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Bone mets - please join in

Chocolates
Member

Re: Bone mets - please join in

Morning ladies - sorry afternoon!! Orse welcome to the forum. I'm so sorry you've had to join us and everything that goes with it but we are a lovely bunch and I hope you find the support and advice useful. I can relate to zapping aliens and hope that you don't feel too exhausted after your first treatment. Remember to rest and listen to your body and go with the flow. Be kind to yourself.
Stress head - firstly never apologise for using the forum as an outlet. It's what we are here for. I'm so sorry to hear yur news also. But like others have said you must keep pushing. I feel your onc is very negative and that in itself can drag you down. Are you possibly in a position to change oncs/hospitals? Just a thought, I appreciate there is so much going on for you at the moment that you're not sure what to do or which way to turn but the most important thing to do is what you want. If you feel that things aren't quite right then you decide what you want to do. Let us know what yu decide when you are ready. However as Lynn said, no one knows what's going to happen so try to stay as positive as you can xx

Janette, have a wonderful time. Look forward to hearing all about it when you get back.
FF - I hear occasionally about Bev from another site. Have you tried to pm her?

I'm pleased to say I've completed my ironing so just sitting down for five minutes. Hope everyone having scans/results/treatments is ok.

Huge hugs everyone,
Hxxx
Orse1970
Member

Re: Bone mets - please join in

Hi ladies

Sitting here in the chemo ward at mo having my first lot of gemzar.... And I'm imagining the old type of computer games where the aliens were zapped by the 'goodies' wham there goes another !!!!!! 😃😃😃 (showing my age here)

Stresshead, it does seem we are following the same path... I'm not giving up either... Like you... I've arranged another appt with a specialist on Tnbc..I'm fighting every inch for my boys.....

Stresshead - Tbh I read a lot on here where the ladies have been on Cape for years and I've seen a couple of USA sites where they have been on erbulin and gemzar for years until it has stopped working... I know you have had a second opinion but something doesn't sound right to me... I would push again if I were you until u get an answer that is satisfactory, you don't sound happy with what you have been told..

Lynne.... Thank you for your words of encouragement.... And I intend to fight until there is nowt left... I hope I'm as successful as you, and I hope u stay stable for many more years...

Natalie1 .... I don't know you, but I'm so jealous... Have a lovely, lovely time in the big

Corinne.. Xxxx
funnyface
Community Champion

Re: Bone mets - please join in

Is anyone able to contact Bevlar?

funnyface
Community Champion

Re: Bone mets - please join in

Enjoy!!! I will be waving at you from near Philadelphia!

JulieD
Community Champion

Re: Bone mets - please join in

Have a great time! Loking forward to hearing all about it on your return xx

rosie53
Member

Re: Bone mets - please join in

Hi Ladies, just signing out for a wk, off to the Big Apple this morning 🙂
Thinking of you all, its been a horrible few wks on here with the loss of some wonderful ladies!! Take care everyone, huge hugs Janette x x x
stresshead
Member

Re: Bone mets - please join in

Good morning ladies...i havent been on here for a while and am abolutely devastated to read about Sianie's mum, Chris and Sheila..i cant add any more words to the wonderful things that have been said by so many but just wanted to let the families involved know my thoughts and prayers are with them. it is so difficult to keep being positive when so many lovely people are being lost to this stinking disease. I feel really bad now....i havent posted for a while because i have been on a 'downer' since my last diagnosis but at least i'm still here to try and keep fighting.

My skin mets returned after being off cape for 6 weeks, they have spread to my abdomen and the cancer is back in my reconstruction. I am now on erubillin. Since this happened i feel that the whole outlook and attitude of everyone has changed..no one sems to have any wors of encouragement or positivity. I know its bad as it came back so quickly and i have had a second opinion (one Onc backing the other one up) but dealing with the uncertainty is crippling. I go to my Onc and ask about different treatments etc but just get 'negatives'...cant have surgery becuse it could spread somewhere else, cant have targeted radiotherapy, can't try the immiquimod cream as that is for skin cancer not breast cancer,can only have 10 cycles of erubillin becaue of side effects (even tho bcn said could stay on it indefinitely)..no one mentions the next step if this doesn't work.....i know i'm probably burying my head in the sand but i'm finding it all so scary now.

Orse, seems like we are even more in the same situation now!! I have a ct scan in a few weeks and am just dreading more bad news. Finding it difficult to 'hold on'.

I'm sorry to have gone ranting on and been so negative but you ladies are really the only ones i can be truly honest with..i know you'll understand and thanks for 'listening'. Love to all.xx

 

Lynnq
Member

Re: Bone mets - please join in

Hello Orse..my cancer is not the same as yours but I was told by the breast surgeon that life expectancy was 2 - 5 years for one part of my cancer and 'a litttle less' for the other part.......and i have been stable ever since...that was over 2 and a half years ago.
My onc has told me that unless major organs are affected I can carry on for some time. I wonder if you can be referred to a psychologist, or as already suggested ring the BCC nurses on here. Do you have a BC nurse?
Hope you managed to sleep a little ... Keep posting on here there'll always be someone to respond.
Take care
Lynne xx
helen44
Member

Re: Bone mets - please join in

I am saddened to see that Sheila has passed away. My thoughts and prayers are with her family, she will be missed. Rest in peace Sheila.
Love Helen x
LemonDrizzle
Member

Re: Bone mets - please join in

So sad to hear about the wonderful Sheila, my thoughts are with her family.
LD x
Marie123
Member

Re: Bone mets - please join in

C check sky news there has been a breakthrough in skin cancer using the herpes virus. It does prove that things are coming through all the time. M x
springsummer
Member

Re: Bone mets - please join in

Dear Orse

 

I just has to reply to your post.  Of course you are so scared after hearing something like that. But my experience, having been living with secondaries to my liver for 4 years and bones and lungs  for the last 6 months as well, is that the 2 years prognosis is just wrong! No major organs  are involved -   I think the Onc who told you that was wrong and also unprofessional. Why don't you seek out a second opinion - even it is just to allay your fears.  This disease is bad enough without the medical team scaring us to death!   I feel fit and well at the moment and back at full time work as a teacher - I have been through some rough times though during that period. 2 years does not sound right to me.  Take heart Orse.  SpringSummer xx

Stillhere
Member

Re: Bone mets - please join in

Hallo Orse, take time to recover from the ordeal of seeing your Onc. They cannot put a definitive timescale on your mets, so ignore this prognosis. I've never been given one, not that I've asked, but everyone is different and new treatments are becoming available all the time. Just be kind to yourself until your treatment starts. Big hugs from a fellow Nodee xxxx
Marie123
Member

Re: Bone mets - please join in

C , stop worrying about being inappropriate. We all understand and feel for you. Go and make yourself a cup of tea, then phone BCC and speak to someone who can talk it through with you. Sending you a big hug. Marie xx
Orse1970
Member

Re: Bone mets - please join in

Omg... I've just read the recent posts on here and realise how inappropriate my post was...

I'm so sorry for all you ladies that knew Sheila and my condolences go to her family and friends..... This is such a crap disease!!

😞
C xx
Orse1970
Member

Re: Bone mets - please join in

Hi ladies

Just been to see oncologist.. She has put me on carboplatin / gemzar..

I have skin mets on my reconstruction, lymph node enlarged in chest, and confirmed cancer in my lymph node in my axillia (opposite side to my cancer).. Last ct/bone scan didn't show anything to my major organs..

But then my oncologist said my life expectancy is 2 years.. If I'm lucky!!! I'm in bits.. Two young boys aged 11 & 9... And I'm not ready to leave them yet... I'm tnbc and scared to death!!!

In total shock!!
C xx
Stillhere
Member

Re: Bone mets - please join in

I didn't know you, Sheila, but as one of us, may you rest in peace. Thoughts and prayers to your family and friends xxx
nicky08
Community Champion

Re: Bone mets - please join in

Such sad news to hear about Sheila (Roxy12). My heart goes out to her husband, family and friends.
Nicky x

Tinkerbelle
Member

Re: Bone mets - please join in

So sorry to hear about Sheila - my thoughts to her family and friends. xx

Macie40
Member

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So sorry to hear another wonderful lady taken from us R.I.P. Dear Sheila condolences to her husband and family Love Macie x x

Marirose
Member

Re: Bone mets - please join in

So sorry to hear the bad news of Sheila's death I know she was one of your key members may she now R.I.P and sincere wishes to all her family and friends.

Barton
Member

Re: Bone mets - please join in

Another great lady I'm afraid I didn't "know", except through all of you lovely ladies!  RIP Sheila, and I'm so sorry I didn't get to chat with you. Another who has been taken too soon.  Hugs. Barton.x

rosie53
Member

Re: Bone mets - please join in

So sad to hear about Sheila, thank you Anna for letting us know.

RIP Sheila, what a wonderful lady you were. 

Hugs Janette xxxxxxx 

Marie123
Member

Re: Bone mets - please join in

So sad to hear this news. Sheila and her family will be in my thoughts and prayers. Marie
Chocolates
Member

Re: Bone mets - please join in

Ladies, this is very difficult news to take. Sheila was such a lovely woman who always put others first and never really moaned about her treatments. She always sought out the positives. I'm devastated to hear that she has passed, but also thankful that we know and not still wondering which was becoming more difficult as time went on.
I just want you all to know now that I'm so grateful for you all, the strength and support. It means so much. I cant do this without you.
I'm now going to follow our Sheila's lead and be less moany - well until it comes to Helen. Sheila I know would be urging Helen to get a second opinion - I won't give up on that - so Helen be warned.
For now, I'm so glad Sheila joined our forum and it was a privilege to correspond with her. She is so sadly missed.

Huge hugs everyone,
Hxx
funnyface
Community Champion

Re: Bone mets - please join in

Sheila was so focused on being positive about her treatments. I'm sorry to read this. RIP Sheila. FF

JulieD
Community Champion

Re: Bone mets - please join in

Thank you Anna for letting us know about Sheila. We will miss her. Thoughts and prayers are with her family. RIP dear Sheila xx

2catlady
Member

Re: Bone mets - please join in

Thank you Anna for letting us know.
So sad,Sheila was a wonderful lady and will be sadly missed.
Xx
belinda
Member

Re: Bone mets - please join in

Thanks for letting us know Anna. Sad news. My sincere condolences to Sheila's husband and family, Sheila will be missed by many. X
Anna_BCC
Member

Re: Bone mets - please join in

Dear Everyone

 

I know that you have all been concerned about Sheila (Roxy12) and I now have a sad update for you.  Sheila's husband has emailed me over the weekend to let me know that Sheila passed away on 5 May.  Sheila had been in Christie for 3 weeks and the cancer had spread to her liver, she then went down hill fast.  Sheila went home and was there with her family when she passed away.  Sheila's husband said how much support she received over the years and how she valued the friendships she made here on the forum.

 

I am again, so sorry to tell you all this and I know this is not the news you were hoping for.  Thank you all for your support of each other, I know how much it means to many of you.

 

If you would like to talk to anyone please remember that our helpline is here for you all, offering support as well as information.  0808 800 6000 Monday-Friday 9-5 & Saturday 10-2.

 

Best wishes

Anna

 

June_BCC
Member

Re: Bone mets - please join in

Hello 

 

Earlier on in the thread there was a discussion about tumour markers.  We have a little information about them on our website

 

"Blood tests

 

You may have blood tests although the type of test can depend on your symptoms and any treatment you are currently having. Your specialist team will discuss what tests they are doing and why you are having them.

 

Some people have a blood test for tumour markers. These are proteins found in the blood which may provide additional information about how you are responding to treatment but there is some debate about how accurate they are so they are not always used."

 

http://www.breastcancercare.org.uk/breast-cancer-information/treating-breast-cancer/secondary-breast...

 

If you have any concerns or queries regarding your own diagnoses please call ouhelpline on 0808 800 6000, lines are open 9-5 during the week and 10-2 Saturdays.

 

With best wishes

June, moderator

 

Lynnq
Member

Re: Bone mets - please join in

Hi Marie. Where do you live? The same thing happened to me. Dx Oct 2012 and I found out a couole of weeks ago. When I spoke to them they said that they would put me on the waiting list. I asked why there hadn't been much info and was told that they tell you about it when you go to the chemo unit..........a lot of SBC ladies don't go onto chemo for a while, I haven't .when I mentioned this she just became a but vague.....
Marie123
Member

Re: Bone mets - please join in

Good morning ladies, hope you are all doing well. I have steam coming out of every part of me. Apparently there is a centre on my hospital site dedicated to breast cancer with therapies  and  t l c . I was dx in Sep 2013 and no one told me. . There isn't even a poster  or a leaflet in the hospital and the bc nurses didn't tell me  The lack of care I find appalling .

Sorry about this post , but I am fed up of sorting everything out. .

Marie xx

Bluebell60
Member

Re: Bone mets - please join in

Thanks for the welcome, ladies. I will try hard to stay off the naughty step!
xxx
2catlady
Member

Re: Bone mets - please join in

Good morning ladies lovely to see you posting Chocolate shoppe you're feeling a little better .

No news from Sheila my end either .😞

Welcome, bluebell,everything chocolate said is true,the ladies on here are fantastic.
Huge hugs,Helen xxxxxx
Chocolates
Member

Re: Bone mets - please join in

Morning everyone, morning bluebell - lovely to meet you. There are fantastic women here who will support you and celebrate good times as well as hold your hand during the difficult times. We are quite mad, have a laugh and generally offer a lifeline and place where you can say what you want and we will get you. Beware of being moderated though - only a few people have this honour - Helen will explain when she comes on!!! - otherwise lovely to have you with us.
Right busy day today - lots of chores to get done. Weather not so good - oh will again make an excuse not to mow lawn.
Have a good day everyone. No news yet re Sheila - just keeping my fingers crossed xxx
Bluebell60
Member

Re: Bone mets - please join in

Just jumped into the Cyber Cafe & wanted to introduce myself. I'm new to posting but have found this site invaluable. I had Stage 1 BC in 2004 & almost believed I was "cured" until 2013, when I had a regional reoccurance in the nodes which I was told was incurable. I had the works - chemo, rads & am currently on exemestane. I'm heavily ER/PR+Her-
Hope everyone is enjoying the holiday weekend.
2catlady
Member

Re: Bone mets - please join in

Thank you ladies xxxx I'll find out when I have CT. Some of the squatters are being naughty in ribs or liver I think. But I'm praying pain is them being squashed by Eribulin.xxxxxx
See you in cafe later,hugs,Helen xxxxxxx
Lynnq
Member

Re: Bone mets - please join in

So sorry to hear about Chris...love abd best wishes to her family.
LemonDrizzle
Member

Re: Bone mets - please join in

Good morning everyone
Such sad news about Chris, she was obviously well loved on here.

Well, after a beautiful day up here in the NW where we sat outside and had a bbq, it's unfortunately back to being grey today. At least I'll be able to pop into cafe later for a piece of cake though!
Helen, I think Chocs has come up with a brilliant idea for a new thread, maybe we'll have to think of a persuasion policy to encourage you to agree. The naughty step can be replaced with the gentle removal of husbands - if they get shared out to us you may regret it especially when they see our new knickers that Marie has insisted we all get! Seriously though Helen, your pain can't be right.
Hope everyone has as good a day as you can and, as always, thinking of those who are struggling
LD x,
Chocolates
Member

Re: Bone mets - please join in

Morning ladies, such difficult news on the thread this week. Sianie, I'm so sorry to hear about your mum. I want you to know we are all holding yu close at this very difficult time. What a beautiful daughter you are and I know your mum was obviously very proud of you. Sending huge hugs to you and your family.
And then our steris, yes we knew it was coming but still doesn't make it any easier. Such a lovely lady who always helped out anyone with support and advice. So so sad. I hate this disease. So I seek solace with all of you and together our bond grows. It is just so unfair, so cruel. Sending love and prayers to both families.

Lynn, happy birthday, I really hope you had a lovely day, and Helen I hope your pain is from the dancing from your son's 21st. Such a special occasion - hope you enjoyed the party. And now I hope you are thinking about changing your onc - I'm going to start a new thread soon, persuade Helen to change her onc if you don't do it. Then you'll have to listen to us all telling you everyday. So Helen gather your strength this weekend as I no longer can cope with all this pain you're in. It's not right. You need a second opinion - at least if you don't change you should get another view point. Please think about it.

Hello everyone else - how is everybody doing? I worked four days this week and went for treatment Friday. Didn't feel quite right , then came home and had the most awful tummy upset. Finally feeling like myself today - glad it's half term as I need to rest and relax a bit. Sorry for being a bit quiet - will pop into the coffee shop later to see how my aprons are doing - and of course to catch up with you ladies.

Huge hugs,
Hxxx
funnyface
Community Champion

Re: Bone mets - please join in

Even though I didn't know Chris, I'm sad to read of her passing. So tired of losing so many wonderful ladies. FF

Barton
Member

Re: Bone mets - please join in

So sorry to hear of the news about Chris. I have to be honest and say I never "met" her on here, but I can tell from the way you all speak about her that she was a wonderful person and will be sorely missed. Sorry I missed her posts and humour. RIP Chris. Hugs to all who knew her, and her family. Barton.x

helen44
Member

Re: Bone mets - please join in

Thank you for letting us know about Chris - it is very sad news and she will be missed by her family, friends and all of us on the forum. Rest in peace lovely lady, Helen x

nicky08
Community Champion

Re: Bone mets - please join in

Thank you Julie for letting us know about Chris. Although I don't think this news was unexpected it is still very very sad for all of those who knew Chris either in real life or on here. She will be sadly missed and my heart goes out to her husband Steve and her family, may she rest in peace.
Nicky x

2catlady
Member

Re: Bone mets - please join in

Oh,Julie,I'm so sorry to hear this news. Chris will always be in our hearts. She was a beautiful person who helped a lot of ladies.
Please pass on our love and sympathy to her family xxxx Helen xxxxx
belinda
Member

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Really sorry to hear this sad news Julie. Chris was always such a supportive poster here. My sincere condolences to all who knew and loved Chris.
Rest in Peace Chris. X
rosie53
Member

Re: Bone mets - please join in

Aww that is so sad to hear,  thanks for letting us know Julie  and please pass on my sympathy to her family.

Janette xxxx 

JulieD
Community Champion

Re: Bone mets - please join in

Yes good idea Helen, I'm sure other ladies will enjoy joining us in the coffeee shop.

 

I am really sorry but I have sad news to share with you. Our dear Chris (Steris) passed away last night. Her husband, Steve let me know thismorning.This is of course very sad news but we must try to comfort ourselves with the knowledge that Chris is now pain and worry free, she got to see her new Grandaughter and she had the loving support of her family who made her last weeks as good as they could. I'm sure she'lk be dancing along to Strictly when it returns and will be making all the other angels laugh and smile. Bless you for your friendship Chris RIP xx

rosie53
Member

Re: Bone mets - please join in

Good idea Helen xxxx