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Bone mets - please join in

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Re: Bone mets - please join in

Hi ladies,
Good to hear Helen is feeling a little better today....long may it last.
Hope everyone is ok on this glorious day 🙂
hugs Janette x x
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Although I don't know Helen as I'm new to this thread it's still good to hear she is been seen to now and hopefully improving.
I had my ninth session of rads to spine / pelvis today, another six to go. I suffer from terrible nausea and loss of appetite. Wonder if its from the Faslodex last week or because I have taken four weeks of ibuprofen (with omeprazole though) or is it rads? I'm going to see a couple of doctors this week, maybe they're is something they can give me.

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afternoon ladies what alovely day love the sunshine.Only now catching up with posts as I've been away to the caravan on the weekend.Chocolates thanks for the update on Helen,sorry to hear she's back in hosp but now she's seen the doctor they will hopefully get her sorted ,she's been having a rough time lately send her all my love .Hope all you other ladies are ok this thread is quite busy lately,Well I've done lots of washing today and cleaned the house but my son gets home tomorrow after atrip to Australia so I'm sure he'll hve plenty of washing for me to do .Hope you all have alovely afternoon
Take care all
Kaye xxx
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Ah now the sun is shining, it has been big grey skies here over the weekend.
Hope Helen is now going to feel stronger and can be home asap. She must be so fed up with hospital life. Sending cyber M and M's, Elsa dresses and colouring pens via all her hubbies. XXX
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Thanks chocolates for your usual update. I have been thinking of Helen over the weekend and how frustrated she must be that a doctor hadn't seen her let alone an oncologist. It must be a huge inconvenience to the NHS that anyone gets taken ill over the weekend, grrrrrr. Angry eyes!! Also it's incredible that, as this happened last time, there hasn't been a strategy in place. Anyway, I hope she is on the mend so please pass on my thoughts and I hope that something can be done about this reaction or whatever it is to the chemo.
Hugs to Bev as well, I have been thinking of you. I expect you must have some busy times coming up wi rads planning so please know that we are all thinking of you and holding your hand.
Welcome Pippie to the secondaries part of the forum, somewhere that none of us wanted to be in 😞 We do however understand exactly how you feel and how frustrating this time can be before you have a definite treatment plans and that your team is dragging its feet. It could be that they have not been able to perform a bone biopsy therefore looked at doing a lung one, which in itself can be difficult. I hope you get some answers and a plan soon but keep coming back here and asking questions, someone is always able to offer their advice and support.
Hi to everyone I've not mentioned, what a change in the weather isn't it? Does make you feel a bit better though when the sun is shining and the flowers are out, hope you all hd a good Easter and just enough chocolate 😉
Nicky x

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Morning ladies, lovely day here again. Hope the sun is bringing some much needed cheer to us all. Hope everyone is doing ok. Well I think our lovely Helen has turned a corner. She is feeling a bit better this morning. The Dr has been and changed her ab to try and get rid of this infection. Temp still spiking but I think it's good news thwt Helen feels better in herself. I said I'll check in later with her to see how she feels.

Huge hugs everyone,
Hxxxx
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Good morning everyone...

Pippie there will be PALS at your hospital, i am sure that they are at all hospitals. It is a liaison service for patients. I have used them once a couple of years ago and they were very effective. I had phone calls and explanations quite quickly. If you don't know their number then you can ring the hospital switchboard and ask....my BCN gave me it......just to tell someone all of that will help and I am sure that they will clarify things with the different departments etc. you will also, as you have already find support here. Let us know how you get on.
Chocolates, thanks for the updates on Helen, bless her, this 24hr Nhs those politicians keep talking about can't come quickly enough.....surely she will see a doctor soon. ..... And as Belinda suggested PALS may a help for her.
Best wishes to everyone else, hope you all had a good Easter.....we have sunshine here in Yorkshire.......
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Hi all just hopped in to say happy Easter to everyone and hope all enjoyed the lovely weather we have had and stuffed full of chocolates xxx
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Hi Chocs, I actually thought of PALS for helping Helen, especially as she is in hospital right now. Link here,
http://www.nhs.uk/chq/Pages/1082.aspx?CategoryID=68&SubCategoryID=153
Has no doctor visited yet??!! Thanks, as ever, for keeping us in the picture. X
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Morning ladies and a big welcome to pippie. This group is amazing and hopefully you'll be posting lots and not worried about joining in. Sorry to hear about your experiences - other ladies might be able to help me but isn't there something called pals at each hospital who you can go to to complain. This might be worth looking in to as each delay causes more stress and worry. You have enough to cope with at the moment without dealing with all this. I hope you find some answers this week.
Hello everyone else - lovely day here - sun is shining - washing out - lovely. Well Helen is still very poorly - but seems a bit brighter today in herself. She is really hoping that a Dr comes to see her tomorrow as abs not working yet offering nothing else. Fingers crossed things change today and she gets through this. Don't really know what to suggest next - she's already changed her onc and her hospital but still very poor care. Any suggestions to pass on gratefully received. As ever she sends her love and has thanked everyone for coming to cyber visit her. She says she can feel our strength pulling her through.
Huge hugs everyone,
Hxxx
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Hello and welcome Pippie
There are other ladies who have similar experiences to you when it comes to being messed about with appts, scans etc so feel reassured that you're not alone - it doesn't mean it's right though and don't be afraid to chase things you need. If youre not feeling upto doing it get someone else who won't be fobbed off to do it for you. Nobody else understands how awful this early stage in the dx is and that you need to know exactly what you're dealing with.
Helen and Bev, hope you both had a good night.
Hoping everyone else can enjoy the bank holiday and carry on eating all your Easter goodies
LD x
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Hi Pippie and welcome to the BCC forums where I am sure the support will be a big help to you

In addition, our helpliners are on hand with further practical and emotional support on 0808 800 6000 and lines re open tomorrow after the BH 9-5 weekdays and 10-2 Saturdays so please feel free to call to talk your concerns over

Here's a link to further support ideas and information about secondary breast cancer on the BCC site:

https://www.breastcancercare.org.uk/secondaries

Take care
Lucy BCC

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Pippie, please excuse my manners. Welcome to the forum. We are sorry you have had to join us. I have found so much support and friendship in the short time I've been on the forum. Mxxx
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Hi Pippie, sorry you have had to join us but welcome, hope we can help support and advice you on dealing with this horrible disease.
I think so far you have been treated terribly, these people have no idea what this dx does to our heads (mind games) you need some answers and a treatment plan in place so you can start dealing with it. My primary was 2007 and mets dx in March last yr, i had bone biopsy on my spine to confirm the dx, i am now on tamoxifen, zoladex injections to put me into menopause and denosumab injection for my bones/pain.
Do you have a husband/partner who could help push things along for you as im sure at the moment your head is all over the place and aqte struggling to deal with it all, unfortunately there are a lot of us ladies on here that have had to kick and scream for treatment/scans etc.
Hope you get some answers soon.
Hi to all hope you have had a nice Easter with plenty of eggs 🙂
Helen/Bev sending you love and hugs.
Janette x x
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Hello lovely ladies, hope you all had a good Easter. Have eaten far too many hot cross bunnies, sorry buns and chocolate.

Helen hope you had a comfortable night, Bev thinking of you.

Pippie,I'm sorry to say that your expeirnce doesn't appear unusual. I have had treatment and operations cancelled the day before, after being told that they were absolutely essential. It is difficult to handle when you are feeling so vulnerable. Also phone calls not being returned, I just won't go there. Hang on in there , keep asking the questions . Write them down so you don't forget what you want to ask. Good luck.

Janette, I too am going for some help with the big C this week. So good luck with your appointment.

To eveyone having a difficult time be gentle with yourself.

Take care

Marie xxx

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Hi Ladies - I hope you don't mind me joining you, I have been in the wings for a fortnight reading your posts, plucking up courage to join in.

 

I was orignally diagnosed with BC primary in March 2012, then diagnosed with mets to my spine, ribs and lungs at the end of January this year.  So far, I don't know a lot about my diagnoisis due to being messed around with appointments etc.  I was told originally that I was to have a lung biopsy, this was then changed to a bone biopsy to my spine, this was cancelled the night before I was due to have it - due to a problem with my blood, to which I still don't know the out come of the blood test done on the 11th March nor my lung function test done in February.  I rang my BCN and asked her to have this discussed the MDT meeting which it was on the 25th March - I am now booked in to have a lung biopsy on the 8th April.  I have had 3 treatment planning appointments with my Onc that have had to be cancelled, as I haven't had a biopsy on my lung yet, and there isn't one booked as yet.

 

Please can you tell me if I am alone in being left hanging around like this, as I feel I have been given information that I can't do anything with, and nobody to discuss it with (I haven't told many people and don't want to until I know what I am dealing with). Smiley Sad

 

I hope you all have had a lovely easter, and eaten too may eggs.

 

Pippie

 

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Sorry to hear this Chocs. With it being the long weekend it must be even more frustrating. I hope Helen gets the care and attention she needs and asap. XXXX
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Hi ladies, Helen is much the same and has appreciated everyone popping in today as she is very down. She's frustrated with the lack of drs etc and pace at which things are happening. I've told her we are all sending her strength and positive vibes for which she is very grateful. I'll update you in the morning.

Hope everyone has had a good day and managed to enjoy some quality time - be it with friends or family.

Huge hugs,
Hxxx
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Chocolates, thank you for keeping us up to date about Helen, and sorry to hear she is still bad. Hoping with everyone else that she improves today. Bev, thinking of you too, and all other ladies. So sorry I can't remember everyones names, and forgive me if I don't mention your name, but I am still thinking of you all and wishing you all the best. Gentle cyber hugs to all who can bear them, and cyber-sitting with Helen for a little while (keeping very quiet so she can sleep and repair!). Hugs, Barton.x

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I am the same Lynnq not always sure when to add post but always try and keep up with what's happening. Usually just send hugs cos we all know all our sentiments are similar. Keep adding your thoughts Lynn. Have a lovely Easter xJanetx
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Lemon drizzle thank you. I hope the fatigue starts to ease now.

Nicky, I was on 4mg am and now on 2mg for one week then stop. Hope your scan goes well.

Julie thank you. Yes the fatigue is the worse. 

Belinda, hope you're feeling better after your transfusion. My daughter will be round shortly and will spoil me I'm sure.

Funny face, thank you. Hoping by next I will feel much less fatigue.

Chocolates looking forward to feeling better.meanwhile eating well and enjoying food..

Lynn, thank you for your good wishes hope you're doing okay with treatment.

Jeanette hope they sort you at the Beachwood. It is really important. To have the right care.

Bev, hope you are feeling much better. My onc says that he has several patients 4to 5 years post wbr who are still doing well.

 

Hope I haven't missed anybody out. Wishing you a a very happy and trouble free Easter.. Hope I  don't lose this post!

 

Lots of love to each and every one of you xxxxxx

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Happy Easter everyone. Hope you've all been visited by the Easter bunny and can enjoy the eggs and hot cross buns on this lovely day.
I'm popping in to sit with Helen taking a great big M and Ms Easter egg for her to enjoy when she can. Looking forward to seeing Chocs and some of you as we all visit and hold her hand.
Bev, Sheila, Janette and Faraway, you're not forgotten - hoping you're all feeling stronger today.
LD x
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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
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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
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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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