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Bone mets - please join in

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Re: Bone mets - please join in

Good morning everyone..just wanted to come on and wish everyone a good Easter Day, especially those who are struggling Helen, Bev, Faraway et al. It is task sometimes to keep up with all of the people. Hope you're feeling better each day Sheila after your wbr.

Sometimes I read posts and spend ages wondering what I should 'say'. Then one of you other lovely ladies come along and say just the right thing......

I don't post too often but I think about you all constantly..I love to read the good news and also to read the comforting and reassuring posts as well - when the not so good things happen.
Hugs to everyone whether I have mentioned your name or not
Xxx
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Hope Helen soon feels much better chocolates. Thinking about her and wishing her all the best for a speedy recovery. All my love and hugs. Sheila xx

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Thank you Chocs. I hope Helen finds she starts to improve today and she can turn that corner. Sending love, strength and my very best wishes. XXXX
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Happy Easter ladies. Hope everyone can manage some time to put the big c in a box today and enjoy some quality time with family and friends. To those who are struggling we are all here to hold your hand and support you.
Helen is still very poorly, there is not real improvement and she is struggling to breathe. It's a difficult time. She sends everyone her love for today and misses you all very much. I'm really hoping thwt today she'll turn the corner and begin to feel a bit better. I said that we would all pop in over the day to sit with her.
Bev, I'm wishing you much love and a peaceful and restful day at home with your family. Sheila, hope you're getting stronger each day.
Huge hugs to everyone,
Hxxx
Community Champion

Re: Bone mets - please join in

Good Morning lovely ladies
. Helen hope you had a good night, Bev thinking of you.
Happy Easter everyone , hope you all have a lovely chocolate day.
Marie. Xxxxx
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Happy Easter ladies.
Hoping Helen has had good night and is feeling a little better today.
Bev, hope you are also improving, sending HUGE hugs to both of you.
Hope everyone else is ok and are enjoying the Easter wkend.
Hugs Janette x x
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Having just read the posts from yesterday I'm hoping Helen is feeling better today and improving quickly. Sending positive vibes and huge hugs to both her and Bev. Happy Easter wishes to everyone and hope that anyone struggling with this horrible disease or the side effects of treatment at the moment gets some respite from it all.
Nicky x
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Very best wishes to Helen; hope they manage to get a handle on what is happening very soon.

Bev, thinking of you too; so sorry you had such a frightening experience - at least they are getting moving soon with the rads and I hope that they are manageable and effective, and that you can then try the next chemo. We all have such different responses to these treatments that I like to think that while there are options left there is always hope for improvement.

 

To Faraway and 3network3, I've just started Fulvestrant recently, along with a trial drug (something similar to everolimus). Had some nausea for a few days after the first dose but not enough to need anti-emetics. Nothing noticeable after the second dose (apart from minor discomfort at the injection sites). So will be interested to see what happens next week with the 3rd dose. Not sure if I'll actually be on it for very long because of the constraints of the trial - but my hospital does not pay for Fulvestrant normally (and neither does my second opinion hospital), so the only way to try it was on a trial and it seemed like it was worht a try as I've used up the other main hormonal treatments. Have you noticed any other side effects?

 

Tournesol x

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Faraway ... I'm in a similar situation as you, I'm 45 and had BC in Nov 2011 and was diagnosed with bone mets five weeks ago.  I'm also on Faslodex now (was on Tamoxifen, but they took my ovaries out last year) and so I was on Letrozole.  It's not that you can't try aromatase inhibitors if Faslodex shouldn't work, it' just that they might also not be effective.   But like with everything else in cancer treatment, it is a matter of trial

.

I suffer from terrible sickness after the Faslodex, will have to ask for something against it next time.  What SE's do you suffer from?

 

Love from Tine x   

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Sending HUGE hugs and love to Helen, please pass it on chocs.
Love Janette x x
Jam
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Special hugs to Helen and Bev and best wishes to everyone else xx
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Thinking of Helen and her family and wishing her all the very best.xx

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Thinking of Bev and Helen and sending lots of love and hoping for them to feel better soon and love to all the other brave ladies on here love Macie x x x
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Sending love and all the positive vibes I can to Helen who really does deserve some good news. Thanks Chocolates.
Thinking of you Bev too
LD x
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Dear Chocolates you are a star, thank you for letting us know. X
Sending Helen all my very best wishes, thinking of you lovely. X
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Ladies, I will pass on all yur messages. Haven't text since this morning as don't want to disturb her but will text a bit later - if I hear anything I'll let you know. Difficult times but Helen will get through this - she's done it before and she will do it again. xx
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Pressed post too early! What more can I say other than I am thinking of you all, keep hoping and taking all the support offered - we are all worth it. Big hugs xx
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My thoughts and prayers are with Helen and Bev too xxoxx
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Chocolates, Please tell Helen I'm thinking of her. I'm sorry to hear she took a bad turn. Sure wish she could get a break. 

 

Bev, You are on my mind too!

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Barton here adding my best wishes, hopes and good thoughts for both Helen and Bev. So sorry to hear Helen has taken a nasty turn. Hugs, Barton.x

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Hi Chocolates, please send my best wishes to Helen.
Helen and Bev you are both on my prayer list, please take care. Sending positive vibes and hugs Marie xxx
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hello Chocolates, please give all my love to helen. i have been checking the site for updates on her and Bev. Please let her know I am thinking of her and of you Bev as well as you have both been so positive and welcoming on this site.  SS 

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Chocolates - please send lots of positive vibes from me too. Helen has been through so much its just not fair but I will be thinking of her this Easter weekend and hoping that she soon is on the mend,xx

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So sorry to hear about poor Helen.. She is very strong and I'm sure if they get this infection under control she will be much better. Please give her my love chocolates and loads of positive vibes. Lots of Sheila. Xxx

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Ladies, our lovely Helen is not so good. She became quite ill last night and has stayed the same. Lots of positive vibes for Helen please. It's so hard, yesterday afternoon we were having a good laugh and jokes about the hospital but she took a turn for the worse a bit later. I'll update you once I hear anything more.
Janette, I hope the referral is a positive experience for you. I hate how this affects us. Sheila, hope you are resting. Bev, how are you doing?
Hello everyone else, hopefully ready for the Easter break.
Huge hugs,
Hxxx
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Whoops, lost that post somehow. Will try later. Xxx

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By the way meant to mention, i have been referred to the Beechwood Care centre in Stockport as i have been struggling with the big C lately, heard lots of good things about it so really looking forward to my first appt on Friday.
Janette x
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Morning ladies,
Chocolates,thank you for keeping us updated on our lovely Helen, please add me to the list with love and hugs to her.
Shelia, great to hear you have had your last one, you take take it easy, eat lots of hot cross buns and easter eggs :-)
Hope you all have a lovely Easter and over indulged on the chocolate :-)
take care ladies, love and hugs Janette x x
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Yahoo Sheila! Now rest up and let your daughter spoil you for a bit!!

 

Helen, I can't believe they missed your breakfast. I'm glad your temperature is down and I hope you escape soon!

 

Thinking of you Bev!

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Oh do hope Helen is home tomorrow. X
That's great you have your daughter living so close Sheila. X
Happy Easter all. X
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Hello ladies. Chocolates, thanks for update on Helen. Looking forward to her stories, but sorry that she obviously had to suffer to get them!
Faraway, sorry you are feeling down but there are other treatments out there and more coming along all the time. Harder to do than say, but try to keep your chin up.
Hope everyone else is doing ok. Eat that chocolate! Hugs, Barton.x
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Thanks for the update. So happy that Helen is feeling better, fingers crossed she will be home soon. Hope everyone is feeling okay. Hope the Easter bunny has lots of choc for everyone. Take care Marie xxx
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Ladies, Helen's temp is down since lunchtime which is really good news. Fingers crossed she's out tomorrow. Sheila she's so pleased you've finished and sends her love. She again has some stories to tell which I've told her to post about when she's out. However, she is definitely in faulty towers again.

Will update when I hear more.
Huge hugs,
Hxxxx
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Well done Sheila! Glad you've completed the course and hoping the SE's are not too bad. I know a few women who've had WBR and they felt the fatigue was the worst, so listen to your body and rest.

 

Thanks for update Chocolates. Poor helen! Please add my love to the list to be passed on, hopefully she will feel the love and support from here and it will give her an added strength.

 

Faraway, I'm sorry you are feeling low but can understand but there are still treatments out there for you and there are new drugs being developed and trialled sotry to hold on to that

 

Misty dull day here today. Hope all my friends here are having a reasonable day and you all have a good Easter with at least some chocolate! xx

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Glad you've finished Sheila, rest as much as you can and have a lovely weekend. Thanks again Chocolates for the update on Helen - she's unfortunately continuing to have a horrible time. Sending lots of positive vibes her way
LD x
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Hi Sheila
Hooray, the last one is done and dusted :-) I hope you don't suffer too much with fatigue and the effects of the steroids, I think you are probably on quite a high dose to begin with. Look after yourself, or better still get someone else like your lovely daughter to look after you:-) Hope you have a relaxing weekend, not too many side effects but plenty of chocolate. Keep us up to date with how you are doing, I hope the calcium levels come down soon and know we are all here to support you.
Nicky x
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Thanks so much chocolates. Am now home and finished with wbr. Have been wobbly but I am putting that down to calcium levels now. think we will see how I am now I am back on treatment for this. 

Poor Helen! I hope they sort her out quickly. Let us know how she is getting on later won't you?

I hope you have a really nice Easter chocolates. I won't be doing much but my daughter is coming round. She only lives round the corner and she is a massive support.

Well I think another dose is called for before teatime. Take care.

Lots of love. Sheila. Xxx

 

 

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Hi Sheila - yay your last one. Well done - can't imagine how difficult this has all been for yu. Sorry to hear the old calcium levels are rising again. Glad scans brought forward so they can get to the bottom of it all quickly. Now rest up lovely lady - by the time yu read this yu will have finished wbr. I'll pass on your love to Helen. She has her own room this time so won't be disturbed as much - but as she pointed out this morning they forgot to serve her breakfast. Nurse said oh we forgot about you! Her blood pressure has dropped and struggling breathing wise again so similar to before. Temp still raised so she is not going home just yet. I'll check in with her again later and then update everyone again.

Huge hugs,
Hxxx
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Hi Faraway
Sorry to hear you are feeling a bit low at the moment. From reading your post I guess you are hormone positive, HER2 negative? I was the same for nearly 10 years from the time of my primary to my secondary dx. However when my mets spread to my liver I had a liver biopsy done and my receptor status for HER2 is now positive. This has opened up other treatment options for me but also meant that some of the other treatments I might have had wouldn't have worked so well. Have you had a liver biopsy done, or considered it? My onc was really surprised that my status had changed as I'd always presented as a 'typical' case for hormone positive/ HER2 negative BC (if there is such a thing). Also there is still letrozole available as a hormone treatment, have you had this or is there any reason why your onc thinks you can't? Sorry I can't be of more help, and it may be a bit slow getting any other answers over this bank holiday weekend as it's always a bit quiet on here when everyone is busy, but hoping you know that we are all here to offer support and help as much as we can. It is so difficult to talk to loved ones about our fears as I suppose we don't want to burden them or make our fears more of a reality so please come back and share anything with us, we all understand how scary this bl**dy disease can be.
Nicky x
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Re: Bone mets - please join in

Morning everyone,

Jjust a quick post a I am going for last wbr today!! I have been okay except for the tiredness. However my calcium is rising and my liver enzymes are slightly higher so onc bringing scan forward and will probably be going onto eribulin. Will have bloods done next week.

 

Chocolates, thanks for passing on the news about Helen. Would you pass on my love and hugsxxx

 

Bev, I'm sorry you had such a bad time this week. I will be finished with my radiotherapy today and apart from bad fatigue I have been okay. You are only on tables for a few minutes.

 

Belinda, I hope the blood transfusion helps to make you feel much better and you have a lovely Easter.

 

 

 

 

Natalie, I hope you have managed to get over your bad day and and that your scan results are good. Will have to go as it takes me so long to get ready.

I'm sorry if I have missed any one but I wish you all a lovely Easter and that you all have a trouble free time.

 

Lots off love.Sheila. xxxx

 

I

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Hi All, it has been a while since I commented on here, so many ladies it was hard to keep up with everyone. I need some help, diagnosed bc in 2012 two weeks later found in bones, 6 months ago found in liver, been on Tamoxifen, Arimedex and Exemestane and two chemos FEC & Docetaxel now on Faslodex suffering with SE badly Onc said no more tablets left for me and only 3/4 lots of chemo so I am thinking I havent got long left. Feeling very scared and alone, I thought they had loads of options for treatment. i am 43 live with my hubby but find these things hard to share because i can see the pain in his eyes. Any advice would be appreciated x
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so sorry to hear this...poor Helen. Lucky onc!!!! give her my love.xx
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Janette, so with you on that one. I find that is  the worst part of this ***** disease. My daughter is same age and although we have been lucky enough to see our children grow into beautiful people the tears never stopwhen we think of what we could miss....overwhelms me every time i look at her. It never leaves you does it? x

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Helen feeling so bad for you. Hope they get to the bottom of this quickly!! Don't let them wave you off, you push for answers and treatment. FF

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Helen am thinking of you and hoping you are out of hospital and back home ASAP. You've had so much to deal with lately

Sending huge Geordie hugs! Xxx
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Hi ladies,sorry to hear Helens back in hosp ,let's hope she she's someone decent this time seems her Onc is never around.
Lovely words stress head and Janette ,I feel the same when I think about my three sons my youngest was only 10 when Iwas dianosed with primary that was 15 years ago.
Belinda glad your transfusion has ade you feel brighter,I only said to my Bcn yesterday as a joke can I have transfusion just to give me more energy if only.
Chocolates hope you enjoy your break from school,give you chance to recharge your batteries .
Lemon drizzle have a lovely weekend at the lakes.
Hope all you lovely ladies have a good Easter and get lots of eggs
Take care all
Kaye xxx
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Oh poor Helen, bless her.....she doesn't seem to get any breaks does she?
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Aww no, so sorry to Helen is back in hosptital, flipping eck that lady needs a break!!
Sending you huge hugs Helen.
Janette x x