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Bone mets - please join in

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Re: Bone mets - please join in

Awww ditto Helen, the thought of leaving my babies (23 & 26) tares me apart!!! We are so close and are best friends.....its heartbreaking 😞
hugs Janette x x
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Hi Helen thanks for the advice I am on ee and I know this effects liver and i did have hepatitis  years ago but onc didn't really take any noticeof that although it is mentioned in the se. I think i will ring my breast nurse today.. a good idea thanks. I know my oh will be fine but it would just be  great for him to have something nice for a change, he is looking after his 88 yr old Mum and 79 year old Auntie  and me so many hosp trips lately! Reading how you feel about your son I can sympathise,  my daughter rings me at least twice a day , used to be three! We are close but I have a dear Sister she is close to and lives near, It is a great comfort to me knowing they help eachother and she will be there when I'm not ....anyway thinking too far ahead should be taking each day at a time right?

 

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Thank you ladies xxxxxxx Belinda ,I think exactly the same as you as I'm very close to my son and he comes to me with problems and worries. I worry about him having no brothers or sisters to talk to and hasn't told any of his friends either.

When I was discussing my prognosis with macmillian nurse (as we know is pants now.) She asked me if I was scared of dying or scared for the things that I'll miss out on.
And yes,it's the things I'll miss that plays on my mind and terrifies me. I have asked him to promise to take any grandchildren to Disney.( dad will pay lol)
Huge hugs ,Helen xxxxx
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Hi,Edwina, please never apologise,we all understand you are not complaining,you are asking for advice xxxxxx.
you do need to call ward if you have a high temp as you may need antibiotics. But sooner rather than later. Are you on the EE combination as that has some nasty SEs. Or are you on capecitabine.
You certainly are not spoiling OHs holiday as he will want his wife well and that will be first on his mind.
Huge hugs,Helen xxxxxx
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Hi everyone,  sorry can't seem to get to the treatment thread not sure if this is where this question should be . but feeling lousy at the moment and need a bit of advice. I am feeling sick and exhausted, with high temp.  onc said my liver function was not quite right after latest blood test and has cut the dose of my pills. I guess this is why I feel like this but I am supposed to be going on holiday in a week's time , typical!  Anyone had this? Stopped my pills for a few days any idea if I will improve soon? My oh is so looking forward to the holiday , sorry to complain as I know lots of you have a lot worse. My oh is so wonderful to me I really don't want to spoil his holiday .

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It's so hard - I can't think of my daughter in the future without turning into a blubbering wreck x
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Oh Helen and Belinda this is the true pain that dare not speak its name .
Sending everyone my love and understanding. Marie xxx
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Oh Helen there are no words. My daughter always comes to me first if she has any worries, she did today and I'm thinking who will she speak to when I'm not around? Not easy. I do feel here, thank goodness, everyone understands though. X
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Belinda ,thank you . Yes,he's 21 but still my baby.👶 I think it's the thought of not being there to see him marry or have children that breaks my heart so much. 💔But at least I'll see this special birthday with him. Yes,three glasses sounds good lol.🍸🍸🍸 hee hee.
He went with his dad (real hubby number 1) to pick a car yesterday.
Xxxxxxx

Marie,there will be no Barbara Windson uniforms,tut tut. We are now married in a quicky ceremony we had this afternoon. All my other hubbies were bridesmaids with matching aprons. 💏💍.

Lynn,I sympathise with you and pain as it wears you down so much xxxxx

Well I'm off to sleep ladies as shattered. One good thing the concoction of drugs I'm on knock me out,shame they don't work on pain. Huge hugs,Helen xxxxx
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Ah Happy Birthday to your son Helen, for some reason I thought he was mid teens, whoo 21 ! 🙂
Enjoy the happy day and have a glass or three. X
Hope everyone has a peaceful weekend...Thursday and somehow I've got into weekend mode. 🙂 x
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Hello everyone, it's been a busy day on here hasn't it?
Welcome Tricia.. How awful that they haven't told you where your secondaries are, they were a bit vague with me when they first told me I had spread, but they did indicate the area...we never get used to the waiting game.
Funnyface my youngest son gets married on the same day as your daughter. I am hoping to lose a little weight before looking for a new outfit, i know exactly what I would like so perhaps I should also think of having something made...I remember last year saying that I just hoped that I could dance at his wedding.
Janette have a brilliant time in New York, the two weeks will fly by I hope and the time away will seem like ages.
Helen hope the ONC at the Freeman uses some authority and gets you sorted...someone needs a kick..

I am feeling a bit better today had a few days feeling down with awful shoulder and neck pain but the stronger pain killers are kicking in now, it's a trapped nerve and slthough it is painful I prefer that diagnosis to the one which I was scared of getting!
Hope everyone else is as well as possible..take care

Xx
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Oh,Belinda ,that's him. I better get a ring on my finger before Marie sets her naughty eyes on him. 👰💍 lol.
There will be no bed baths for my new hubby from Marie in her matron outfit .lol.

No, I haven't been on ketamine,nobody has mentioned it . Not sure what it is (I'll google it.) .
The doctor at the Freeman rang to see how I was getting on after rads trial for my SCC . I told him I was in a lot of pain and I'm waiting for CT. Apparently request only went in on Monday after seeing my onc last Thursday,typical !so he's going to chase it up

Oh,Janette,I bet you're soooo excited only two weeks,yippeeeee and I can use more of my strange pictures now🇺🇸✈️🗽🍔💵🚖 to decorate post.
Haven't a clue where they came from. Some upgrade gave me them lol.

Oh,FF,a wedding how fantastic 💒👰❤️💍💎
. I love the comment about raising the perfect man for her about your son,that's lovely for a mum to here.

I've only got one son and he's 21 next Friday,I'm so excited I'll be there to see him celebrate it.🎂. I may even have a glass of bubbly 🍸or two🍸🍸!

Huge hugs,Helen xxxxxxxxx
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Good afternoon Helen, just doing my rounds. How is the pain ?
I have googled Mr Bison , may have to swop Hattie matron uniform , for a Barbara Windsor nurse one . Marie xxx
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Funnyface.....lol i bet my post made you chuckle this morning!! What am i like....i blame the mediation 🙂 wow you have hit some mile stones,well done you. I pray i will see my daughter get married and have a family, shes 23 and has has been with her bf 4yrs but wedding plans as yet.
Well just been to collect my tickets for New York...yipee, 2wks today i will be on that aeroplane!
Hugs Janette x x
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Helen I have been a googling. Is the new husband Yannick Bisson? He's Canadian and was born in 1969. If Marie visits, in her Hattie Jacques uniform, do not leave them alone together. I'm still recovering from the Poldark Carry Ons. X
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Sorry to hear chemo took it's toll FF. I felt very similar on this weekly Paclitaxel I was on. On a break at the moment but fairly shattered. Hope the wedding will help keep you upbeat, so nice to have happy things ahead. X
Sorry to hear pain is still constant Helen. Have they tried Ketamine, it sounds such big guns stuff but a couple of ladies I know were on it for a couple of years. X
Keep in touch Tricia, we are a supportive bunch. X
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Natalie, lol not me getting married .......my daughter......Ive been married 33 years! I'm going for fitting for my dress and her gown! Wedding is Aug 29th. She was 9 when I was dx with bc...and was 19 when I was dx with mets. She is 29 now. I never thought I would get to see her get married. My 20 year m ark for bc will be in Oct. and 10 years for mets in Nov. My next goal is to see a grandchild. She wants to get pregnant next summer so grandchild I hopefully abiut 2 years away. Just hoping I can make that. I have 2 sons but one isn't in a relationship. Seems he wants to stay single. The other one is living with gf, they don't want to get married or have kids. I laugh at them not wanting to get married. He always wanted to get married before, but he always goes with what the girl says!! Funny thing is she told me that she never had the desire to get married and is OK not getting married, but would say yes if he asked. Says I raised the perfect man for her. I'm quite happy with that!  Funnyface

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Supported to say Kaye, stupid predictive text x
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Kanye, your in Wales ? So am I, where are you ? And where you treated x
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Hele so sorry you're still in pain huge hugs to you xx
Tricia sorry you've had to join us but you will get lots of support from the ladies on here they are all amazing and once they get your treatment in place you will feel a bit more positve xx
Hope everyone else is doing ok ,not avery nice day very wet and windy here in Wales.
I'm just off to sit with my mother in law for a few hours.
Take care all
Kaye xxx
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Aww Helen, so sorry you are STILL in pain 😞  sending you a GIGANTIC  hug 

Janette xxxxxxx 

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Lol,Marie xxx
I'm just the same unfortunately. But on a good note the steroids are controlling the sickness and I feel like eating. Lost 7kg on Eribulin as had no appetite and very nauseous.
Oh,I've also got a new hubby,I think he's my fifth ?! I've lost count now ! 🍸🍸
It's the man who played Murdock in murdock mystery series.🔫🔪🔬
(strange name,I'll have to google it) oh,he's a handsome one. You can tell I'm spending a lot of time in bed watching TV lol.
Well I better go as pain is being a pain and I've got a straw in Oramorph .
Huge hugs,Helen xxxxxx
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Whoops sorry Tricia.....flipping predicted text 

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Good morning Ladies,

Helen , how are you ?  I have my Hattie Jacques' matron uniform pressed and ready to go for a visit. Please tell your onc if he doesn't sort it out I will give him an ice cold bed bath !

I will check on you later.

Marie xxxx

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Morning ladies,

 

Funnyface, I didn't know you are getting married, when is the big day??? How exciting for you!! : - )

 

Trick a,  welcome to the forum, sorry you have had to join us though, as Helen has said unfortunately there is no cure for secondaries but there is a whole lot of treatment out there and it can be managed for many years, sorry you are having to wait for answers......Unfortunately this is something we secondary ladies have to put up with ie waiting for scans, results and appts. Hope you get some answers soon and they get you on a treatment plan. 

 

Hugs to all Janette xxxx 

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Hello,Tricia,of course you can hang out with us. We are a very friendly supportive bunch.
The waiting is the hardest and we all know where your coming from.
That's shocking that they've said you have SBC and not said where it is. Can you ring a bc nurse and ask.

I'm sorry to say if it is SBC it can't be cured but can be treated and controlled sometimes for many ,many years. You will be put onto treatments for HER2.

There are lots of lovely ladies on here that have a HER2 Cancer and are living,working and getting on with life ( still not sure if ironing is getting on with life! I'll look at rule book )

Come and chat or ask any questions . The ladies on here are wonderful and I consider them all as friends.
Huge hugs,Helen xxxx
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Hello lovely ladies can i hang out with you on the bone mets threads

 

I have stage 3 HER2 pos bc and i have had a lumpectomy and full node clearance removing 18 positive nodes. Been told i need a further op to achieve a clear margin. Clear bone scan

 

Today however was told CT scan not clear and secondaries and got to wait for bc consultant to have a multi disciplinary meeting Monday to discuss me.   So they left me not knowing where the spread is which is a terrble place to be. 

 

I just want to know whether they can treat it or control it

 

Looking for friendship on here from others going through the same

 

Tricia xxx

 

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Helen ...Gosh I wish they would get your pain sorted!!!I don't know how you are able to handle it. 

 

Kate....sorry to hear about your MIL....it's nit ea s letting go!

 

Belinda...I've .been really busy at work and with some family things. First fitting for my dress and her gown this Sunday. I'm ok but not my best. Neulasta took its toll on me this time. Very SOB on it, fluid retention, and bone pain, and sore throat. I wanted to throw in the towel!

 

Trying to pull myself together! Funnyface

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Great to hear your good news Kaye. Hope you have a good sleep and carry on celebrating tomorrow.
The usual game of hunt the vein for the cannula this afternoon even though oncology nurses do it - my veins obviously objected to coming home from a lovely holiday.
LD x
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Thanks for getting back to me Kaye, hope you sleep well with those feet and hands x
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Hi ladies thanks for all your good wishes ,Mil still hanging in there at the moment just spending as much time with her as we can,we're all doing shifts at the moment ,just got home after being therefor a few hours.
Helen hope your pain is easing xx
SIanie I'm on two weeks on ,one week off but I have had extra weeks off when my feet and hands have been sore,they have also reduced my dose but it's still doing its job at the moment.My tumour markers were 191 las August and had reduced to 94 after 1st cycle and have continued to reduce but last two TMs have both been 30 which is within normal range,also had a scan in January and it showed chest lymph nodes had resolved ,they could only see one liver met which had reduced from2.4cm to 1.2 cm the other liver mets had resolved and also mets in ribs and spine had reduced long may it continue .
Well I'm off to bed as it's been a tiring day.
Take care all
Kaye xxx
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Kaye those TM's are super good!
LD hope you had a good break away. Good Luck with your scan and results.
Helen, what Marie said, reaches for Mr Sheen and duster.
X
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Helen, how are you today, how is the pain . Please make sure you are comfortable. Use your angry eyes I'm just off to polish mine for action.
Great news Kaye, hope everyone is doing okay.
HELEN I will be checking up ! Marie xx
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Yeyy fab news Kaye!! Really please for you, you take care, as Helen has said don't be over doing things.
Hugs to you and your mother-in-law
Janette x x
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Kaye,that's fantastic news yippppeeeeee 🎉🎊
Wow! Your markers are at "normal" level too! The cap is kicking Cs butt.
Huge hugs to you and your mum in law,take it easy and don't wear your self out, Helen xxxxxxxxxxxxxx
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Hi bertie1, so please for you that is doing so good for you. My mum has been told it's 2 weeks on and 1 week of for as long as it works, is this your treatment too, as you know new to this chemo so trying to get info before my mum starts. How quick did you see results ? And where are your met ? If you don't mind me asking x
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Kaye I am so pleased that your scan was all okay and that your TMs are stable as well....
It must be a very sad time tor you with regard to your MIL, but she will be gaining some comfort from your presence.

Xx
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Thanks once again ladies for your supportbrain scan was all ok thankfully and TMS stable at 30 so onto my 10 th cycle of Cape.Have just had a bit of lunch 5 minute sit down with cup of tea now off to sit with mother in law so my sister in law can go home to have a break.
Take care all
Kaye xxx
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Just got off the phone to the onc to ask if they ever checked the HER2 statue in the original biopsy and he said it was checked but came back inconclusive so did know weather heceptin would be of any use but now he is going to meet with the pathologist in the morning to look at the tissues again before he jets off on his holidays to re-evaluated it. Does this sound it something anyone has come across ?
Lemondrizzle- thanks for you comment and I hope you enjoyed your holiday, you been anywhere nice ?
Lynnq- FairPlay the lady in your group must be a tough cookie
Thanks again for all you support and letting me pick you brains xxx
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Good afternoon everyone
Just back from my 10 day break and already got the washing machine on - can't waste a glorious drying day!
Helen, so sorry to hear that your pain is no better, I really wish someone would sort it out for you.
Kaye, sorry to hear about your MIL. Keeping everything crossed for your results.
Oh Bev not another holiday cancelled. Hopefully you'll feel stronger soon and book somewhere and go straight away.
Sianie, don't know anything about Cape, but the other posts sound very promising for your mum.
Marie, glad to hear you're feeling more like yourself.
Hope everyone is as well as you can be. Back to reality now - off for scan which I hate, even though the onc nurses put the cannula in they usually struggle. Putting my brave face on
Love to you all
LD x
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Hello everyone I am trying to catch up with everyone so forgive me if I miss someone out.

Siane - one of the ladies in my sBCC group has been on cap for 4 and a half years, she us 73 years old and lives life to the full, her SE are dry hands and feet.
Kaye - so sorry to hear about your MIL ...hope your scan results are okay, thinking if you.
Bev - so sorry about your holiday, but as everyone says things will get better for you. Can you get away in the UK...my elderly neighbour has told me that the crows are nesting high in the trees so we will have a good summer. Hope it works, but just a change of scenery will help
Helen - I really wish they could get your pain under control, it is so debilitating to be in constant pain.
Good to hear that you are feeling better Marie...we all have 'down' times but with the support on here we can struggle through it.
Hope everyone else is as good as they can be, taking it easy when they need to, but living life well when they can.
Take care all xxx
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Thanks everyone for your positive comments, we just can't believe things started to move again so quick after the taxol. Hope everyone else it coping ok with treatments, scan and results etc xx
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Kaye,huge good luck hugs for today 🍀🍀xxxx
Sorry to hear about your mum in law ❤️
Helen xxxxx
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Thanks for all your lovely messages well off to hospital keeping everything crossed for scan results.Hope all you ladies are doing ok will update you all later.

Take care all
Kaye xxx
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Morning all, lovely day here in Manchester the sun is shining, hope you all waking up to the same,

Kaye, good luck with your results today will be thinking of you, so sorry to hear about your mother - in- law  I did the same a few years ago and it's a horrible thing to have to go through 😞

Hugs to all Janette xxxx 

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Kaye I hope those scan results have good news stamped all over them for you. It does sound like things have been a bit tough for you lately and it can't have been easy sitting with m.i.l. with all that on your mind as well.

 

Dawn

xx

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Sianie not Diane - wretched spellcheck!
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Diane I have been on Cape twice and have had a good quality of life on it - work full time, reasonable social life, lots of holidays and relatively mild SEs (mainly hand and foot).
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Hi everyone I'm fine - thank you for asking. Taken me ages to catch up on the thread. I'm going to pm bcc to send Sheila a message. I'll let you know if I hear anything.
Kaye - so sorry it's a difficult time. Thinking of you. I hope you have some good news with your results xx
Bev so sorry to hear about your holiday. You will get away but it's important to listen to your body and rest at the mo. You'll be feeling a lot better soon and then like Helen said you can plan a proper holiday without worrying xxx
Sianie - can't help with cape but really hope things work out and a new treatment plan is effective. It's sounds like your mum is struggling and so she is very lucky to have you supporting her. Let us know how it goes.
Helen, I'd feel better if that pain was under control. I hope your onc does something - things don't sound right - there must be something they can do.
Hello everyone else. I hope everyone is doing as well as they can. Good luck to anyone getting results/scans/treatment this week. Im really busy at work and tests on Friday so letting you know now I'll be back on at the weekend. Don't worry xxxxx

Huge hugs,
Hxxx