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Bone mets - please join in

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Christmas wishes and good luck to all . Here’s to a great 2019xxxx

Wendy x
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Hello, i just wanted to wish you all a happy Christmas and positive scan results for the new year

Big hugs to all

Ramade

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Thank you for your replies. I hit a wall yesterday when the onc told me I may not be able to tolerate the Paclitaxel; overtired, oversthinking and just plain fed up!
Today I have pulled up my Big Girl Pants and decided to look forward to seeing my gorgeous pocket rocket grandson tomorrow!
In the meantime I am working to manage my breathing and bought a v shaped pillow to help at night. Part of the problem is that my husband works away Mon to Fri, so the nights alone can be scary. He is now home until New Year. I understand now that there are alternative chemos I can try if this isn’t possible. Thank you all, you are a lifeline.
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Hi Jayrand56

Some people have an allergic reaction to one type of chemo but not necessarily another. There is another taxane, docetaxel, which works in a similar way but doesn’t necessarily mean you would react to it in such a bad way. There’s also Eribulin which is completely different and is well tolerated plus of course Capecitabine. Some of these other chemos can’t be given until after another one has been tried. I’m sure there is one (there are more than these I’ve mentioned) that will work effectively without the distressing side effects.

Good luck

Nicky xx

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Jayrand56, About 4 1/2 years ago I had been on gemcitibine for about 10 months. Hubby and I HD gone away camping for the weekend. I was fine Friday when we left. I woke up Saturday morning extremely short of breath. I couldn't even walk a few feet to the outhouse. I was out of breath even putting socks on. We were due to go home Sunday. We packed up to go home and when I went to hug our friends bye we were all crying. Everyone thought I had taken a turn for the worse and that this was it, including me! I had never been that SOB with my lung mets. Monday morning I called my oncologist and he had me come in right away. They scanned me and there was no change in my cancer. I had pneumonitis. Which is inflammation all the lobes of the lungs. He took me off gemcitibine and all treatments for a month. I had to go on O2. In about 3 weeks I was fine, but my run with gemcitibine was over. FF

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I’ve just started weekly a Paclitaxol and also will have bone strengthening injections monthly
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Hi. What medication are you on to stabilize your lung tumors?
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I don’t know if this is the right thread to ask, but does anyone else have experience of a bad reaction to Paclitaxol? I have only had 2 weekly doses, but each time my breathlessness has worsened. Onc thinks it may be the chemo side effect.
I am currently house bound as any exertion sets me off. It is possible that they will bring me in to the ward this weekend to scan for possible clots.
If I have to stop the Paclitaxol, I’m worried that there won’t be anything else for me. I have lungs mets and bone mets on my sternum
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Ahoj Magick. I have a sage bush in my garden. Will try the tea.

Bon x

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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 ) ??
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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😤😤😡🤯
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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!
🐢🍀🐢🍀🐢🍀
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thats exactly what i meant...x

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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.
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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

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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

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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!!!
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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.
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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
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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

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

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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

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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

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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

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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

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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

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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
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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
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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

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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
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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

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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

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

 

 

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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

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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.
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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

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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?
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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

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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

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

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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.....
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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
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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 

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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. 🐢🐢🐢
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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
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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.
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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