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Bone mets - please join in

2catlady
Member

Re: Bone mets - please join in

Hi,Nicky,I'm praying my lump and markers come down in four weeks and letrozole does kick in. Onc was talking about some protein "thingy" and another hormone. I recon it's the E,E combo some ladies are on. I was ER + when I was diagnosed with my double whammy of primary &mets 7 months ago.
Sorry to say I couldn't get any insurance for USA(it's the USA that's the problem) I got normal insurance from M&S but won't cover any thing to do with cancer. As my onc says they will blam cancer on any claim I make and not pay. So basically I'm covered for nothing.
Huge hugs from a very excited boney lady xxxx
nicky08
Community Champion

Re: Bone mets - please join in

Hi Helen

Sorry to hear the hormones haven't worked for you.  There is a possibility of your BC changing receptor status but I don't know if you have had any biopsies done recently - or are even able to have one done.  If you do now go onto a chemo regime (alot of us are on Capecitabine) this will treat the BC whatever the receptor status is so I hope you get some good response to whatever they next give you.

BTW can I ask if you managed to get travel insurance for the US?  This seems a constant problem for us 'secondaries' with premiums being skyhigh or even no cover being offered at all.  I'd be interested as, although I don't want to go to USA, I want to check out some companies for closer to home ie places in Europe. Anyone else shedding some info on this?  Would be gratefully received and I may try to find the old Travel Insurance thread to get it going again if we have anything to add.

Nicky x

ps enjoy that holiday Smiley Happy

vercors
Member

Re: Bone mets - please join in

Helen, 

Sorry to hear that both Tamoxifen and Letrozole have failed you. 

Enjoy your holiday and I hope the weather will be clement. I was in Tampa for work a few years ago in January, looking forward for some winter sunshine. I was lucky that I had taken my fleece with me to go to the airport, I ended up wearing every day. 

xxx

 

 

 

doodlecat
Member

Re: Bone mets - please join in

Catlady enjoy your holiday. I got six months out of Letrozole before it stopped working. I am now on my eighth cycle of Capecitabine. xx
2catlady
Member

Re: Bone mets - please join in

Hello lovely ladies,after yesterday's onc appointment he is seeing me in four weeks as breast tumour growing,so like tamoxifen it's looking like letrozole not working.two treatments in 7 months ,bloody disease . But for some odd reason bloods that indicate my bone mets are good! Every cloud....
Well I'm off to florida tomorrow with my family so hopefully I can forget about the squatter in my body for two weeks.
Take care and huge hugs to you all,Helen xxxxxx
scottishlass
Member

Re: Bone mets - please join in

hi Ponsmuir and Mema 23 good to know you have been keeping the thread open. 

Scottish Ass indeed! Now that would have been an apt desciption for me a few years ago but I am more of a No Ass Lass now as I have lost so much weight! Smiley Very Happy I am trying to put some weight on now but it is difficult to do. MY OH is a good cook but I just cannot eat as much anymore so it is hard puting the weight back on again. I am only about 8 stone 6lbs and size 10 where before lots of chemo I was a size 14/16.  It is not a good look so be carefull what you wish for because I always wanted a flatter tummy and a smaller bum. Smiley Happy I wish I had a curvier body again, I really do. I am lying flat on my back in bed. Have been reading another Peter James Novel, the crime writer whose series is set in Brighton. I was there many moons ago and would like to visit it again....without the murders though. Night night lovely ladies. Sleep well. LOve No Ass Lass ( for today only!)

Mema23
Member

Re: Bone mets - please join in

Happy New Year to you as well Scottish Lass, I tell everyone you are my role model, you have given me such hope. Xxx
ponsmuir
Member

Re: Bone mets - please join in

Dear Scottishlass (rubbish spell checker again gives me Scottish Ass)
It is so good to read you here. You were such an inspiration a year ago when I had a dx of very extensive bone mets. Thanks for helping me remain positive with the hope that 'a few years' might become a bit more with all the developments going on.
scottishlass
Member

Re: Bone mets - please join in

A Happy New Year everyone. Sorry I have not been on here much but am hoping that I will get back into the routine and visit the site more often.

I know many of you on here so hello to you all, and a warm welcome to all the ladies I do not know yet. 

I have been dealing with bone mets for a lone time now. I first had BC when I was 39 and continued to work for 10 years when I found that I had extensive bone mets in 1999. I have been having all sorts of treatments over the last 15 years but am having a break from chemo just now. 

Just wanted to let you new ladies know that there are long term survivors out there with Bone Mets. 

Will look in here again soon and see how you are all doing. Feel free to ask any questions. Love Scottishlass.

belinda
Member

Re: Bone mets - please join in

Hi again Chris, sounds as though you have a good team looking after you. I hope the pain lessens soon.

And just to add for Coco I agree with ponsmuir's account of rads. I've always had a good response from them and so far they have helped a great deal.

Have a good Sunday everyone, x

ponsmuir
Member

Re: Bone mets - please join in

Sorry to share your worry about stability at the moment. I know how you feel Coco, but we are doing something about it.
I found rads a great help last year and have gone from being bedridden to walking well. Rads certainly reduced the pain considerably.
And yes, the tummy issues sound familiar but they come and go. Hope they will for you soon.
Coco0896
Member

Re: Bone mets - please join in

Hi Ladies, I have been on Denonsomab since August 2013 and had no problems until last month, not with the site, I have it in my tummy but with loose stools, sorry to be graphic, have also experienced more pain and had to have an MRI scan on NYE and may have to have rads, all happening too quickly for me, wanted to be stable for a lot longer than I feel I am at the moment.
Porkie
Member

Re: Bone mets - please join in

Hi everybody, I had bone mets and primary diagnosed in April 2011. I did not have any bone strentheners until last year when I started denusomab along with firstly letrozole then since Sep the EE combination. I usually have the injection in upper thigh or stomach and so far (had about 8 injections) I have not had any adverse reaction. Hope everybody has enjoyed the sunshine today if you have had some - its been lovely in Gloucestershire where I live.x

nicky08
Community Champion

Re: Bone mets - please join in

Hi boney ladies 🙂
I have been having Denosumab since last Feb with no SE's or pain/bruising at the site. The bruising could be caused by the nurse/medic hitting a blood vessel which can happen otherwise, as its subcutaneous they shouldn't be getting anywhere near the muscle etc, unless you're super skinny 😉 I was also having blood thinning injections for a while so have certainly had a few big bruises over the past few months but luckily none from the Denosumab injections.
Smartie, thanks for the support for the scanxiety, as you know we all seem to suffer so I hope you also aren't too worried and that everything shows that Cape is working well.
Nicky x

Steris
Member

Re: Bone mets - please join in

Thanks Belinda, I've had lung mets for 4 years and have a lot of pain related to the pleural area so been on lots if different pain relieve for that.

I was in constant pain to the T5 region and at the beginning of October had a one off blast to T4 - T6 area which was great for 2 weeks before the nag started again. I'm under the hospice so I do have good support and I only have to ask (I go to the hospice once a week for a art class) and I can normally see a pain consultant or will arrange an appointment within a week. I have just upped my OxyContin to 30mg twice a day and I also take pregamblin 150x 3 for nerve pain which allows me to function with paracetamol. I was advised it works more effectively with morphine which seems to help.

I've had denosumab since June as my oncologist wasn't convinced I had spine mets as the lesion on T5 was so small. She ordered a bone scan and results were T4/5 & L1 shown evidence of disease. I've had 9 injections in my stomach and I haven't had any se or trouble with injections. Only problem I had was when I had the faslodex with the denosumab for the first couple of months.

Not seeing oncologist until March but I can always get in touch if pain continues.

Thanks for all your support.

Love
Chris xxx

vercors
Member

Re: Bone mets - please join in

Glad to see that we have more stable mables on here chris and helen. lindseylu, have you discussed with your team, a couple of zaps of radiotherapy might help?

Smartie
Member

Re: Bone mets - please join in

Hi Everyone, seems like more and more of us boney ladies out there. Chris and Lyndsey sorry to hear you are in pain, I was suffering during the latter part of last year and as Belinda said its so exhausting, I couldn't get on top if it all with my GP. Then I asked to be referred to the Macmillan team at my local hospice and the nurse has been wonderful, she advised a change of meds and although I don't want to speak too soon, I now feel far more in control and the pain has lessened - it makes life far more bearable!
Nicky, I am on only my second cycle of Capecitabine ( a newbie!) but have my scan pencilled in for March 7th, like you I already have that scanxiety, keeping fingers crossed it is keeping things stable. Good luck with yours, hope the results are good for you.
Best wishes to all,
Smartie x

Mema23
Member

Re: Bone mets - please join in

Ah right, sorry I confused myself. I only have denosumab which is why my stomach is fine!!
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Not applicable

Re: Bone mets - please join in

Hi I have denusomab injections in my upper arm and zoladex in my stomach. X
Mema23
Member

Re: Bone mets - please join in

Hi Lucinda, do you have your jab in your stomach? I have mine in my upper arm. I have had 5 now and I always get a little bruise but definitely no pain. X
lucinda
Member

Re: Bone mets - please join in

Happy new year to all my boney friends. I have not been on for a while as life has been busy, in a good way.I am now on cycle 8 of capecitabine and will be having a scan next friday, the one after 3 months on cape showed the liver mets had stopped growing and bone mets stable so hoping for more of the same.

 

Just a quick question to the ladies on denusomab, have you experienced any soreness of the stomach? My stomach seems to have become a bit sore and tender ( have had 12 jabs now) and the last but one jab left me with a big bruise. I am hoping it does not become a problem as not wanting to go back to zometa.

 

Lxx

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Re: Bone mets - please join in

Hi ladies, was diagnosed with widespread bone mets in July last year and haven't been on this site since. I used the site when first diagnosed with BC November 2012 for about 6 months but fell away from it and used FB sites.

So thought I would join this thread, I see I have lots of reading to do to catch up with all of you's lol

I am on hormone treatment and bone strengtheners at the moment with painkillers coming out my ears.

Suffering from a sore pelvis, feelings like my butt so sitting for long is not an option.
Any tip and advice would be great with living with bone mets.

Look forward to keeping up to date with your journeys xx😊
Chris007
Member

Re: Bone mets - please join in

Hi All - I saw my Onc yesterday and for the first time since diagnosis in July my tumour markers have not risen. Scan in 2 weeks will hopefully show stable disease. A fantastic start to 2014.

Good luck to all you ladies out there.

Chris x

belinda
Member

Re: Bone mets - please join in

Great news of your shrinking tumour Helen. I still have mine too. Very small as well. x
belinda
Member

Re: Bone mets - please join in

How long ago did you have the blast of rads Chris? So sorry to hear it's not helped. Does the Oxycontin deal with the pain for a few hours or not at all? Would Amitriptyline be worth trying? Pain is so exhausting. At my hospital the pain clinic is part of Oncology and the staff have been so patient and caring for me in the past. Have you seen anyone at your hospital clinic? Hope you find something that helps. I was in a bad way with pain Autumn 2012, life was becoming impossible. I'm in such a better place now and I hope you will be too, very soon..x

Hi Nicky, argh scanxiety, the waiting is awful, I hope you will find Cap is still doing a great job..x

helen44
Member

Re: Bone mets - please join in

Happy New Year to everyone, hope all your treatments are going well for you.

 

Madge, I had the double whammy primary & bone mets diagnosed the week before Christmas 2012 aged 44. Ask if you are able to have denosumab for the bones - it's a quick injection once a month & the chemo unit give me Calcichew tablets as well. I have had 13 injections so far without any side effects so consider myself pretty lucky! No surgery undertaken & my primary tumour has halved in size over the last year. Also on Zoladex & Tamoxifen so get the night sweats though!

I get lots of hope from this forum - it keeps me sane in moments of anxiety.

All the best, love Helen x

nicky08
Community Champion

Re: Bone mets - please join in

Hi

It's lovely to see some of the 'old' faces on here - well, you know what I mean Smiley Very Happy

Hope that any changes to treatments work well and we all get many years, like Belinda.  At the moment I'm still on Capecitabine, which I started back in Feb 2013, but scanxiety will be rearing it's ugly head soon as a CT scan is planned to see if it's still holding things at bay.

Good luck to everyone and hope the pain gets under control, Chris.

Nicky x

Steris
Member

Re: Bone mets - please join in

Hi ladies,

It's the first time I've posted on the bone thread as normally on lungs but since spreading to t5/6 & L1 I've had a one off blast to t4 - 6 which worked for a couple if weeks but since the I'm still in pain. I've up the OxyContin to try and alleviate the pain. Is this something I'll have to deal with as last scan in November reported stable?

I found that really interesting that Arimidex that's kicked in again. Good luck with that Belinda & Liz. For me at present faslodex and denusumab seems to be holding things stable.

Happy New Year to everyone
Love
Chris xxx

belinda
Member

Re: Bone mets - please join in

Thank you for the kind words. I try to let others know I'm still here and taking all the common treatments. When I was first diagnosed I looked for evidence of patients living longer and sometimes it was hard to find. I believe many of us are living longer but perhaps most of us only post if we are having problems. Perfectly understandable. Smiley Happy x

Hi Liz, sorry to hear you are having back problems. I hope one day, like me, you may find Arimidex effective again. Like you it worked well for me for 4 years before failing. 2004-2008, now I can hardly believe it's kicked in for a second time and it's working all over again. I hope things are easier very soon..x

ponsmuir
Member

Re: Bone mets - please join in

Belinda,
Thank you for being such a faithful member of this forum and for giving us relative newbies such inspiration in the roller coaster of this experience. It really helps to hear that if one treatment stops working, another is available and you just have to work through the darker moments of uncertainty. Glad you're marching on with great courage.
lizcat
Member

Re: Bone mets - please join in

Belinda - lovely to hear from you and that things seem to be going as well as possible. You give me hope following your progress! My back has been playing me up again recently and there appears to have been some spread in my spine so I am waiting for an mri next week and then see onc to see what to do. May be vertebraplasty or rads and probably change in hormones - after 4+ yrs on arimidex then a year on exemestane with everolimus, think the Cancer needs fooling again!! 

 

Good luck with treatment, everyone.

madge1
Member

Re: Bone mets - please join in

Hi

Lovely ladies, you have made me feel much better already with your inspiring stories, support for each other and courage!!!! I have taken onboard all of what you have said and even my partner said he felt inspired by you!!! When I see the onc. on 10th feb I will ask re: bisphosphonates, I think he wants to see if the Letrozole has any affect on my bc. Thank you all again.

Julie

2catlady
Member

Re: Bone mets - please join in

Hi,Belinda and happy new year to you and all the ladies.Lol at car window xxx,yes I'm having hot flushes. Wearing T shirts !! Heating is constantly being turned off or I'm sitting in garden in cold in a t shirt lol. At least heating bills should be low this year.
Hope you are keeping well ,glad you posted for Madge xxxxhuge hug,Helen xxxxxxx
Chris007
Member

Re: Bone mets - please join in

Belinda and Lynn

Thank you - what uplifting stories to start the new year. I'm still waiting to find the right treatment for my mets (diagnosed in July). Have had 2 rounds of capecitabine and will have tumour markers done on wednesday and see ONC for results thursday. Such a rollercoaster - one day I'm positive it's working then the next convinced it's spreading. Last appointment I found it had gone to my liver but very subtle lesions.So far no real sideffects from chemo but finger tips beginning to feel strange - may be my imagination as you get to expect these things.

A Happy Healthy New Year to everyone.

Chris x x

Lynnq
Member

Re: Bone mets - please join in

Hi Madge. I started letrozole on the 30th November 2012 and had my first Zometa infusion on 22 February 2013 so it was getting on for 3 months later. Denomusab was just being introduced then and my onc suggested that, but 'they' wouldn't fund it. Anyway i had good results from the letrozole with a huge drop in my tumour markers so they knew then that it would be an 'ongoing' treatment and commenced zometa every 4 weeks.
14 months later and there had been no further spread and some of the mets have gotten smaller and showed signs of healing.
I do not have hot flushes at all but I do have achey joints and use painkillers which help.
My tumour markers have continued to fall.
I remember after Christmas last year wondering if I would see Christmas again and here I am, having just put away the decorations and bought some new ones in the sales for next year, fully intending to hang them on the tree.
belinda
Member

Re: Bone mets - please join in

Hi Helen, 2catlady, are you having many hot flushes? I'm having quite a few at the moment. Driving around with the car windows open. Woman Tongue x

belinda
Member

Re: Bone mets - please join in

Hi again Madge, I had about the same wait for my Onc appointment. It may be down to the hormonal you're taking needing on average about 12 weeks before blood tests can see if it's working well for you. I've also been on bisphosphonates (for bones) for many years like everyone else here but I think I remember having a few months between diagnosis and my first infusion. x

belinda
Member

Re: Bone mets - please join in

Hi all and Hi to Madge and any other new ladies. I haven't been here for a while but thought I'd drop in tonight and, I hope, share some good stuff especially for anyone newly diagnosed. I was diagnosed stage 4 from the start in 2003. Since then I've had long periods, years at a time of stability. The mets have never gone away but they have decreased in size, bone mets have shown healing. But there have also been times when a new area have popped up on scans and it's something I still struggle with and I have to take a while to pick myself up again. But we all, somehow do carry on and hope for the next treatment to be easier, better. I don't have any secret diet, I don't follow any enlightening theories I just take all the usual treatments, both hormonal and chemotherapies. Since my diagnosis quite a number of new treatments have become available and I hope there's more to come in the pipeline.

I was diagnosed in 2003 when I had a spontaneous hip fracture and bone mets and breast cancer were found and diagnosed together. I was just into my 40's and I left hospital with a new hip and Tamoxifen. (The new hip is ten years old and still great I just use one crutch.) At that time I thought I had 2 years tops left to live. Moving onto Christmas, 2012 and I was having another tough time, I was in a lot of pain as some nerves were being squashed (there's probably a better, medical word for it) and I had to have some emergency radiotherapy to my spine due to a met causing some serious trouble. I started 2013 in a fog of strong pain killers and with a new chemotherapy. This New Year, my hair has all grown back, I have no pain and a hormonal (Arimidex) that last worked for me in 2007 has been working all over again since early last Autumn. My tumour markers are completely back in the 'normal' numbers for anyone with no cancer. If one treatment doesn't work there will be another that does. No-one can feel positive all the time. Be kind to yourself. I've had a long time with this and I still get butterflies, anxious, tearful waiting for scan results. Good Luck to everyone reading this. x 

JulieD
Community Champion

Re: Bone mets - please join in

Hi Madge,

Sorry you have joined the gang but be comforted by the fact it's a great gang full of caring knowledgable women.

It is very hard to take on board and will take time to adjust to the whole cancer idea let alone the secondary whammy!! It doesn't matter how well supported you are, sometimes you just need to 'talk' to the only people who can really 'get it', others with mets.

I had bc in 1999 and was dx with bone mets in 2010 so coming up to my 4th anniversary in a couple of months.

I'm on Leterzole like you and get the hot flushes and aching joints but will put up with that as it's keeping me stable. I also have Zometa a bisphosphonate which most bone women seem to be on, or something similar like Densunab. If you are not on anything like that it might be worth bringing it up at your next onc appt as it is meant to help strengthen your bones.

 

Hope everyone is getting on ok with treatments.Lots of love xx

2catlady
Member

Re: Bone mets - please join in

Hi,Madge,I know what you mean family and friends are very supportive but talking to people who are going through the same emotions as you are feeling helps. Yes,do ask about the zometa it's an IV drip given every 3/4 weeks for bone mets. It helps strengthen bones and at the moment touch wood is keeping my bone mets in check. It seams ages for you to have to wait to see your onc at this early stage. I hope you have a breast care nurse you can contact. Mention to her about the zometa.
Huge hug,Helen xx
madge1
Member

Re: Bone mets - please join in

Hi 2catlady,

Thank you for your reply, it really does help to read that there are other women going through similar emotions to myself. I am trying to be positive but it is very difficult and I know that it is the same for family and friends, who have all been very support, but sometimes you need to talk to someone who is actually going through this!!!!! Seeing the onc. in Feb seems forever and I'm on countdown. I've been taking the Letrozole for over 2 weeks but they have not prescribed any other drugs. I have bought fishoil+multivit capsules to take for my bones but will ask at my next appt. Luckily I don't have much pain, just the normal aches and pains which I put down to my job!!!! Thank you again and a big hug to all you ladies Xx

2catlady
Member

Re: Bone mets - please join in

Hi,Madge,so sorry you are having to join us but the ladies on here are wonderful and full of knowledge and support. I was diagnosed with primary and bone mets at the same time seven months ago. I was on tamoxifen first but that didn't work so I'm now on letrozole and zolodex injections to put me in menopause.
Are you on zometa for your bones ? As I would think all us boney ladies are on that to keep bones strong.if not make sure you ask when you see your onc.next.
There is a wonderful lady on here how has been living with bone mets for 10 yrs and still going strong,and is a great support to us newly diagnosed ladies.
Another lady advised me to right all my questions down before I see onc.and this was very helpful. You can give list to hubby,partner,friend etc.to ask if you wish. My hubby does that for me.
Please take care and keep in touch,huge hug to you,Helen xxxxx
Jo_BCC
Member

Re: Bone mets - please join in

Hi Madge1

 

Welcome to the Breast Cancer Care discussion forums, you've come to the right place for some good, honest support from the many informed users of this site.

While you are waiting for replies, I have put for you below links to some of BCC's publications you might find helpful. Also our helpline team are just a free phone call away, 0808 800 6000 lines open Mon-Fri 9-5 and Sat 10-2

 

http://www2.breastcancercare.org.uk/publications/secondary-breast-cancer/secondary-resource-pack-bcc...

 

http://www2.breastcancercare.org.uk/publications/secondary-breast-cancer/secondary-breast-cancer-bon...

 

Also, you might find helpful our Secondary Live Chat service which runs each Tuesday evening for an hour between 8.30 and 9.30 pm, here you can 'talk' in real time with others who have secondary diagnosis.  I have put the link below for you to have a look at.  You'll be made most welcome if you would like to join in.

 

http://www.breastcancercare.org.uk/community/chat

 

Take care,

Jo, Moderator

madge1
Member

Re: Bone mets - please join in

Hi

I am new to this !!! I was recently diagnosed with grade 2 invasive ductal breast cancer involving lymph nodes in my left boob and DCIS in right boob, the end of November 2013, from there I was sent for MRI, CT and Bone Scans which showed hotspots on my 9th rib and L2. I had a biopsy on my rib and was told I had bone secondaries the week before Xmas. I have been devastated since this diagnosis as I was just getting my head around having breast cancer!!! I have started Letrozole, as firstline treatment, and have been taking this for just over 2 weeks, with side effects!!! Next seeing oncologist in February. Any advice would be a great help.

Thank you

Itiswell
Member

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Thank you JulieD, I will be speaking to team again shortly to see what can be done as per the ovary removal. I hope I get some comforting news.

Rowan44
Member

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Thank you Julie D x fingers crossed again then 🙂
Rowan44
Member

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Thank you vercors , I am feeling calmer now and your response has given me hope , its wait and see time again
JulieD
Community Champion

Re: Bone mets - please join in

Itswell, sorry you lost a friend recently particularly when it seemed she was doing well, it is very hard to accept the unpredictability of this horrid desease. I' have no answer for you re the ovary removal, have you talked to your team about the possibility of more children? I had my ovaries remove several years ago and it was quite a simple procedure with just an overnight stay.

 

Rowan, I'm really sorry to read what a rotten appointment you had, you must be reeling and feeling very lost and anxious at the moment. It is good that your team are being thorough and I really hope it turns out to be 'just arthritis' or something simple. It's pointless to tell you not to worry because you can't help it but I always try to hope for the best but prepare (as much as is possible)for the worst. Seding positive vibes and strength your way, CT scans can and do show up things that are not cancer.

vercors
Member

Re: Bone mets - please join in

Hi Rowan,
sorry to hear you are worried.
I recently had a scare when I found a lump on my sternum. After CT and MRI I was told it is arthritis.
I hope it turns out to be nothing.
Xxx

Lucy_BCC
Member

Re: Bone mets - please join in

Hi Rowan

I am sorry to read of your new worries, don't forget our helpliners are in tomorrow 10-2 if you need to talk and 9-5 during the week on 0808 800 6000

 

Take care

Lucy BCC