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Bone mets - please join in

scottishlass
Member

Re: Bone mets - please join in

Not be on much as busy with funeral, visitors and sleeping. Going to see my Oncologist tomorrow and Tuesday for Zolidronate treatment and chemo pills if Consutant wants me to continue with this chemo. Feel myself that Capecitabine is doing its job for me. Have been out in my tiny garden today pulling up weeds and enjoying the peace I feel there. My husband has been a tower of strength. My daughter is still here and returns to France on Tuesday. My younger daughter has split with her man which is sad but everyone is cheering in the background as we feel she deserves better so she will need a bit of TLC. The funeral went well. My Dad coped and now that the funeral is over he is looking less stressed. Da is coming for tea tomorrow afternoon. I invited him to join us today but he already had his roast chicken in the oven and was doing it the way his grand-daughter had suggested for a change by stuffing it with shalots he had from his brother allotment and puting more shallots outside the chicken to caramelize. Will tell you if it is a success later! I am heading back to bed for a nap as catching up on lost sleep. Hope you are all doing okay my dear bone mets friends. Love Val

belinda
Member

Re: Bone mets - please join in

Hi again L, just my experience but I didn't try Faslodex as I wanted something to kick in quite quickly to, hopefully, stop any progression. This is my first chemo, was diagnosed stage 4 from the beginning, so was lucky not to have to have the usual protocol of chemo at my hospital. I'd had 18 months of Tamoxifen, approx 3 and a half years of Arimidex and Exemestane didn't work at all, came off it at 3 months. I know and meet Marilyn as often as possible..we live quite a distance apart but knew what success she'd had with Capecitabine so I really wanted to give it a go. I'm on 2x2000mgs a day.
Lemongrove
Member

Re: Bone mets - please join in

Thank you Belinda, that's very encouraging information. I'm hoping that Fulvestrant does it's job, but am not dreading Capecitibine quite so much now. In actual fact, having done abit of research on Fulvestrant, I'm wondering if it would be sensible for me to get onto Capecitibine straight away. I'm now thinking that maybe I'm making the wrong move faffing about with more endocrine therapy, when things seem to be progressing and both Letrozole and Exemestane have already failed. The other thing that worries me is that one of the ways Fulvestrant seems to work is by reducing the number of proteins on the cancer cell - so in effect it eventually seems to convert an oestrogen receptive cancer into an oestrogen negative cancer (which is not good news is it?). I guess the answer to this is that my cancer has probably ceased being oestrogen receptive anyway, but I just think if there is any vestige of receptivity, it would be wise to try and keep it (given that oestrogen receptive cancers are generally easier to control).
Any others with experience of Capecitibine?

nicky08
Community Champion

Re: Bone mets - please join in

Well done with your results Lizh, what a relief 🙂 you can do your best to stop thinking about it now until September, which is always a good thing.
Hi LG thank you for your comments about my daughter, I think her actual graduation ceremony will be the emotional bit! However I am still keeping my fingers crossed that all will be well with me as that's not until next January as her uni is classed as specialist or something. Good luck with both of your children's courses and that you will be enjoying it with them. I don't have any experience of Capecitabine (I can't even spell it without checking!) but I know many secondary ladies have had great success with it, as Belinda has already said, so I hope you do too.
Nicky x

belinda
Member

Re: Bone mets - please join in

Hi, I've been on Capecitabine since April 2008, constant 3 weekly cycles. To be honest, for me, it's not been as harsh as Arimidex. I do get the odd persistent heel cracks but hands, stomach fine and no thinning of hair. My bone mets have not progressed at all and it was thought I may have an ovarian met but latest CT showed it to be of normal appearance and CT before that showed as cyst. My TM's are now beginning to rise slowly but I'm grateful for all this time with this chemo. Oh a PS, haven't had a day in bed...up at 6-7am etc, only occasional tired day. Good Luck.
Lemongrove
Member

Re: Bone mets - please join in

Just two more things. Lucinda (Linda), sorry have only just seen your post, so hope you won't think I'm too wrapped up in my problems to notice yours. Just to let you know I'm thinking of you, and hope that the Gabapentin can help you get some rest.
Nicky08, congratulations on your daughters graduation. These milestones are so important aren't they?. My son and daughter are both due to finish their courses next year (my son is an undergraduate and my daughter is doing a post-grad diploma). At the moment I'm going through a bit of a negative phase, and wondering if I'm going to be there, but maybe it will happen.

Lemongrove
Member

Re: Bone mets - please join in

Would just like to pick brains if that's OK. Has anyone had any success with Fulvestrant? Also has anyone had Capecitibine, is it any good, and what are the SE's like?
Just to repeat my background:
Diagnosed with BC Nov 09. MX with lymph node clearance Jan 2010. Skull mets discovered Feb 2010. Had FEC March to August, followed by Letrozole, followed by Cyberknife for skull mets. No progression until Dec 2011, when met at C2 discovered and suspected lung met. Switched to Exemestane, and given palliative rads. Recent scans suggest the suspected lung met is actually an enlarged para-aortic node rather than a lung met, and there has been no further bone progression, but quite a lot of node progression in the chest and neck. Consequently, Prof wanted me to have Capecitibine, but as I wanted to have one last go at endocrine therapy he has put me on Fulvestrant (think I'm a luky gorl, because NICE have recently said it shouldn't be funded due to cost). Anyway, thats my potted history. If anyone can give me the benefit of their experience would be grateful.
Thanks to all.

dawnhc
Member

Re: Bone mets - please join in

So pleased for you Liz 🙂 How good that they haven't kept you waiting for results too.

Dawn
xx

lizH
Member

Re: Bone mets - please join in

Hi Ladies,
Had my scan and appt yesterday and my breast is ok. so pleased and relieved to say the least.
Don't need to go back till September.
love to all x

Mary_grace
Member

Re: Bone mets - please join in

Cromer Sarah, I don't come on here much now but when I do I realise I haven't seen you around much. Hope you are OK. If you ever fancy a coffee just give me a shout! X
Val, so sorry about your Mum. I lost mine to bc 22 years ago. No matter the age and whether expected, it is still devastating. RIP x

cromercrab
Member

Re: Bone mets - please join in

Deepest condolences Val. X

scottishlass
Member

Re: Bone mets - please join in

sorry about mispellings. You will get the jist of it. XX

scottishlass
Member

Re: Bone mets - please join in

Girl's I have read all your posts but ahve no energy to reply properly to them tonight as I am shattered as everyone has been phoning me and waking for information about Thursday. I have just been so busy. Want to send my love to those with worries and wil post when I have found some reserves of energy. My husband has complained that I haven't stopped all day and I have been up sice 7 am. Hugs to those who need one, Much love to my BM friends, love Val

Lucy_BCC
Member

Re: Bone mets - please join in

Hi LizH

Sorry to read that you are having a worrying time, please feel free to call our helpline for further support, it may help to talk things through. Lines are open 9-5 during the week and 10-2 Saturdays and we are here to help

Take care

Lucy

lucinda
Member

Re: Bone mets - please join in

hi Lizcat
I know exactly what you mean about the pain going around to your stomach at the front.I am actually numb around the tummy button area,and have been since dx. I have several bone mets and am totally unable to lie on either side for more than a few seconds and have to sleep flat on my back.If I lie on my side I have pain in my rib cage radiating around the front of my stomach.My onc said it is nerve reaction from the spine that causes this so maybe if your spine has collapsed it is nerve pain from that.I recently had pain from my right hip going down my leg to my ankle and I could hardly walk,had to use a walking stick.Had mri and bone scan but nothing showed up so it has been decided it is sciatica so have added gabapetin to list of pills.It has become better over the last few months but this has coinsided with switching from oral bisphos to zometa.Since being on zometa my pain in the spine has reduced considerably.
Glad you are feeling well other than this problem and hope they find what is causing it.

L xx

EllisB
Member

Re: Bone mets - please join in

Hi Everyone,
Like everyone else - sending lots of love to Val and really happy for Nicky!! Each milestone we didn't think we'd see is so speciall. Thanks to Lemongrove for the advice - I'm not on that pain killer so whatever is causing my confusion isn't the pain relief. My onco says it doesn't sound like brain mets - and she thinks it might have been a mini stroke. I also had a brain haemorrage a few years ago - which sorted itself out and it could be something similar again. Anyway - had CT scan today - and they included my head - so I hope that I'll find out soon.
Lots of hugs to all you lovely bone mets ladies
Chris
x

lizcat
Member

Re: Bone mets - please join in

Hi all,
Still reading if not posting but am after your opinions.
I have spine mets which have been kept under control so far with zoladex, arimidex and zometa. Over the last 2/3 months if I lie on my left side at night, I get a tingling, slight spasm and numbness on my right side between rib cage and hips. The sensation is a bit like feeling coming back after numbness, pind and needles but not as painful. It seems to radiate from my spine round to the middle of my stomach at the front. Not a very good description I'm afraid but hope you get the general idea.
When I last had a scan after a one-off rads blast, my spine had 'collapsed' towards the right so I am concerned it may be the start of more spread but there again I have been on quite a few hols recently and been sitting on planes and in cars for some hours, which can't help but I need my trips away while I can!!!
I am due my next check-up at oncology on July 12th (5 yrs to the day since diagnosis- spooky, eh?!) and have emailed onc's secretary to see if she thinks I should have any scans in advance. With all the recent losses of friends, I think I just need some reassurance.....Otherwise I feel fine and am enjoying myself!!
Take care all,
Liz x

lizH
Member

Re: Bone mets - please join in

Hi Ladies,

Feeling very stressed and weepy at the mo! Have felt my right breast (the one i had my lumpectomy in 07) was not right a few weeks ago, a dent in it and feeling a bit of a nagging pain.
Went to my consultant and have my scan on Wednesday.
Trying to keep possitive but not very sucsessfull 😞
I have had a year of Arimidex and ibandronic acid . I have been feeling really well but now having bad black thoughts that it is back in my breast.
just needed to type something down.
love to all x

golightly
Member

Re: Bone mets - please join in

Hi everyone, really sorry to hear about your sad time val xxx nicky, Thankyou so much for posting something encouraging. It's true, you do need hope and it helps.....really worried to not be here for my son especially, as he is only 8, but chances are I hold be around for a while! Love to all xx

nicky08
Community Champion

Re: Bone mets - please join in

Dear Val
Having been away for a few days I have only just read the news about Mum. Just to say I am so sorry to hear this, but she's at peace now. Will add more on the other thread. Hugs to you and yours though, and take care of yourself.
Talking about exams and celebrating I just wanted to add, especially for any newly diagnosed boney ladies, that my daughter has just graduated from uni 🙂 For me this is a huge achievement for her and also for me as my dx came just as she was in the middle of studying for A Levels and I didn't think I'd even see her go to uni, let alone graduate! But here I am 🙂 I'm not so impressed however with the amount of clearing up and help we had to give her over this weekend as she moves out of her accomodation. Being abroad made it doubly tiring and difficult.
Hope you are all doing well at whatever part of treatment you are at.
Nicky x

geewhiz
Member

Re: Bone mets - please join in

Hi all,

Glad to hear you are coping well Val, but I sympathise with the tablet swallowing - the 500s are huge which doesn't help either. I'm not having that problem myself, but I do feel nauseous in the morning until I've eaten - more so if I'm tired or had a long day the day before - in fact if I can stay in bed a bit longer when the nausea strikes it often passes. I'm a keen advocate of eating well at breakfast, but don't gnerally eat a lot - usually bran flakes with a little yoghurt or muesli with grated apple and orange juice, and I take my tablets with the last few mouthfuls of that. In the evening, I seem to have a terrible memory, and often the children or my husband ask "did you take your tablets" to which the anser is invariably no!. I then take them with the minimum amount of food (a small piece of bread or a biscuit, or last night the best yet - part of a mars bar!!) figuring that I've already had my dinner so should be ok.
I'm losing track of the days here at the moment: our eldest finished her A-levels on Friday, so now am ferrying her to a different house every night for extended celebrations/goodbyes. It's our turn tonight, so at least no driving, and my lovely husband is making a giant batch of curry for them all. Wednesday will be emotional too, as it's the last day of school, and my youngest daughter's best friend is leaving, so we shall be drowning in a sea of goodbyes and tears 😞

Jx

scottishlass
Member

Re: Bone mets - please join in

Hi everyone. I am doing fine. Lemongrove it was your post I spotted re Finty so that is why I posted on here. The last message I saw from her was as far back as April. So your post is out there somewhere. I am stil finding it difficut to find posts on this new improved (not!) website. I am sure I am missing out important letters from friends. Oh how I wish we had saved discusiions back.
Thank you everyone for your words of support. I am not religeous but my Mum was. I have firends who stil light candles from me in the chapel and I have told them to keep doing it as I am stil here! I am touched whern people say they have prayed for my loved ones so thank you Lemongrove and anyone else who has. It feels good to receive such lovely messages and I feel I know many of you really well when we have not even met.....strange but true.
I am doing fine BC mets wise. I have completed (hurrah) 6 rounds of chemo but because of the funeral I am having 2 weeks off the chemo pills but still see my ONcologist in July. I am doing ok on it. Just tired. Feet and hands not too bad and certainly better than the full dosage. I am finding it quite do-able. The hardest bit for me is trying to eat something before taking the pils as I have no appetite and if |I have eaten a few hours earlier I cannot face eating anything else and almost gag trying to swallow wheetabix or whatever. How much do you eat and what do you eat fellow Capecitabine ladies?
Love to you all. Val

han1989
Member

Re: Bone mets - please join in

Hi Val, I have only just started posting as well so haven't had time to get to know any of you but I just wanted to also pass on my sincere condolances to you and your family for the sad loss of your mum.
Look after yourself
Han xx

rozvi
Member

Re: Bone mets - please join in

Hi Val, I dont post all that often but just wanted to send you my condolances at the sad
loss of your mum, they are so special, my mum is having a hard time of it at the moment.
Hope all goes well with your arrangements, look after yourself.
Love Roz xxxx

Lemongrove
Member

Re: Bone mets - please join in

Scottishlass, I'm sorry to read about your Mum. Don't know if you're a person of faith, but I did say a prayer for you in Church this morning (hope that is OK with you).
Regards Finty, I posted a thread enquiring after her a couple of weeks ago, but it seems to have disappeared. I have also sent her a pm, but no respose. I seem to recall Elinda saying she was in contact, but I haven't seen anything from Elinda for a while either. I'm also a bit worried about Laura, as she doesn't seem to have posted recently. Hope all is well for all of them.

myfanwy18
Member

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Val, just like to send my condolences at this sad time.
Claire

Dugsy
Member

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I too had been wondering about Finty, she used to post so regularly & I don't recall hearing anything from her now for months. Any update on her would be appreciated.
Val, hope you are managing to get some rest & that you have all your family with you offering support.
Take care,
Dugsy x

Welsh_girl
Member

Re: Bone mets - please join in

Hi Val,
I wrote to you about the loss of your Mum on Clare's 'surreal' thread. I hope you can find it.
Just wanted to offer my condolences and am glad you're resting a little with your family.
I wrote about that on the other message.

Hugs and strength for the forthcoming week.

Welsh girl x

scottishlass
Member

Re: Bone mets - please join in

Anyone heard from Finty? ot seen her posting but may just have missed her posts in this new set up. Val

scottishlass
Member

Re: Bone mets - please join in

Thank you all so much. I am fine. All arrangements made. Now have a few days ot rest before the funeral takes place. Val

junieliz
Member

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Hi Val, so sorry about your mum, sending you love and hugs junieliz x

vercors
Member

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Val, so sorry to hear about your mum.
Sending you lots of love.

Marilf
Member

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Dear Val - so very sorry to hear about your Mum - sending you and all the family and other loved ones my deepest condolences. And hugs & strength. Marilyn xx

scottishlass
Member

Re: Bone mets - please join in

Thanks Dugsy and Suzanne. I appreciate your words. I am now knackered and heading to bed for a bit of shut-eye. Feel reaaly drained but not worried as everything in place for the moment. My treatment has been postponed so I have 2 weeks off Capicitabine instead of one which gives me time to spend time with my family. One week will make no difference. I am stil seeing my Consultant on July 2nd and she wants CEa and CA125 markers done before I see her. Love to all B M Ladies. ValX

Ramsfan55
Member

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So sorry to hear this news since she seemed to have turned the corner. God bless your Mum.
Thinking about you all at this very sad time.
Suzanne x x

Dugsy
Member

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Dear Val,
So very sorry to hear about your Mum. Sending love to you & all your family at this terribly sad time.
Big hugs,
Dugsy x

scottishlass
Member

Re: Bone mets - please join in

Just a quick message to tell you that my Mum passed away this morning at 10 15 am. Dad and I were with her when she died and it was calm and peaceful. Have now completed all the funeral arrangements and made all the necessary phonecalls to loved ones. My elder daughter is flying home here for a week and my younger daughter is with us tonight. Have a few loose ends to tie up but all is in progress now. I headed off to bed earler for a few hours as I was shattered. I am glad that Mum is now at peace. Thanks for all you kind messages before today. I am fine now but may not be on the laptop for a wee while. No need to post anything as I know you wil be thinking about us at this sad time. Just need a bit of space right now. Much love to all my bone met friends. Val

golightly
Member

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Thinking of you val especially,and all of us this week whatever we face x and good luck lemongrove with your charityx

Ramsfan55
Member

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Wonderful news Val. love to your Mum and Dad x

Suzanne

belinda
Member

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Oh that does sound better news Val...enjoy the garden while the sun shines! Off to look up that novel...I love the title! x
dawnhc
Member

Re: Bone mets - please join in

Hi Val,
Sorry I have come to this a bit late - but so pleased to hear that mum has 'turned the corner' - it is amazing how despite all the problems she has that she does pull round like this :). Glad you managed to find some time to relax today. Take care.

Dawn
xx

scottishlass
Member

Re: Bone mets - please join in

Just a quickie message girls. Thank you for your messages and kind thoughts.
Went to see Mum this morning and she is turning the corner. It is ealy days yet but fingers crossed the injections seem to be helping. A nurse who loves Mum and who Mum loves, fed her a few spoonfuls of yoghurt ( which Mum usually wouldn't eat!) the nurse said Did You Enjoy That? And Mum replied by putting her thumb up and giving a smile. Seems that the doctor has underestimated my Mum! Spoke to her doctor and she couldn't believe that Mum had turned a corner. I came back and had a restful afternoon in the sunshine in my own garden, my favourite place to be. We had lunch there, under the parasol and then I got into the reclining chair and red my book. "The Particular Sadness of Lemon Cake" by Aimee Bender an easy to read novel. Love to you all, Val

han1989
Member

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Val, am really sorry to hear your mum is poorly. Thanks for your advice.
Thinking of you, take care.
Han xx

chrisp1e
Member

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Val - sorry to hear about your mum. I agree it wouldn't be the right order of things for you to go before your mum. My young brother died at 39. My parents are now in their 80s but they've never got over the fact that they're here and he's not. Also it would be difficult for your dad if you both went close together. So it looks you need to hang on to help your dad.
Life is so horrible the way it pans out sometimes and we never know the reason why. Thinking about you and praying you find the strength to get through this.
Take care
Christine xxx

scottishlass
Member

Re: Bone mets - please join in

Thanks Melissa, Suzanne and Lucinda (what beautiful names we have on this thread).
Melissa, I know what you mean. When I was diagnosed at 38 (always said 39 until I realised I wasn't!) my Mum took it very badly and I have photos of us up a hill in Perthshire when I was undergoing chemotherapy and had no hair but was wearing an Indian headscarf. She looked awful and I looked well! I can understand why and I agree when you say it is not the right order of things. Maybe that is why I have held on . Dad is coping better than I thought but she has been ill for such a long long time and we have been here before when we thought that she woud not make it. She has dementia, has had several strokes, has a heart condition, emphysema, thyroid trouble and in the past she had C Diff BUT she has never had Breast Cancer!
I have asked the nurses to call me even if it is in the middle of the night. I have phoned family to let them know what is happening and have even spoken to her sisiter who is in Turkey. I coped okay today but was in a bit of a mess at times. Really drained now and am tucked up in bed already! Love to you all and thanks for your support. Its hard eh? Love Val

lucinda
Member

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Val
So sorry about your Mum.My mum died in 2007 following a stroke and I still really miss her.
Take care.

L xx

Ramsfan55
Member

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Thinking of you and your Mum. God bless her x
Suzanne x

tillycat
Member

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Hi val
I don't know if it's the right thing to say but if the worst happens and you do lose your mum then I think she would be pleased that she went before you
My mum says that it's not the right order of things for a mum to go before her children (she says this to explain why I'm not allowed to die yet:-)
It sounds like she is very much loved by your whole family
Take care
Melissax

scottishlass
Member

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I was called by the doctor in my Mum's nursing home at 9am to say that Mum has taken a turn for the worse and I should go in to see her. She is looking peaceful and calm. I am back home now because my husband collected Dad after dropping me off ( did not want to drive as felt spsced out) and Dad wants to be with her just now and I will go in this afternoon to let him home for a rest and to eat. I have his wee dog here. It is not looking good and the doctor told us it could be hours or days. I have no other relatives here to visit as her sister is on holiday abroad. But I texted her OH to let her know as she asked me to tell her if things deteriorated. So as I said back home and my younger daughter has come round and is going in with me this afternoon. So if I disappear for a few days you will know where I am. I was very shook up this morning after the phonecall but now I feel what will be will be. Love to all Bone mets ladies and thank you Lemongrove and Belinda for your words.

belinda
Member

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Wow I can finally post on the new forums after weeks of not being able to. Val sorry to hear about your Mum and Dad. Just had a quick read through some of the latest posts. I've had bone mets for nine years. I was diagnosed with both breast cancer and bone mets when my hip sponataneously fractured, I was in my early 40's. Had a succesful hip replacement and have since had years of stability albeit on continuous treatment. My last CT shows all is still stable, I have no bone pain apart from occasional nerve pain where I had my hip replacement which goes after 2 Ibuprofen. Ever since my diagnosis in 2003 I've been on bisphosphonates. Still popping in occasionally, good luck to all.