Bone mets - please join in (Part 1)

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.

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

Pippin and Funnyface, thx for nice welcome, just to add ( mum has axial nodes taken away, bit of hand lymfedenā€¦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. ???

Iā€™ve just had my MRI results and while Iā€™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 wasnā€™t my consultant as sheā€™s away) but he just said again about arthritic changes. Obviously Iā€™m delighted whatever he meant but wondered does anyone know is there any difference? ThanksĀ 

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 ā€¦its easy for them to settle down there and grow ), regards from czech republik stay strong and well

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 painā€¦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 herā€¦

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 )

Thank you Funnyface,
I have questionsā€¦did you was forced to wear kind of shell cos of yours metas in bones ? ( it holds also neck)
ā€¦and if Alozex stop working, will not bone metas elevation till the other start work?

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.

Kate, thatā€™s excellent news, really pleased for you!!
Hugs Janette xx

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 bonesā€¦ 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 goodā€¦ 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

All these emotions are utterly normal and I imagine weā€™ve all had them. I certainly did in March when I was diagnosed with Breast cancer in the bones all at once. Now itā€™s December and Iā€™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. Itā€™s easy to say but we do need to get on with living x

Hi Debbie, sorry youā€™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 Iā€™ve now been on letrozole, denosumab and zoladex for 4 years and have remained ā€œStable Mabelā€ (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 ā€œCā€ rule it!!
Take care hugs Janette xx

To dear Kate21; funnyface; rosie53; bonariensis; Anne30 & ramadeā€¦& anyone else Iā€™ve missedā€¦

Ā 

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

Ā 

My oral biopsy came back as hyperplasiaā€¦so missed the bullet but they are going to be vigilantā€¦

Ā 

Iā€™m still in a lotta pain, but Iā€™m now on Morphine and Gabapentin.

Ā 

Inflammatory arthritis just kicked off in my small jointsā€¦nae gr8 timingā€¦but hey hoā€¦ho, ho, hoā€¦here we goā€¦

Ā 

Love & all good wishes to u allā€¦

Ā 

silverā€¦xxx

Hi All,

My mom had breast cancer in 2008. Then for the past 10 months sheā€™s had real bad pains in her hip. They are that bad sheā€™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 didnā€™t look too bad. After hip replacement sheā€™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? Iā€™ve been trying to research it myself and the outlook always seems pretty grim but after reading some of the posts on here itā€™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

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

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.

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!!!

Silverlining,
For us it was only something little elevation of tumor markers. If doctor dont watch them, mum would have metas without knowing till she receive pain. So happy, that doctor check up because that markers!!! Doctor found it out before pain or other clinical issues come out.

Bonareis, I am so sorry about your pain, i have read that is good to drink sage tee and also have it as a bath.i wish that pain goes away.Exemestane we have no experience, but it should be also gut stuff if that work for almost 3 years!
???