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Bone mets - please join in

funnyface
Community Champion

Re: Bone mets - please join in

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!

Barton
Member

Re: Bone mets - please join in

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

Marie123
Member

Re: Bone mets - please join in

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
springsummer
Member

Re: Bone mets - please join in

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 

Porkie
Member

Re: Bone mets - please join in

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

roxy12
Member

Re: Bone mets - please join in

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

Chocolates
Member

Re: Bone mets - please join in

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
roxy12
Member

Re: Bone mets - please join in

Whoops, lost that post somehow. Will try later. Xxx

roxy12
Member

Re: Bone mets - please join in

 
rosie53
Member

Re: Bone mets - please join in

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
rosie53
Member

Re: Bone mets - please join in

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
funnyface
Community Champion

Re: Bone mets - please join in

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!

belinda
Member

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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
Barton
Member

Re: Bone mets - please join in

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

Marie123
Member

Re: Bone mets - please join in

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
Chocolates
Member

Re: Bone mets - please join in

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
JulieD
Community Champion

Re: Bone mets - please join in

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

LemonDrizzle
Member

Re: Bone mets - please join in

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
nicky08
Community Champion

Re: Bone mets - please join in

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

roxy12
Member

Re: Bone mets - please join in

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

 

 

Chocolates
Member

Re: Bone mets - please join in

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
nicky08
Community Champion

Re: Bone mets - please join in

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

roxy12
Member

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

Faraway
Member

Re: Bone mets - please join in

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
stresshead
Member

Re: Bone mets - please join in

so sorry to hear this...poor Helen. Lucky onc!!!! give her my love.xx
stresshead
Member

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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

funnyface
Community Champion

Re: Bone mets - please join in

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

Mitch23
Member

Re: Bone mets - please join in

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
bertie1
Member

Re: Bone mets - please join in

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
Lynnq
Member

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Oh poor Helen, bless her.....she doesn't seem to get any breaks does she?
rosie53
Member

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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
LemonDrizzle
Member

Re: Bone mets - please join in

Thanks for letting us know about Helen. I can't believe her onc is on holiday again, he's hardly ever there for our Helen and she deserves so much better. Hoping she's not in for as long as last time and they sort it out properly. Sending love and hugs to you Helen x
Barton
Member

Re: Bone mets - please join in

So sorry to hear poor Helen is back in hospital! I only hope they treat her better this time (ie no Poogate!!!) and someone with some clout comes to see her, seeing as her Basil Fawlty of an Onc is on hols again! Good luck to everyone else (sorry to hear about poor Bev's experience, too). Chocolate here I come this weekend. Chocolate for breakfast on Sunday, definitely! Hugs. Barton.x

nicky08
Community Champion

Re: Bone mets - please join in

Sorry to hear that Helen is back in hospital, just what she wouldn't have wanted I'm sure. Let's hope this time around the underlying reason is identified and treated quickly and she is home ASAP. Sending her my love and a spare pair of angry eyes for her own use 😉 Loved her emoticon btw, it's lovely to see the real Helen 🙂
Hi to everyone else. Belinda I hope the transfusion gives you some oomph and you feel more energy soon. Must really take its toll having weekly chemo so I'm not sure how low you will feel after treatment today (I think).
To everyone who has said how distressing this is for our daughters, and sons, I am in exactly the same boat 😞 I felt so bad the other year when I had progression to my liver and had to be very frank with my two lovely daughters about my condition, it broke my heart for my eldest to say she thinks about it every single day and my youngest to say similar and that she has been living with this as part of her life ever since she was 11 - so sad 😞 However as a Positive note we are all spending Easter together and with my wider family circle for a different celebration which will be so nice. Chocolate and Hot Cross Buns all round I'd say 🙂
Take care everyone, hoping treatment is being kind to those who I've not mentioned already and a Happy Easter whatever you are doing.
Nicky x

belinda
Member

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Oh no, I'm so sorry to hear this. Hoping Helen has her M and M's and is home soon,asap, a much shorter stay than last time. Thank you Chocs. X
Marie123
Member

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So sorry to hear this, please send her my love. I will be thinking of her. Marie xxx
Chocolates
Member

Re: Bone mets - please join in

Hi ladies, just a quick post to let you know our lovely Helen is back in hospital. She was admitted last night as temp high again. She hoped that they would give her some ab's and she would be allowed home today but alas she has to stay in. There is talk of an X-ray but not sure if she has had that yet. And guess what - her onc is on holiday!!! I'll keep you updated as I hear more news. She sends everyone her love. xxx
Hope everyone who is going away has a good break - thoroughly deserved.
Huge hugs,
Hxxx
LemonDrizzle
Member

Re: Bone mets - please join in

Good afternoon ladies
Lovely words Stresshead and Janette, I could cry every time I think of my daughter and what you say sums up exactly how I feel.
Marie, my thoughts about the Easter weekend too. We're just off for a break in the Lakes and only thinking of this horrible disease when I have to come back to reality for treatment at the end of next week.
Belinda, glad transfusion has made you feel brighter, hope it lasts a long time.
Kaye, have a lovely weekend away and relax as much as you can.
Chocolates, you'd better be having a break from school now and not doing anything related to it!
Hope Helen and Bev had a good night.
Lynne, you're not being a nuisance and never forget it.
Love to everyone
LD x
rosie53
Member

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Marie, i agree with you, i only said to my hubby this morning, lets have a good easter wkend relax with lots of chocolate and a few cheeky glasses of wine 🙂 sounds like a plan!!
Janette x
rosie53
Member

Re: Bone mets - please join in

Hi ladies
Stresshead, i totally agree with everything you have said re: how it effects the whole family, my daughter is 23 and it breaks my heart to think i may not be here to see her walk down the aisle and be there for her when she has children, i really have to push it so far to the back of my mind, the last 12 months since my mets dx she has been such a strong support to me and i am so proud of her....need to stop there cos the tears are coming!!
Lynne, you are not mithering you are "being heard" me and my hubby mithered my Onc, bcn and scan dept last wk to get scans and appt brought forward, should not have to do this and you can tell they don't like it but TOUGH luck, you have to think of number 1 ladies!!!
Hugs to all Janette x x
Marie123
Member

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No, No, No you are NOT a nuisance, just someone in a very vulnerable place. I am now going to get my polish out to make sure my angry eyes are A1.

Lovely ladies can I suggest that we allow ourselves this bank holiday off from our troubles, I know this is really hard, but I am really going to try enjoy family time and chocolate and not alow ****** to spoil it. Hoping the Easter bunny has remembered me (he had better or there will be trouble ).

 

Hugs and chocolate to you all

Mariexxxxx

 

Lynnq
Member

Re: Bone mets - please join in

Hi Janette. Hope you're feeling better today after you long day yesterday.

I have the same scan on the 13th .. My injection is at 1200 and the scan at 1500 so not as late as yours.....but I have to have an x-ray as well..I assume that they will do that between the two??

Saw my onc last week. I have a pain in my groin which, despite the change of brand of Letrozole - hasn't got any better, and sometimes keeps me awake I usually take paracetamol and a sleeping tablet when this happens.Other joint pains have improved a little since the change in brand. I take naproxen and paracetamol for my boney aches and pains.......and on the whole manage okay on them. Far fewer problems than many of you lovely ladies

The other onc I saw 6 months ago said a scan was not necessary since my TMs were not going up.....after much persuasion he did a CT scan which showed stable....for which I am very grateful, but that would not have shown my hip/groin area.

When I had my first bone scan over two years ago my groin/hip did not show any mets and since the TMs have fallien and Letrozole appears to be holding the cancer he said he didn't think this pain was cancer related.

The onc I saw last week has different views on TMs and he arranged the full bone scan and x.ray.
I can see where the first onc is coming from and I do understand what he is telling me - however even if the pain is not cancer related it must be something and I would like to know what it is....even if just for reassurance.
Why do I feel as if I am being a nuiscance?
stresshead
Member

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Just seen this post Helen..they use amytriptyline for nerve pain..my husband had it after a throat op. You get both benefits !! xx
stresshead
Member

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Helen, so glad to hear you are feeling a little better about things..its unbelievable the problems you have had. You are a very special lady. Take care.x

stresshead
Member

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Sianie, please dont feel guilty for ranting on here and you never need to apologise. I know exactly how your mum feels and i have a pretty good idea of how you feel as i too have a beautiful caring daughter and it truly breaks my heart to know what i am putting her through. Everyone tells me i shouldnt feel guilty..i didnt ask for this...but you cant help it. I'm sure all your mum wants to do is crawl into a hole and not be a worry to anyone..thats certainyl how i feel a lot of the time. I'm sure she will rally soon...i know its very hard on you but all you can do is just keep loving her and coaxing her. Believe me, however bad things get she has a daughter who she loves very much and of whom she is very proud!! People who have no experience of this disease have no idea of the devastting effect it has on the whole family.

Sending love and hugs to everyone.x

bertie1
Member

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Hi ladies hope we're all doing ok,Helen glad they've given you something for your pain hope it eases.Belinda it's good you had your transfusion it gives you a bit more energy,hope the chemo doesn't knock it back down.
Janette it is always an anxious time when we are having scans etc.
Well had my 9th lot of Cape yesterday but they are going to scan my head due to lots of pain I've been having at back of head,just hope it's nothing to worry about this is just like a roller coaster ride.
Well I'm off down the caravan tomorrow for four days hope the weather picks up a bit.
Have alovely Easter all
Love to you all
Kaye xxx
belinda
Member

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Yes with you there ff, I miss Xeloda. 🙂 Not convinced this chemo is doing much for me either. Let's hope we have an easier summer. Take care! xxx
funnyface
Community Champion

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Belinda, I hope the chemo doesn't knock it down on Friday. You need a little break. I'm not liking my chemo. Every time on my second dose of the cycle my white count is down, so I have to go back the next day for the neulasta. Just tired of infusions and injections. Sure miss just swallowing xeloda. I wish they had more oral chemos. 

belinda
Member

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I did, thank you, funnyface, yes I'm feeling brighter and hoping I have a little gap before I need another one but chemo again on Friday. XXXX
funnyface
Community Champion

Re: Bone mets - please join in

Belinda, Hope you got that transfusion and feel better.