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Bone mets - please join in

Magick
Member

Re: Bone mets - please join in

Butterfly,
Maybe i wrote it confusing, she dx brest cancer T3N1MO ( chemo, operation, radiation ) 5 years clean on Alozex ( same like Tamoxifen, but for postmenopausal ) than tumor markers little elevate, doctor start to search, meta bones found 2 weeks ago, already put away from Alozex and instead Faslodex+zoledronat acid. She have also suspicious ( after PET/CT) one lymf in lungs so they make biopsy on that to see if from the primary it hasnt change ER,PR,HER2 or that is not another cancer f.e lungs, which has already spread.
My mum was in bit of shock, but help her when we talk about it that i have some answers, and she had a big trust in her onco doctor ( she is great ). Its very hard to combine, mum, baby, problem and little things on daily bases, but you have to stay strong for your mum and baby and that little miracle who come on the world shoud keep your mum happy and positiv also. Living for grandchildren is the biggest motivation!!!
Magick
Member

Re: Bone mets - please join in

Funny face,
I really have a respect towards all ladies, who going through this. You are so inspirating ( i think there was many tough times passing chemo ets , dealing with many others things ) and you was still able to be here for others! 13 years with lung meta only showas how strong your believes are and how strong is your wish to defeat it! That should ve the biggest motivation for all of us. Thank you so so much being on this forum even i wish you have never ever been here.
Magick
Member

Re: Bone mets - please join in

Hi Butterfly,
I am in the same situation. But not after 10 years, to my mum it comeback in 5 years. The problem was, that nothing was suspicious, no pain, no other clinical problems, only CAE markers went from 2,3 slowly during 6 months into 2,8 ( which is still normal!!!l) and CA 15-3 went first from 28 to 35 to 51,9 and that was point when doctor become a red flag. My mum(doxirubicin,paclitaxel,ooeration,Alozex, now on Faslodex 500ml and zolendronat acid. ( my mum is 66 years )
With many many best wishes from czech republic
funnyface
Community Champion

Re: Bone mets - please join in

Butterfly, Welcome. The good news is that it didn't come back for 10 years! This might mean that it is slow growing. I went 10 years and then it showed up in my lungs.I have been here 13 years with it in my lungs.

Best wishes for your mom! FF

Butterfly1983
Member

Re: Bone mets - please join in

Hi All,

My mom had breast cancer in 2008. Then for the past 10 months she’s had real bad pains in her hip. They are that bad she’s been unable to walk without crutches, not been able to drive etc. From the beginning she has raised her concerns re the cancer but been brushed off time after time. She had a hip replacement in September even though from scans they said it didn’t look too bad. After hip replacement she’s still no better. Finally she saw a difffernt doctor 3 weeks back who sent her for an urgent bone scan and we were devestated to hear the scan is showing bone mets in skull, ribs, spine and pelvis. We have our first visit with oncologist tomorrow. Has anyone else been in similar situation? I’ve been trying to research it myself and the outlook always seems pretty grim but after reading some of the posts on here it’s made me feel a little more hopeful. I have a newborn baby too and finding this so hard to deal with but trying to put on a brave face and hold it altogether. Any information you can offer is really greatly appreciated x
silverlining
Member

Re: Bone mets - please join in

Many thx for your kind, supportive sentiments dear rHeartamade........what are your X'mas plans...?? xHeart

Kate21
Member

Re: Bone mets - please join in

Hello Silver, It’s lovely to hear from you! Sorry to read you’re still in pain but so pleased about your biopsy result. I hope you have a much better year ahead, don’t forget to let us know how you’re getting on. Very best wishes, Kate xx

ramade
Member

Re: Bone mets - please join in

Merry Christmas to you to Silver, i do hope your pain subsides, i found gabapentin works well in lrge doses, and morphine excellent into the vein, but no joy from morphine by mouth or patches.i was wondering if the new cannabis oil would help you, it is available on prescription now i believe. you have all my sympathy, constant pain takes up all your energy. thinking of you.

ramade x

silverlining
Member

Re: Bone mets - please join in

HeartHeartHeart..dear funny/f........just lovely to be understood, albeit from afar........even my oncologist shows no empathy......where does one go? Thank goodness i've a super rheumatologist.....xx

funnyface
Community Champion

Re: Bone mets - please join in

Merry Christmas Silver! Hoping your pain regimen kicks in and makes you more comfortable. I think when we get other things wrong with us along with already having cancer we get overwhelmed. I find drs and friends don't understand it. You tell them you have arthritis and you can tell that they are like So does everyone else! Yeah, but we have cancer, plus side effects of treatment and other things. Grrrrrr! But somehow we still keep going! FF

silverlining
Member

Re: Bone mets - please join in

To dear Kate21; funnyface; rosie53; bonariensis; Anne30 & ramade.........& anyone else I've missed.....

 

Just popping by to wish you & yours a very Happy Christmas and a safe, happy, healthy 2019!!

 

My oral biopsy came back as hyperplasia...so missed the bullet but they are going to be vigilant......

 

I'm still in a lotta pain, but I'm now on Morphine and Gabapentin.

 

Inflammatory arthritis just kicked off in my small joints...nae gr8 timing.......but hey ho....ho, ho, ho...here we go....

 

Love & all good wishes to u all....

 

silver.....xxx

rosie53
Member

Re: Bone mets - please join in

Hi Debbie, sorry you’ve had to join us but welcome to the forum.
My story (quickly) dx with low grade breast cancer in 2007 returned in 2014 in hips, ribs and spine, as with yourself and all the other ladies on here I was devastated, scared and felt very lonely at times.
Well I’ve now been on letrozole, denosumab and zoladex for 4 years and have remained “Stable Mabel” (just a little nickname we say for being stable) I feel well and still work partime.
Emotions and worries can still get the better of me from time to time but on the whole I try to get on with life and try to not let “C” rule it!!
Take care hugs Janette xx
Anne30
Member

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
ak.reddick
Member

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

Debuk74
Member

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
Kate21
Member

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

bonariensis
Member

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

rosie53
Member

Re: Bone mets - please join in

Kate, that’s excellent news, really pleased for you!!
Hugs Janette xx
funnyface
Community Champion

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

 

 

Kate21
Member

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

Magick
Member

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.
funnyface
Community Champion

Re: Bone mets - please join in

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

Magick
Member

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?
funnyface
Community Champion

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

funnyface
Community Champion

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

Magick
Member

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 )
Kate21
Member

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

Magick
Member

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.....
Magick
Member

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
Kate21
Member

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 

Magick
Member

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. 🐢🐢🐢
Magick
Member

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
Magick
Member

Re: Bone mets - please join in

Thank you all 🍀🍀🍀,
My mum was diagnosed with breat cancer T2N1aMo august 2013, ER,PR positiv, small Ki 12%. Trated neo chemo doxirubicin, partial brest save operation, after paklitaxel weekly( maybe it was before operation ) after radio therapy 28+5. She manage all well and kept working the same days of chemo was given. Than our life combeck to normal.
She had mammo control 12.11 and lung scan all was clean. But doctor start to be worried about slight higher level of suger in blood ( diabetes was not confirm ) , CAE 2,3 and CA 15-3was 35. Something start our super doctor bothered. Call my mum again for blood and CAE 2,8 and CA 15-3 was 51,9. And she start to do anything and everything ( so happy for such doctor ). All available scans, all clean, she discovered something in one survical vertebra C3 on PET/CT. Tomorrow early we go see our doctor. Mum has no pain, no deep breath and she is in very good shape. She celebrate 66 years 5.12.2018. I am not that crazy about researching internet ( i have done already enough, but only to be able to answer question of my mum as that made her somehow strong and she had none psycho fall down, she never asked the life prognosis ). And i found this forum. I thought it would be great co compare how it is treated elswhere, also shown other side ( daughters managing mother illness ) and having someone on side to understand.
Pippin
Member

Re: Bone mets - please join in

Hi Magick

You are welcome to join this site. Sorry to hear your mum has cancer. I got my first cancer diagnosis in August 2013 too. When my mum had breast cancer I wish there had been a site like this: I would have joined it. We are a "mixed bunch" meaning we are quite diverse. We can rant, learn to understand different points of view, sometimes even laugh and it certainly helps me to cope a little better sometimes. The site has been a bit quiet recently but there are a lot of people on it. Hundreds of years of experience I guess!

Pippin

funnyface
Community Champion

Re: Bone mets - please join in

 Magick, I'm from the USA and I belong! Also we have had family members join before. How long has your mom had secondaries? Where did it come back at? Mine came back in my lungs 13 years ago. Welcome! FF

Magick
Member

Re: Bone mets - please join in

Lovely good evening ,
May i join your forum although i am from czech republik and not me, but my mother is cancer fighter since august 2013?
Anne30
Member

Re: Bone mets - please join in

Yes. I felt like that. Gradually you will get used to the treatment plan. I’ve been at this since March and now don’t think about it all the time. I hope you feel better soon x
angiepops
Member

Re: Bone mets - please join in

Hi anne30

Thanks for getting back to me, feeling very alone at the moment, like i m in a bubble.

Angie x

gmc
Member

Re: Bone mets - please join in

Sorry not to have replied earlier Riversidedawn - I thought I had already but obviously not .....which is another thing I'll put down to chemo brain..again ! I don't appear so far to have had any SE from the denosumab . The everolimus and exermestane are the tough ones for me. Even the BC nurse said they can be hard to tolerate but I was crying at the time so maybe she was just being kind to me !. After a scan 2 weeks ago they discovered pneuminitis in my lungs so have had a 2 week break to clear it up as caused by the treatment. Now I'm back on it at a reduced rate and so far so good....although worried that it will only be half as effective now!

Good wishes to everyone on this thread, Gill x

Anne30
Member

Re: Bone mets - please join in

I was diagnosed all at once in March. I cried for ages. I’m on Anastrozole and Ibrance. I’ve had two PET scans and both show good results. I’m working full time and apart from low white cell count haven’t yet experienced any side effects. It’s not always easy but for me it’s doable so far! Hope this is encouraging and sorry you are feeling the way you do. I remember it well x
angiepops
Member

Re: Bone mets - please join in

 Hi

I've been diagnosed with bone mets last week, 5 years after primary. Getting anastrozole and zoledronic acid infusions, is anyone else on this?

I keep crying a lot as well, not sure if its shock or the anastrozole. 

Angie

riversidedawn
Member

Re: Bone mets - please join in

Welcome Gill

Sorry you find yourself back here. I don't post often but read regularly and fine these ladies hugely supportive and open with their experiences.

I saw oncologist for scan results yesterday, pelvic tumours remain stable but there is activity in my T12 vertebra tumour. He said it's minor activity and only picked up because the scan I had is very powerful and would not have been picked up on other scans.

I've been on letrozole, ibrance, zometa and triptorelin since January. Oncologist says this could be an indication that the drugs are stopping working.

He's going to switch zometa to denosumab and apply for the cyberknife trial - there's a 50% chance that I get cyberknife instead of regular radiotherapy.

It's worry that the drugs are less effective already as trials indicated they could protect me for up to 2 years.

Gill which of your cocktail dp you put down to SEs as bad as chemo? I'm permanently fatigued and gave found my arthritis pain had worsened on my current regime. What's denosumab going to do to me?

Dies anyone else have experience of my new regime??
gmc
Member

Re: Bone mets - please join in

Hallo Ladies

My bone mets (and lung) were discovered in August this year after I broke a rib back in Dec and it wouldn't heal. Eventually a nuclear scan showed up the secondaries ! I had BC in 2002 and in the other breast in 2014 and am now devestated that this has now happened. My treatment for the last 3 months has been Denos umab injections, Exemestane and Everolimus which I've found nearly as tough as the chemo back in May 2014. I had a ct with contrast scan today and see the consultant next Tues for a comparison to see if the treatment is doing anything positive. I found the BCC forums really supportive before and although I never wanted to be back here it's a relief to read your threads and understand I'm not alone !

Cheers, Gill

 

Flora29
Member

Re: Bone mets - please join in

Thank you all, for your replies. And I’m so sorry you have these bone mets. 😞

I had my scan today, and have calmed down since I saw my consultant last week. I’ll forget it now, until next Monday when I get the results. My surgeon is really lovely, and said that when someone who doesn’t usually complain mentions something, they act. I didn’t go to my GP - I went straight to the BC Nurses at the hospital.

Keeping everything crossed xxx
dragoncarine
Member

Re: Bone mets - how did you discover them?

My bone mets were found accidentally after another unrelated procedure. You are so lucky you're getting scanned. I had gone to doctors severat times complaining of various pains but at no point did anyone suggest it might have anything to do with the breast cancer I had years ago. My pains are quite sharp - like being stabbed repeatedly rather than dull aches. 

 

riversidedawn
Member

Re: Bone mets - please join in

Hi Flora
I was diagnosed with primary in September 2014, 7cm and 2cm tumours with 26 lymph nodes affected.

When I was in hospital in September 2017 for diep reconstruction I had a CT scan because of breathing difficulties, lungs were clear but when my oncologist reviewed the scans 2 months later he spotted bone mets. Why he wasn't shown the scan in September I don't know! The bone mets had probably been there a while.

Hope your scan results are good news x
bonariensis
Member

Re: Bone mets - please join in

Hi Flora,
I didn't know I had bone mets when I had a CT scan investigating gut problems. There was no prob there but mets in my pelvis were picked up. A breast care surgeon had previously told me I was 'cured'.
It's good that your onc is sending you for a scan so promptly. Not knowing is the worst of all. I hope your results show no problems.
Hugs Bon x

nicky08
Community Champion

Re: Bone mets - how did you discover them?

Hi Flora

Some ladies have not known they have got bone mets, I was one of them.  A routine mammogram showed a local recurrence then a subsequent bone scan picked up a couple of mets in my spine.  I now have quite extensive bone mets but that was because I was doing so well a few years back that my regular scans got spread out too much so the changes weren't spotted as quickly as they should have been.  On that occasion I did have a ache in my thigh which felt more muscular than anything but it turned out to be more bone mets.  Some ladies have had a spontaneous fracture, others have reported having aches which were then checked with scans.  It's not always obvious and unfortunately some GPs dismiss a lot of our concerns whereas they should take them seriously especially where there is a history of BC.

I hope your scans do give you the answers you need and that it isnt bone mets.  However you have found the right place to come should you need further support.

Nicky x

Pippin
Member

Re: Bone mets - how did you discover them?

Hi Flora

You may get many different replies to your question, but they are slow coming in. I limped a bit but have limped a long time since an old injury. After the first primary it was assumed to be the tamoxifen. At the second primary I had a CT scan and bone mets were diagnosed then and apparently were from the first primary. 

Your scan will hopefully be reassurring.

Pippin

LYNDYLOO
Member

Re: Bone mets - please join in

Hi everyone

Just thought I would join in regarding the discussion about treatments. The oncologist at the hospital I attend try to get the most out of each treatment so it is more a wait and see approach. Yes there are quite treatments for us but we might run out of options. That is what I was told anyway.

Linda