast. Started on Letrozole and denosumab then DCIS progressed and had a lumpectomy in  January this year. CT again on the 19/12,so fingers crossed everything is stable.cant have chemo as am neutoopenic. Hope this helps

Member
Posts: 1
Registered: ‎26-10-2018

Re: Bone mets - please join in

Hi All, im new to this and after a month of following this thread i felt ready to post my story. I was diagnosed with breast cancer in Sept, had a mastectomy and then scans that followed revealed that it had spread to my bones.... to find out i had breast cancer was devastating enough but to find out i had secondaries soon after was quite a big blow to say the least. I went through a phase of crying, sobbing , being angry, i had every emotion going and all i could think about was not seeing my children grow up. My cancer was er+ and my oncologist was very optomistic about treatments telling me that my prognosis was really good.... not that we really listen to this, all i could think about was that i had cancer and that the inevitable always happens when it comes to cancer. I am trying my hardest to be very positive and reading some of these posts are giving me hope and inspiration. I am on a treatment plan of gosrellin, letrazole, palbociclib and denosumb, i was just wondering how many ladies were on this plan and how you were finding it. Thankyou for reading.
Debbie
Member
Posts: 321
Registered: ‎30-09-2017

Re: Bone mets - please join in

Thank you Janette and Bon. I find I feel a bit achey a day or so after but it soon settles, like you Bon I just think it’s doing it’s job! When I was originally on Denosumab it was given monthly at my hospital, although my Onc did say not to worry if I needed to miss a dose due to it’s longevity in the body, now 2 doses are given then it’s 3 monthly. Apparently around the time I had problems so did another couple of patients and the policy was reviewed. Interestingly, the Max Fax consultant had said to me that in their opinion 3 monthly was the dose she would recommend, again because of the length of time it remains in the body...years according to them and the Onc who gave me my news earlier this week.

I hope you are both keeping well and any treatments are being kind to you..Kate xx

Member
Posts: 1,598
Registered: ‎01-05-2012

Re: Bone mets - please join in

Good news Kate. Hope you can stay on Denosumab now. Had some yesterday, my bones ache today. I suppose i can feel it doing me good!

 

Take care Ff. As long as you can see out, don't worry about the detail

 

Bon xx

Member
Posts: 1,594
Registered: ‎21-05-2014

Re: Bone mets - please join in

Kate, that’s excellent news, really pleased for you!!
Hugs Janette xx
Community Champion
Posts: 4,306
Registered: ‎01-05-2012

Re: Bone mets - please join in

Kate21, Bone scan said cancer in t-11,  MRI said no sign of cancer, but osteoporosis in T-11 and 12 and broken. Dexa scan of femur said no osteoporosis. Crazy! 

 

I do very well but I'm very careful. I washed windows a few weeks ago and killed my back forcing a window shut. Won't do that again.

 

FF

 

 

Member
Posts: 321
Registered: ‎30-09-2017

Re: Bone mets - please join in

Hi FF, thank you, I was treated with Letrozole and Denosumab but cutting a long story short, then got a jaw problem after some dental work and couldn’t have my Denosumab for total of 10 months, consequently some weakness has resulted in my bones..Dexa scan showed borderline Osteoporosis in my spine but my femur was fine, thinking my age is also a contributing factor. I’m back on the Denusomab so hoping things will improve by the next  Dexa scan. I’m very lucky with my Oncologist, GP, etc, but she was on holiday and hadn’t met this chap before, very nice but he did confuse me! It definitely was cancer when I was diagnosed October 15, straight to stage 4, my primary has never been found, but I’m just happy, whatever he meant! I remember reading on here about your back, from what I’ve since read sounds like you’ve made a good recovery? Hope you’re otherwise keeping well, Kate x

Member
Posts: 22
Registered: ‎10-12-2018

Re: Bone mets - please join in

Thank you,
The thing is i cannot nowhere found it, that someone with meta in vertebrae wear something like that.
Alozex , is something for hormonal dependet tumors for postmenooausal women. It works pretty long but stop.
Community Champion
Posts: 4,306
Registered: ‎01-05-2012

Re: Bone mets - please join in

[ Edited ]

Magick, I don't really have mets in bones. One time they said I did, then they said no. Last year I broke my back and they gave me a brace to wear until I had surgery. This thread for bone mets has ended up being a place where all of us chat even if we don't have bone mets. My mets are in my lungs and lymph nodes in my chest. 

 

Never heard of Alozex. 

 

FF

Member
Posts: 22
Registered: ‎10-12-2018

Re: Bone mets - please join in

Thank you Funnyface,
I have questions....did you was forced to wear kind of shell cos of yours metas in bones ? ( it holds also neck)
....and if Alozex stop working, will not bone metas elevation till the other start work?
Community Champion
Posts: 4,306
Registered: ‎01-05-2012

Re: Bone mets - please join in

Magick, You are doing fine with your English. As you read along you will find differences in my English too. Americans even spell things differently. Ex: We say...The blanket is "cozy". I think I've seen the ladies on here using "cosy". Your English will also improve talking with us. I never did well with languages. I think I would do better if I moved to another country and had to learn. 

 

I was in my younger days learning a good bit of sign language because I had a friend with a deaf brother. I don't remember much. I can still sign the alphabet and a few words. 

 

Have a good day! FF

Community Champion
Posts: 4,306
Registered: ‎01-05-2012

Re: Bone mets - please join in

Kate if they think it's not cancer that's great. Make sure they keep an eye on the arthritic changes. I have osteoporosis from all the cancer treatments. I've lost 2 inches in height. Also last year broke my back and they cemented and pinned it. I'm now on none strengthening drugs. It is called prolia and you get it every 6 months. FF

Member
Posts: 22
Registered: ‎10-12-2018

Re: Bone mets - please join in

Kate21
I wish you that all is good as that look like that all is good and stable. ( my english its not so good to explain well medical facts, but ask your doctor )
Member
Posts: 321
Registered: ‎30-09-2017

Re: Bone mets - please join in

There wasn’t any mention of infection, only arthritic changes, and my blood results were very good. You too, best wishes, Kate x

Member
Posts: 22
Registered: ‎10-12-2018

Re: Bone mets - please join in

Hi , so we do have meta insemination in bones. Alozex was taken away of my mum, she is now on zoledronat acid and 500mg Faslodex. She has no fracture, no pain.....please we become such s metal and plastic construction, its horrible to wear, have someone experience??? Mum doent want to wear it as she is uni proffesor (math/fyzik) and i cant take away the joy of working from her.....
Member
Posts: 22
Registered: ‎10-12-2018

Re: Bone mets - please join in

Hi Kate 21
I am not a doctor, but it should mean that there is kind of infection in bones ( mostly having older women when bones does not work properly because body is not ptoducing what should ). By my opinion it should not have been any meta. But i am not sure after cancer diagnose if it can cause later meta ( as i know that meta like to be there whete is a weak point ....its easy for them to settle down there and grow ), regards from czech republik stay strong and well
Highlighted
Member
Posts: 321
Registered: ‎30-09-2017

Re: Bone mets - please join in

I’ve just had my MRI results and while I’ve been NED for almost three years today I was told there is no sign of cancer in my cervical spine (where my mets are) and the scan is now only showing arthritic changes. I said about having been NED (it wasn’t my consultant as she’s away) but he just said again about arthritic changes. Obviously I’m delighted whatever he meant but wondered does anyone know is there any difference? Thanks 

Member
Posts: 22
Registered: ‎10-12-2018

Re: Bone mets - please join in

Pippin and Funnyface, thx for nice welcome, just to add ( mum has axial nodes taken away, bit of hand lymfeden..bigger hand ) and she ist all that time covered dayli Alozex + Every second day Calcium.
We are going for plan tmrrw, i will post it. I hope that all goes well.
Being here for soo many years with meta it is the best kick of motivation and proove that life prognosis we should not study. 🐢🐢🐢
Member
Posts: 22
Registered: ‎10-12-2018

Re: Bone mets - please join in

I only hope that my english is good and you will apologize when i do some mistakes. Thank you very much
With happy and trength hug
Magick