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Bone mets - please join in

funnyface
Community Champion

Re: Bone mets - please join in

 
funnyface
Community Champion

Re: Bone mets - please join in

Belinda, I used to love liver and onions, but haven't had it in years. No one in my family liked it, so I don't fix it. I'm afraid to try it now! I figure I won't like it any more. Our snow is starting to melt! Maybe I will get out of here for a bit. Take care! Funnyface

Sianie
Member

Re: Bone mets - please join in

Thanks Sheila, I hope your doing ok and that you enjoyed your coffee and scone. Send hugs to yourself and bev xx
stresshead
Member

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Just wanted to re-iterate everything Pam01 has said...hope Bev Helen and all others suffering at the moment are feeling better.

Sianie, i was on exemestane for about two years before i got secondaries. Have had 2 chemo's and now on letrozole...fingers crossed it works for your mum. Best wishes to everyone waitnig for scans, results etc. xx

springsummer
Member

Re: Bone mets - please join in

good luck tourensal.   fingers crossed. x

nicky08
Community Champion

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Hi lovely ladies, as Janette said, there are so many of us on here that it's difficult to remember everything so I'm sorry to Bev that I thought you were already out of hospital 😞 I hope both you and Helen do get out soon as being at home seems so much better even though you have all the professional staff looking after you whilst in hospital.
Good luck to everyone with their appointments today and that you get the results or answers you're hoping for.
Nicky x

roxy12
Member

Re: Bone mets - please join in

Morning all. Hope we are all OK. Dull here in NW but at least it is dry! 

Janette, good news about your ESA award and good luck with your onc this afternoon. I will be thinking of you and I will have my angry eyes at the ready.

Sian, that's good news about your mum. I hope it has helped her to feel more positive.

Tournesol, I hope the trial goes well and the side effects aren't too bad.

Bev and Helen, I hope you are feeling much better. I had to have blood transfusion when I was in hospital last year and I felt so much better after.

I had a call from the oncs secretary yesterday and she said that she had been onto the scan people but they said there wasn't anything until the 25th of march but if there is a cancellation they will get in touch. She had spoken to onc and he said I would be fine.

Just had a call from a friend. Going shopping this afternoon and coffee and a scone. Should take my mind off things.😊

Take care everybody. Lots of love Sheila. Xxx

Marie123
Member

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Angry eyes polished and working !!! Good luck  love Marie

belinda
Member

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Hope that appointment goes well Janette. X
rosie53
Member

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Morning ladies,
sorry got my ladies mixed up yesterday...oops, i was thinking Shelia was in hospital instead of Bev!!! So many lovely ladies on here its hard to keep up!!
Well ladies i need all "angry eyes" out today please, got my onc appt at 3.15 and i am praying she will bring my bone scan forward.
Love to all, good luck to everyone having treatment, results etc
Janette x x
Sianie
Member

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Thanks for you reply pam01, I'm mum was on letrozole for 3.5 years after the primary breast cancer then the liver secondaries were found after my mother was extremely ill so the Drs told her yesterday that he will now try Exemstane once the chemo is finished so we are crossing everything so that she gets a good response from it xxxx
pam01
Member

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Best wishes to those of you going through the mill at the moment.... Especially Bev and Helen..... It's so scary waiting for symptoms to improve and fearing they won't....and long hours to reflect on it all with little distraction by day and too much at Night!.....really pleased to hear of those with good news...and stability. Sianie exemestane is a hormonal treatment. An anti oestrogen, often used when other hormone treatments have allowed progression.. It is often very successful...with fewer side effects than chemo. It held things relatively stable for me for about a year...longer for many others...... A lot of hand holding and hugs to those who need it tonight.xx

belinda
Member

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Sorry to hear you are still in hospital Helen and Bev. There are some horrible bugs around Bev, my OH has one but I'm hoping he will be less contagious in a couple of days as I have chemo Friday. Hope you are home soon.
So pleased you are finally getting your transfusion Helen. I was borderline, just missed one last week and feel completely rubbish so goodness knows how you have felt. 😞
Good to read some good news here too. Take Care All. X
Tournesol
Member

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Hi to all, I started my clinical trial today; just had one dose of the trial drug so far (another one to take later) and also had the first injections of the fulvestrant that goes with it. Feeling OK so far but a bit tense wondering what if any side effects there will be. Don't want to look at the list in the trial info again as I will only end up making myself feel worse (the list was a long one) and everyone is different. I was given some anti diarrhoea medication to bring home so I guess that's a clue to what the hospital think may happen. Hoping not to need it...

 

Thinking of everyone who's having a difficult time at the moment. Thanks to everyone who posts for helping me to feel less alone with this.

 

Tournesol x

bertie1
Member

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Bev stay strong and I'm sure they'll sort this out for you xx
Chocolates thanks for update on Helen give her my love and hope to see her back posting once they've sorted out her transfusion xx
Hope everyone else is doing ok
Take care all
Kaye xx
Chocolates
Member

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Evening ladies - Bev really feel for you. I'm going to pop in later and sit with you. Just nice to chat and help make you feel a bit more relaxed. I hope they get on top of this soon. There are a lot of nasty bugs about - the 100 day cough being one. Stay strong and hopefully things will begin to improve soon.
Sianie - good news re your mum. You must be pleased and relieved. Hope next scan shows similar results and next chemo keeps her stable for a long time.
Janette - yeah - such good news. Thoroughly deserved. Hope that will ease financial burden a bit.
Spring summer - hope the increased steroids help with the se's and this next week is a little easier for you.

Update re Helen, she still has a high temp. They have stopped the ab's as they don't think they are making any difference. They have decided now to do the blood transfusion - the one which should have happened on Monday. This is because Helen is very breathless and her lips went blue today. When that will happen though is a waiting game. Helen says it is still very disorganised and takes forever to get something done. Still no sign of onc. She sends her love to everyone and misses us all. She can't wait to catch up when she's out of hospital.

Huge hugs,
Hxxx

Sianie
Member

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Hope you get well soon bev and Helen.
Onc was pleased with my mum yesterday and the scan was noted as being stable to better as he is sure that some of the cancer images are now scar tissue, so 5 more weeks of taxol then a complete rest from treatment followed by Exemstane and a scan 12 weeks from start of the drug. Has anyone had any success or know anything about this drug ? Horrendous weather in Neath today so a night in front of the fire is called for. Hope everyone is doing well
Love Sian
Xxx
rosie53
Member

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Hi ladies, hope everyone is ok.
Shelia and Helen sending you both my love, hope you are both feeling better and are home soon.
Well i got a letter today to say i have got the ESA award, £108 a wk really pleased as i was not sure i would get it.
Hugs Janette x x
springsummer
Member

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darling bev

 

keep strong. They will sort it out for you. Thinking of you

 

SS

Bevlaar
Member

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Im still in hospital and on iv antibiotics  and tamiflu, neutraphils  still low which is strange as its now been nearly 4 weeks  since  last  chemo.  Not neutrapenic.  Cough is horrendous  and my back, sides and ribs are so sore and painful. Hoping its down to too much coughing  though. If the cough stops I'll  feel so much better but still feeling rough really. Doesnt seem to be any end to all of this!

Feeling down now and worried about all this pain 😢

love bev xxxx

springsummer
Member

Re: Bone mets - please join in

back from hospital. no news really. too early to say if it is working. They have upped my steriods so hopefully breathing will get better. It is my only side effect - bone and liver is fine!!! although I have had them longer. back next week and they should be able to tell me more then.  Scan on 8 April

 

 

on top of all this having to deal wih a major restructuring  at work  with my job in jeapordy. Dealing with unions  and everything. Still quite protected under the diablility act so not too worried and it gives me something to do whilst i am not at work for this week. 

SS

 

nicky08
Community Champion

Re: Bone mets - please join in

Sorry to hear that Helen is still holed up in hospital 😞 Although it's the best place for her to be I'm sure she'd rather be at home and definitely not feeling I'll. sorry also to hear that you were in hospital as well, Bev. Glad you got out and hope the treatment is being kind, or kinder, to you.
Great news Macie, always good to hear, let's hope it continues.
Hi to everyone else, fingers crossed for all those getting results or waiting for appointments and an easy time of things and good news on all fronts.
Nicky x

LemonDrizzle
Member

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Good afternoon everyone
Great news Macie.
Sheila, hope news from MRI is good for you.
Springsummer, hoping today goes well.
Helen and Bev, hoping you are both feeling better today.
Hope everyone else is as well as you can be.
LD x
Stillhere
Member

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To Macie, great news, long may it continue! I've been on Cap since July 2013.
To all the ladies in hospital, waiting for news or having difficulties, lots of positive (((((vibes)))) xxx
roxy12
Member

Re: Bone mets - please join in

Well done Macie! That's great news.

Janette, I hope you get your scan brought forward. I know how bad the waiting is.

Spring summer, I hope you are soon feeling much better.

Thanks to those wishing me good luck with MRI. Hope to hear something today.

Hope Helen and Bev are on the mend and are home soon.lots of love,Sheila xxx

bertie1
Member

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Macie well done that's great news xx
Spring summer good luck for today hope the trial is working and they manage to sort out side effects xx
Helen and Bev hope you're both feeling better sending hugs your way xx
Chocolates,Nicky Sheila and all you other ladies hope we're all doing ok.Good luck to all with appts .scans and results this week.
Take care all
Kaye xxx
Chocolates
Member

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Spring summer - good luck today. Let's hope that the se's you are experiencing will be managed by the team and you start to feel a lot better soon, and of course that the trial is working.
Hxxx
funnyface
Community Champion

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Oh Bev, That was so insensitive of that doctor! I think a DNR is something you have to decide on with your hubby and regular oncologist. I have already told my hubby I'm not ready to quit yet. I said we both will know when the time is right and so will you. There is  still new options coming out and as long as you aren't suffering and are willing to keep trying it should be your choice!! Funnyface

springsummer
Member

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macie - WELL DONE!!! great news  

edwina64
Member

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Hi all, sorry to hearBev and Helen in hospital as both you ladies are an inspiration. Very bestest wishes to you both and everyone else. Lets get together with positive thinking fou us all x

springsummer
Member

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bev - what a horrible experience. i am so sorry.   i was in hospital this last summer with an infection and was on iv antibiotics for a week. they sorted it out in the end though! off to hospital tomorrow for my first week review on the parp inhibitors. have had a rough week with my breathing getting worse and felt quite scared at times. things seem better today though - don't know if it the steriods they put me on or the parp inhibitor beginning to work. think maybe the steriods as they said the parps will take about 2 weeks. to startt working. going to ask them for stonger steriods tomorrow........ Tourensel when are you starting your trial? its soon isn't it?   did you know they reimburse your travel expenses for the trial? i'm getting taxis to all my appointments know . much love to al you ladies and Helen - GET WELL SOON  i miss you!

 

SS xx

 

 

Chocolates
Member

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Macie - great news. Thanks for sharing. Long may it continue. Natalie - got my teacher stare organised for you. Shall I send the heavy brass along as well. They are very good as long as there are no mirrors. I'll even ensure they don't wear their aprons!!

Go well,
Hxxx
JulieD
Community Champion

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Macie great news thanks for sharing, always good to hear nice news.

 

Bev, that was awful, some Drs just don't think! hope you start to feel better really quckily and can return home

 

Love to Helen, keep strong my lvely we are all willing you well.

 

Sheila hope you get a faster MRI, I'm sure you'l feel easier knowing treatment is closer.

 

Janette good for you, sometimes we just have to stick to our guns and make a bit of noise.

 

Take care everyone xx

 

bertie1
Member

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Evening ladies,Bev sorry to hear your not well and you,re right that doctor is a t***er,when you are well enough you need to make a complaint ,hope you feel better soonxx
Chocolates thanks for the update on Helen send her my love xx
Sheila you need to get your Mri sorted two weeks is too long too wait xx
Hope everyone else is doing ok xx
Take care all
Kaye xxx
rosie53
Member

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Macie, that is great news, really pleased for you 🙂
Shelia, hope you get your MRI sorted soon, i see my onc on Thurs and am not moving from her office until she agrees to bring my bone scan forward, its not til the 15th April then it will be a 2wk wait as usual for results....grrr, my markers are rising and my pain is increasing, i need to know what is going on!!!
Hi to all, hope everyone is keeping well
Hugs Janette x x
Chocolates
Member

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Evening ladies, Bev that is awful, Helen sends her love to you. I'm so sorry that in this day and age someone can still speak to you like that. It's just not acceptable. I hope when you're feeling a lot better you will make a complaint. What a time to ask, when you are scared and vulnerable. From reading this thread and others I appreciate that at some point I'm going to get asked that question but never, ever should it be asked when you are in that state. When will people learn we are not objects?

Update from Helen, much the same really. Sounded more feed up tonight. I feel she needs to let her body rest and get over this but her mind is fighting it. We all have lower immune system which means it takes longer to get better. Our minds though focus on the worst situation which stops us from totally relaxing and recovering. She still has a few jokes so is trying to keep positive. Let's hope that things improve quickly. No sign of onc, but her sisters onc popped in to see her and she said he was lovely. So ladies a continuation of angry eyes is needed. We will succeed.
Sheila, I hope that mri gets booked in quicker than two weeks. That's just too long. It needs to be next week if poss so yu can start treatment ASAP afterwards. Fingers crossed you hear something soon.

Hello everyone else. Sorry I'm rushing this to get to live chat. Hope everyone is doing ok.

Huge hugs,
Hxxxx
Macie40
Member

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Hi Ladies I just thought I would like to share my good news with you,went for scan results today and were as follows a reduction in pleural effusions and also internal mammary soft tissue. Stable bone metastasis with strong evidence of response to treatment (capecitabine )start 16th cycle again today so I'm very happy to continue.I hope that all you lovely ladies waiting for results get the news we all like to hear.
Sending love to Helen and Bev get well soon and back home where you both belong love from Macie x x x

roxy12
Member

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Hi chocolates, thanks for keeping us updated about Helen. I hope she is soon home with a good plan of treatment. Would you give her my love if you speak to her?

My treatment is waiting for the MRI scan. Last week the onc said he thought that it would be quicker if he booked one at the christie rather than at my local hospital but I got my appointment today and it isn't for two weeks. I phoned his sec and she is going to speak to him and get back to me so we shall see.

Bev, that is inexcusable what that doctor said. You are nowhere near that stage yet!! I can't believe how far behind the times some doctors are. My bcn told my daughter last September to prepare for palliative care as I was too Ill for chemo but after a few weeks I had improved enough to start chemo and when I did it knocked the cancer back.

Hope you are soon feeling much better.

Lots of love to everyone. Sheila xxx

rosie53
Member

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Aww Bev i feel for you, i agree what an absolute to--er!! Hope your feeling a bit better now.
Sending you a huge hug Janette x x
LemonDrizzle
Member

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Bev, that's awful and the last thing you needed to hear.with all the stress of not being well and being admitted. Put all your energy into getting better and going home instead of dwelling on the inappropriate and unacceptable timing of his words - easier said than done I know.
LD x
Barton
Member

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Bev, so sorry to hear you are feeling like cr#p at the moment. And I can't believe what that doc said to you!!! How dare he! Talk about total insensivity!!! I am absolutely amazed! No wonder you got upset - that's enough to upset anyone. Chocolates, thank you again for the update on poor Helen. Hope she feels better soon. Good luck to all having treatments/tests/results. Hugs. Barton.x

Bevlaar
Member

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Hi to everyone,  so sorry to hear youre in hospital  Helen. Hope they get you well soon and on your way  home.

I was admitted yesterday too. Had been ill for a week with heavy head cold but temp soared on weekend to 37.9 and they thought i was neutrapenic  so got me in to hospital.

Im jyst being hooked up to my 3rd lot of  iv antibiotics  and feeling a little better but they said my wbcs were ok and looks like ive got a flu virus but are going to continue with the  meds anyway for a bit longer.

 

Had an awful experience when i was admitted tho. Was feeling like crap and they had put me on oxygen when this  oncall doc who was admitting me actually turned to me and hubby and asked what my DNR requirements  were!!!!  I told him tearfully that I'd  never been asked! Hubby took him out to the corridor and when he came back in alone i could see he was  tearful like me.  A bit later the doc came back in and asked if he'd  upset me! I said "yes you did" quite harshly and he apologised and said it was just in case i developed pneumonia!  

What an absolute to**er!

I thought that was unacceptable. I was under the impression that  that was usually discussed with the family at a much later stage at a pre appointed meeting....certainly not asked of the patient!!

Anyway hope everyone  else is ok.

Pam sounds like you had a great holiday I'm  really  envious! 

Love bev xxxx

 

Jo_BCC
Member

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Looking forward to chatting with all the ladies on Secondary Live Chat tonight.  If you haven't joined in before, here's the link, do come and join us you'll be made most welcome.

 

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

 

Best wishes

 

Jo, Moderator

JulieD
Community Champion

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Sinai a happy birthday wish for your Mum, hope the results are good news for her/you.

 

Marie123, good to have your angry eyes joining in. Hope you are feeling a little less isolated and afraid knowing you have lots of friends here who understand.

 

Big gentle hugs to Helen,hope things are improving by the hour.

 

Good luck to anyone else waiting for results, scans etc. Hope everyone has a reasonable day xx

Porkie
Member

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Thankyou Chocolates for keeping us up to date on Helen. I do hope she is feeling a little better today so that she will soon be home and back to her cheery self. Good luck to everybody else having scans, results or teatments - I do hope they are all kind to you.xx

Sianie
Member

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Oncologist appointment and last weeks scan results today for my mum today, hope everyone in the same position this week has good news. And a huge happy birthday to my mum today too
Love sian
Xxx
nicky08
Community Champion

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Thanks again for the update chocolates and please send on my speedy recovery wishes to Helen. Have got my angry eyes ready along with everyone else so by now her oncologist should know he's in big trouble!
Take care everyone else getting ready for scans, results or changes in treatment and hoping that all those that are stable with their current treatment stay that way 🙂
Nicky x

Marie123
Member

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Hi Everyone,

I'm new to this, but I will get my angry eyes up and running today. Thinking of Sheila and all having treatment this week.

Love Marie

 

 

 

belinda
Member

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Thank you for the update Chocolates. X
Dusting off my angry eyes ready, hope you get some answers soon Helen. X
bertie1
Member

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Hi chocolates thanks for the update on Helen send her my love and hope she gets better soon
Kaye xx