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Bone mets - please join in

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Re: Bone mets - please join in

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Re: Bone mets - please join in

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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Re: Bone mets - please join in

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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Re: Bone mets - please join in

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
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Marie, glad you are feeling more you. X
Good to see you FunnyFace, I was wondering if you were ok, was going to put out a call for you, I hope all is well over there. Wedding excitement. :-) X
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Good Luck for tomorrow Kaye. Hope your results are all ok.
Sorry to hear about your Mother in law. X
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hi ladies I get my scan results tomorrow anxiety already setting in hope it's good news.Hi Siani sorry to hear about your mum I've been on capecitibine for 9 months and it's been working well for me so far the worst side effect being sore hands and feet .
Helen hope your pain gets sorted soon,nothing worse than being in pain .
Chocolates hope your tests results are good.
Bev so sorry you've had to cancel your holiday ,hopefully you'll be feeling better soon and be able to book one a bit later on.
Hope all you other ladies are doing ok.
I've had a crap few days mother in law not well and the doctor says she's only got days left so sad but thankfully she's not in pain as they've got it under control,so been spending lots of time sitting by her bedside even though she's asleep most of the time now.
Just hope my results are good tomorrow
Take care all

Kaye xxxx
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Oh Helen and Bev, so sorry things are so tough at the moment. Bev friends who have had rads, WBR rads, have taken a long time to recover. Having chemo as well, you really have done well. X
Helen I hope this pain is investigated, why oh why is it such an uphill battle at your hospital? Shout or get someone else to, although of course you should not have to at all. It must be exhausting. Yes you are quite right some of those symptoms can be found in SCC, they are supposed to treat SCC as an emergency. To be honest I would consider presenting at A and E if it gets you investigated sooner and you are very concerned.
Your GP can refer you to go to straight to hospital for investigation to.
Sianie I was on Cap for four and a half years, my good friend Marilf was on the chemo for nine years, she had liver mets. Your Mum should not get the big chemo whammy as they are tablets. The dose can be lowered and still be effective too. As they are tablets your Mum can try them and stop them at any time. PM me if you want to, have any questions.
The main side effects can be tummy upsets, Imodium.
After a time, sore hands, Udderly cream, bought online, Boots Eucerin.
Sore, red, feet, Udderly again and Flexitol.
If your Mum has hair, used the cold cap, she should not lose her hair on this one. After Taxol she should find Cap much easier I think, having had both I know I found it so. X
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Hi Sianie
Sorry to hear about your Mum, as you say you must all be very shocked with this news. I had Capecitabine when my liver mets were diagnosed in 2013 and had nearly 18 months of being stable on it. I then went on to Taxotere (docetaxel) which I didn't get as good a response as I expected/hoped although the continuing regime of a Herceptin and Pertuzamab is still shrinking my mets. Cape is a more tolerated chemo and many ladies have done well on it for a long time so I hope your Mum does the same.
Hi to all the other ladies on here, especially those struggling at the moment. Bev, so sorry to hear you've had to cancel your holiday, I hope you get away somewhere nice soon, even if it's in the UK for a short break.
Helen, I hope the pain gets sorted soon, it must be so exhausting to be in constant pain.
Chocolates, I hope the tests don't show up anything nasty and that you can continue with your current treatment.
Stress head, I have had a portacath since August last year, really glad I insisted on it as my veins are rubbish. I could get my bloods done using it but I tend to still get them taken from my one good vein but I did use it for chemo and now 3 weekly Herceptin and Pertuzamab. It was put in under local anaesthetic and hasn't been a problem.
Hi to everyone I've not mentioned, thinking of you all, but chemo brain makes me forget too many details!
Nicky x
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Sianie,so sorry about your mum.as the ladies have said cap is a more tolerable chemo. I think our wonderful Belinda got 4 years out of it.
Huge hugs to you and your mum,Helen xxxxx
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Hi Siane,

 

I am so sorry to hear the news about your Mum.I have not had Cape myself but I know alot of women who have and hopefully they'll be along soon. It is an easier chemo in terms of SE's than many of the others, the main one's are sore feet/hands but you can use creams to help with this. It can be very successful for good periods of time, we have had women on it for years at a time.. In addition to being less harsh than some it is also easier to deal with because it's oral so less invasive. I hope when you are able to tell your mum more about it she will rethink.

Best wishes

Julie x

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Hi Sainie, really sorry to read your post about your mum,  I can't give you any advice as I know nothing about it but i'm one of the ladies on here will be able to give you some, take care

Hugs Janette xxxx  

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Please please can some help, my mum had amazing results on taxol but then had to waiting 3 weeks to start exemstane and today we have found out that the liver blood last have risen drastically. She has now been offered cape oral chemo but sayes she doesn't want to prolong our agony and try this. Has anyone had good results with it ? As you can imagine we are devastated
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Good afternoon Everyone,

 

Helen ,  I am so sorry you are in such pain.  Please take care.

Bev , so sorry about the holiday , but I am sure as soon as this grotty time is over you will be off somewhere nice.

 

Hope everyone is okay, good luck with results and please look after yourselves.

Marie xxx

PS After the big rant last week , I have slowly turned back into my normal self xxx Thanks everyone

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Hi ladies,

Helen, can' t  believe that you are still suffering, hope they can sort out that pain soon for you.

 

Bev, so sorry you have had to cancel your holiday that's such a shame, stay strong there's always later on in the year when you are feeling stronger.

 

Chocolates, how you doing? When are you having your tests??

Hi to all you other lovely ladies 

Hugs Janette xxxx 

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Helen, Hang in there chickie! I hope they get your pain under control and get to the root of it!! Don't let them wave off your symptoms. Push for answers! Funnyface

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Bev, I'm sorry the SE from rads are still playing havoc and have messed up your  vacation. I hope you feel better soon. Glad the vinorelbine is going smoothly. Wishing you the best! Funnyface

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Oh,Bev,I'm so sorry you've had to cancel holiday as it just what you needed xxx

Right now it's angry eyes👀 as soon as you've had your scan next month you are getting a holiday booked,somewhere AND straight away! The cat lady has spoken xx

You need something to look forward to after all this 💩 you've put up with.
Remember SEs from rads take ages to go.
You stay strong lovely lady and huge hugs are coming your way,Helen xxxxx
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Lovely to hear from you Bev, I am so sorry you are still feeling so poorly and that you will miss your holiday. Hopefully you will soon be feeling a little better which will enable you to arrange something else to look forward to. Look after yourself you lovely lady, we are all thinking of you and everybody else dealing with this awful disease. Jackie xx

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Sorry havdnt posted for while. Still suffering the awful fatigue from the brain rads. Cant do anything...falling asleep on and off all day. Started my 2nd cycle of Vinorelbine last wed. Been ok on that. Have my next scan on 11 june but not feeling hopeful as ive noticed that the small swelling on front of my throat seems bigger and my voice is quieter....also when i cough the sound is different from the airway. More wheezy.
Ive had to cancel my holiday Helen as its only a month away and i dont feel fig enough to travel. ..i cant even walk on my own outside the house as I'm too disorientated and giddy. Onc says this is still side effect of rads.
I had a gut feeling months ago that i wouldnt be going....everything seems to have been snatched away from me.
Hope you're still well and treatment still going ok
Love bev xxxx