Bone mets - please join in

[rosie53]

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]

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]

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]

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]

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]

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]

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

[funnyface]

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]

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]

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]

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]

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]

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]

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]

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]

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

[Magick]

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]

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]

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]

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]

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]

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]

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]

 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]

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]

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]

Hi anne30

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

Angie x

[gmc]

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]

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]

 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]

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]

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]

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]

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]

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]

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]

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]

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]

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

[Flora29]

Not sure I’m quite in the right section, but I am wondering how those with bone mets discovered they had them?

I’ve just been back to clinic today after I called my BC nurses and mentioned I had a tender spot on my collarbone. I will be getting a bone scan in the next week or so, back to see consultant in 2 weeks.

I had an MX and full lymph removal 9 years ago. And a WLE on my other boob 1 year ago.

Not sure if I am just being paranoid and over sensitive and whether to worry or be reassured that consultant has referred me straight through without question.

So, am curious about how you found yours?

[Lynnq]

Hello everyone

I was diagnosed with bone mets almost 6 years ago just 7 weeks after my primary diagnosis.  Also had shadows in my peritoneum .  I went onto Letrozole and Zometa which kept me stable for about 5 years then my TMs started to increase - scans showed more obvious infiltration in the peritoneum but my last scan also showed some differences in my lower back and the Onc told me that he suspected infiltration in my bone marrow.

I was put on cape and have just started my third cycle and my blood results have been very encouraging.  I didn’t ask much about the bone marrow suspicions and am wondering if anyone here has any experience of this....or can point me to a site that has some information.

I am finding that I have lower back pain and am wondering if that is the cause.  Have an appt with my GP next week to ask about pain killers.

xx

[ramade]

Mrs timps, sorry you've had to join us but you will find this forum amazing. i can only tell you that when my scans are looked at and there is any progression at all my treatment is changed. Do you have a sympathetic gp or a breast nurse you can talk to?

big hugs

Ramade

[funnyface]

Mrstimps, Some drs are more aggressive than others. They also go by how you feel. My oncologist will go and look at the scans herself if she isn't sure. If you aren't comfortable with this maybe a second opinion would be good. FF

[Mrstimps]

Hi Ladies,
Myself and my mom read the forum alot, shes not confident on posting so i said i would for her. She has mets in her lungs and bones, been on letrozole for the last 2.5 years and her latest scan has shown some progression. What we cant get out heads round is her consultant isnt changing her treatment yet and scanning her again in 3 months. Has anyone else experienced this? We aren’t sure wether to push for another opinion or trust that the docs know what they are doing, any advice appreciated x

[ramade]

Hi Linda so pleased for you that is great news. last time we talked we had both started on e/e,didn't work for me but glad you had a fair time with it. i imagine taxol is chemo, i recognise the name as a heavy 6 month dose years ago after my primary.Hope things keep going in the right direction for you.

love and hugs

Ramade x

[rosie53]

Yeyy fantastic news Linda!
Hugs Janette xx

[bonariensis]

Brilliant news Linda, so pleased for you.
Bon x

[funnyface]

That's great news Linda! Very excited for you. Go celebrate! FF

[LeighL]

Following a meeting wth the surgeon yesterday, it now seems that she would definitely like to do surgery in the New Year! Am currently gettng herceptin injections which are working very well, but she doesn't want to leave me undefended should I need to stop the herceptin for any reason. Surgeon and oncologist seem to have different opinions

[JWD]

Great news Linda.🤗🤗