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

Re: Bone mets - please join in

Ahoj Magick. I have a sage bush in my garden. Will try the tea.

Bon x

Member
Posts: 22
Registered: ‎10-12-2018

Re: Bone mets - please join in

I need to deeply apologise, my message was for Silverlining, not Bonareis.
Bonareus, so happy, you do well and all is stable! Thank you, that you have been here for us with all your support. May i kindly ask you, what you having for problems, insurence in UK ( i asume you are from Uk ) ??
Member
Posts: 22
Registered: ‎10-12-2018

Re: Bone mets - please join in

Silverlining,
Even we ( mum and I ) are from czech republic, inbetween scans is not a really support. Mum has got me, who goes with her, does silly things make her smile and study internet to have at least some answers for her questions....bit sad, that the system as soon as they have not tax paid from you, they somehow quickly forget that you was here for the system for many years...make ne angry, system sucks😤😤😡🤯
Member
Posts: 22
Registered: ‎10-12-2018

Re: Bone mets - please join in

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!
🐢🍀🐢🍀🐢🍀
Member
Posts: 156
Registered: ‎19-11-2015

Re: Bone mets - please join in

thats exactly what i meant...x

Member
Posts: 22
Registered: ‎10-12-2018

Re: Bone mets - please join in

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.
Member
Posts: 156
Registered: ‎19-11-2015

Re: Bone mets - please join in

Just a lil' question...my onco. never uses tumour markers as he does not believe in them.....may i please have your feedback on this one?

 

How many of you feel supported in between scans?? I believe there is work in parliament on raising the care of 'all' secondary cancer patients.......not very festive...ooopsie..xx

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

Re: Bone mets - please join in

Hi Magick and Butterfly

Welcome to the forum. I had primary bc in 2009 and was treated with radiotherapy and tamoxifen. 6 years later mets in my pelvis and skull were discovered during an investigation for something different. I was treated with exemestane which worked for 2 1/2 years but I'm due to start capecitabine after Christmas. I had some difficulty persuading my consultant that ex wasn't working any more. Lots of women have the same problem. We know our own bodies. 

You mums are lucky to have your support

Bon xx

Member
Posts: 22
Registered: ‎10-12-2018

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!!!
Member
Posts: 22
Registered: ‎10-12-2018

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.
Member
Posts: 22
Registered: ‎10-12-2018

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
Community Champion
Posts: 4,293
Registered: ‎01-05-2012

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

Member
Posts: 7
Registered: ‎16-12-2018

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
Member
Posts: 156
Registered: ‎19-11-2015

Re: Bone mets - please join in

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

Member
Posts: 321
Registered: ‎30-09-2017

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

Member
Posts: 232
Registered: ‎30-03-2017

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

Member
Posts: 156
Registered: ‎19-11-2015

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

Community Champion
Posts: 4,293
Registered: ‎01-05-2012

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

Member
Posts: 156
Registered: ‎19-11-2015

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

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

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