66975members
353449posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Bone mets - please join in

Highlighted
Member

Re: Bone mets - please join in

I watched The C Word last night, Lisa Lynch's life. In tears, of course, and I had made sure I watched it on my own. If anyone else is unsure whether to watch there is no death bed scene, my initial concern was there might be with sad music, soft focus, really over egging something already sad enough. I thought it summed up life with secondaries, chemo, uncertainty really well. Really true to life for me was the meet up at the beach with other young women stage 4. I used to do the same every summer, good times, until there was just me left. It's on BBC I player.
Highlighted
Member

Re: Bone mets - please join in

Morning ladies, feeling so sad today, just been reading about Rebecca Ferdinand, just want to scream and cry!!! 😞

Hate this horrible, nasty, ugly disease, that poor woman leaves behind a husband and young family it's so unfair.....RIP Rebecca.

Sorry for the rant ladies it's just at times like this it brings reality home and scares the **bleep** out of me!!!

Hugs Janette xxxxxxx 

 

Highlighted
Member

Re: Bone mets - please join in

Such sad news of Rebecca Ferdinand today. Too young, too soon.
Highlighted
Member

Re: Bone mets - please join in

Marie,you have worn the poor man out with all you ehmmm.."playing"
Hugs,Helen xxx
Highlighted
Member

Re: Bone mets - please join in

Hello Siani....sorry you're here, but welcome..i was diagnosed primary Oct 2012 and bone mets Nov 2012 so just about exactly a year ahead of you. I am on Letrozole and Zometa infusion every four weeks along with Adcal.....i also had a bilateral...but don't want a reconstruction I am stable and have been for two years. I thought that my life was over but far from it.....lots of support here on the forum, and a good laugh sometimes as well...
Highlighted
Community Champion

Re: Bone mets - please join in

Hello Siani, we were both diagnosed at the same time for bc and sbc I've had different treatment to you , but that's the nature of this ****** illness.

I've voted for the sbc ribbon , fingers crossed for a successful campaign. Thank you to all who have worked for this.

 

End of Poldark era

After receiving a letter from the BBC . I carefully tissued wrapped Ross and sent him back to costume drama land. On the understanding he will be returned to me next year. I have put my corsets and riding boots in the loft and am  fully back to 2015 .

I was hoping to keep the quads, but due to Chocolates    'moonshine ' incident with them and the Panaroma programme on ' Drink problems in early years '(they did look cute though!). my lovely quads are now in a reform nursery.

It has been quite a busy couple of months. Thank goodness the OH has no idea what has been going on.

 

Wishing you all a good ,  restful bank holiday,

Hugs Marie xxx

 

Highlighted
Member

Re: Bone mets - please join in

Welcome Siani, sorry you have to join us but we are a supportive bunch. Thank you for the update on Chris Julie. Hope Grandma and Grandaughter meet up very soon.
Enjoy the long weekend everyone. XXX
Highlighted
Member

Re: Bone mets - please join in

Julie, 

Thanks for the update on Chris, please do send her my love when you are next in touch. 

Sophie

xxx

Highlighted
Member

Re: Bone mets - please join in

Julie ,thank you so much for the update about Chris xxx oh,I'm so pleased her granddaughter has been born and such a beautiful name. Hopefully it won't be long until Chris can see her. Please pass on all our love to Chris she is always in our thoughts.
Hugs,Helen xxxx❤️❤️🍼

Sheila,please let us know how you are we are all worried.❤️❤️❤️❤️
Bev,missing you on here,hope you're back soon.❤️❤️❤️❤️
Tracy, I'm hoping you're on your hols as I know they were coming up❤️❤️❤️❤️
Hugs,Helen xxxxx
Highlighted
Community Champion

Re: Bone mets - please join in

Hello and welcome Siani, as Helen (2catlady) said we are a friendly bunch so please join in when you are ready.

 

Can I just remind everyone to vote for the Secondary/Mets pin. It's important we have our say and get the pin most of us want. Yo'll find it on the thread Yourthoughts please. I think this is the link  https://forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/Your-thoughts-please-Ideas-for...

 

Latest news on our Chris (Steris) is that she is still being taken care of at home. Her Grandaughter was born about a week ago but it was by c-section so Chris hasn't seen baby Darcy Willow yet. Despite being very tired a lot of the time Chris is still having special times with her lovely family and keeping smiling.

 

Bev, hope the fatigue is lessening. Sheila, hope you are getting back on the right road and are more comfortable.

 

Hope everyone is having as good a day as possible, love to you all xx

 

Highlighted
Member

Re: Bone mets - please join in

Welcome,siani, but so sorry you have to join up . We are a very friendly bunch and somewhat slightly mad!
We are here for advice,support lots of hugs and even a laugh.
We do tend to use this thread regardless of out mets as its an easy way for us to find each other and make sure everyone is okay. It's like a huge family of on here.

You can ask us anything as someone will know the answer. No,questions are trivial or daft so never worry about asking.
Huge hugs and welcome,Helen xxxxxxx
Highlighted
Member

Re: Bone mets - please join in

Hello all, new to the forums. I was diagnosed primary BC Oct 2013, bone mets Nov 2013. 18 weeks of Docetaxol with Herceptin, Pertuzamab & Zometa. Still on the last 3 every 3 weeks, zoladex injection every 4 weeks & Tamoxifen. Bilateral mx just over a year ago, due recon (hopefully) later this year. Guess that's me really x
Highlighted
Member

Re: Bone mets - please join in

Hi Stillhere
To use the PM service click on the users name you are messaging and a grey tab will come up on the right of the screen 'Send this user a private message'
Hope this helps
Best wishes
Lucy BCC

Highlighted
Member

Re: Bone mets - please join in

Hi stress head, I don't know how to PM but I've just picked up another 2 months worth of Cape and won't be scanned again for 4 months. I will have been on Cape for 26 months by then, on a one week on, one week off regime. Just had a scan which shows some increase in my hilar lymph node but it is smaller still than when I started.
The only thing I would add is that I only have a secondary in this one lymph node so that may influence the treatment. It's been a really easy chemo so I'm sad ill probably have to change treatments in September. It's definitely worth talking to your Onc again, or ask for a referral to the Marsden. Xx
Highlighted
Community Champion

Re: Bone mets - please join in

Hi Janette
I've always had my Denosumab injection in my stomach, absolutely no problems, no pain, no bleeding, all over in about 5 seconds. However the zoladex cattle prod was another story altogether 😞
Good luck and hope the pain goes away soon.
Nicky x

Highlighted
Community Champion

Re: Bone mets - please join in

Hi stresshead, I have read about your recent scan results on the treatments section so am sending you big hugs and support. I am very surprised your oncologist isn't up with the facts about Capecitabine, I do wonder sometimes what planet our oncologists live on as we seem to have far more up to date knowledge than they do! Well, that's my experience of my new onc, the previous one was fantastic, this one didn't even know which drugs had been dropped from the CDF plan recently until I told him! Unbelievable. Anyway I just wanted to add that I was on Capecitabine for 15 months until it stopped working for me in which time it reduced my liver mets and then kept them stable until a tiny new one popped up. This was not unexpected as I am now HER2+ so it was all a bit complicated however it did work well during that time. I know of the lady that Belinda has mentioned and she was very well known on this forum regarding her experience over 8 years on Cape. Why an Onocologist wouldn't be aware of this being possible I don't know. Is it worth seeking a second opinion regarding your treatment options as Cape obviously didn't stop working for you, it just got stopped! Good luck with everything.
Nicky x

Highlighted
Member

Re: Bone mets - please join in

Hi stresshead, will send you a PM about my experience and my late friend who was on Cape for over 8 years. Will send now, if you don't receive it please let me know. X
Highlighted
Member

Re: Bone mets - please join in

Hello lovely ladies...hope you are all feeling ok and coping with SE's etc. I wonder if i can 'pick your brains' as i have done with ladies on skin mets thread. I know many of you haev been on cpe indefinitely and i have mentioned that my onc is absolutely against this and doesnt seem to beeve me when i say i have seen people write it on this forum If you are one of these ladies (sorry cant remember who you are) would you please let me know...how long and what for....think you can PM me (not sure how it works) if you are prepared to say which hospital. Likewise, i have read several post about imiquimod cream for skin mets...if anyone has actually ben prescribed it can you let me know. My onc has never heard of it, cant prescribe it as its not on the list and says its 'probably american'. I was told i was NAD 4 weeks ago but skin mets ahve returned with a vengance (apparently they are not picked up by scans?!) so am now about to start erubilin. cant say i'm looking forward to it as its tough on bloods and hair but at least its another chance isnt it. Cyber hugs to all and many thanks for your help. x

Highlighted
Member

Re: Bone mets - please join in

Hi Natalie I have my inj in my arm. My regular nurse injects it very slowly and have hardly any pain at all but at christmas a different  nurse jabbed in the needle and pushed thd plunger really fast and it really hurt. I suppose its down to how you do it x

Highlighted
Member

Re: Bone mets - please join in

Hi Janette no pain at all from tummy jab done in a few seconds. One month they do it right hand side then next month left. Never even had a bruise. X
Highlighted
Member

Re: Bone mets - please join in

Thanks ladies 

Hugs Janette xxxx 

Highlighted
Community Champion

Re: Bone mets - please join in

I'm a tummy girl. 2 seconds job done.

Marie xxx

Highlighted
Member

Re: Bone mets - please join in

My oncology nurse also said it hurt less having the denosumab injection into your tummy. But I only have about 10 seconds of pain when it is actually injected and nothing further, so I still have the injection in my arm.

Highlighted
Member

Re: Bone mets - please join in

Janette, the onc nurse told me having it in arm can be painful . But having it in tummy is not. And she's right.
Also if you are in hospital and they give you those nasty stingy injections to stop blood clots. Ask for it in tummy too as it doesn't hurt! Having it in arm made me say very rude words!!
Hugs,Helen xxxx
Highlighted
Member

Re: Bone mets - please join in

Thanks Helen, Mairmaid, guna give it a go in my stomach next month, it has slightly eased a little as the day has gone on, mind you i have had para's every 4 hrs, naproxen and rubbed Voltarol gel in so should hope it has!!
One more quick question, does the Denosumab not hurt at all when you have it in your stomach? I am finding it more painful in my arm each month now, i wonder if its because it goes into the muscle?.....well there will be no problem with my stomach i havent had any muscle there for a long time 🙂
Hi to all, hugs Janette x x
Highlighted
Member

Re: Bone mets - please join in

Mermaid ,I was the same when I was on zometa too. I always knew I was ready for bone juice. So glad I'm on Denosumab now as all over in two minutes,no pain,no IV.
Hugs,Helen xxxxx
Highlighted
Member

Re: Bone mets - please join in

Hi Janette, I have mine in the tummy and don't even feel it and no discomfort after ...could be due to the roll of fat that they have to work with! Ouch I remember the huge cattle prod zoladex injection from years ago not nice.
Helen Interested in what you said about aches leading up to Denosumab. Last week I ached so bad but seems better since Monday's jab.
I don't post much ladies but I check in and it makes me feel less alone. Have been having quite a chuckle over the "Poldark Saga"! Stay well x
Highlighted
Member

Re: Bone mets - please join in

Janette, I always have mine in my tummy doesn't hurt at all its nothing like the zolodex injection!! I get very achey when I'm due my Denosumab though.
Hugs,Helen xxxxx
Highlighted
Member

Re: Bone mets - please join in

Thanks Nicky and Marie, I am convinced it's due to the denosumab injection, I have noticed each month I have it its getting more painful, might see about swapping places and having it in my stomach instead?? Have always avoided having it there as I have my  zoladex injection there on the same day that is like a flipping javelin 🙂 

Hugs Janette xxxxxxx 

Highlighted
Community Champion

Re: Bone mets - please join in

Hi Janette, I too suffer from pains in my shoilder and shoulder blade. When I told my onc she said it was the nature of the illness and to take pain killers. However as previously mentioned I have started physio. My physio said that my good posture was helping my back during the day , but by the evening the strain on my shoulders were making it ache. I now have a 'pulley' that fits over the door to stretch my shoulder muscles. It really has helped. Also I am not  'new age' but I have started wearing a haematite bangle. They are not expensive. Apparently they help with circulation. I am not normally a believer in these sorts of things, but I think this has helped.

Hope you are feeling better today.

Marie xxxx

Highlighted
Member

Re: Bone mets - please join in

 

Highlighted
Community Champion

Re: Bone mets - please join in

Hi Janette. Oddly I have had a very painful shoulder/arm on a few occasions recently but it only lasted about 2-3 days. I put it down to starting on hormone treatment as all the other meds I'm on I've been having for two years or more. However I also had started taking the AdCal supplements recently and I'm not sure if it's linked to those as I haven't bothered taking them up to now as my calcium levels are always good. I was only saying to OH that I will try them again once back from hols to see if its those that cause the problem as I haven't had it again since stopping the supplements. Very painful though, ouch.
Nicky x

Highlighted
Member

Re: Bone mets - please join in

Hi ladies, just want to pick your brains, for the last 2-3 wks i have been suffering on and off with a painful shoulder/arm but today it has got increasingly worse to the point i had to leave work early, i don't think it is mets related but am wondering if it is a side effect from the denosumab injection??? Has anyone suffered with this?
hugs Janette x x
Highlighted
Member

Re: Bone mets - please join in

Yay good to hear from you Bev. X
Good luck with your scans Nicky, enjoy the break! X
Exciting times for your family Lynn. X
Hope pain levels are manageable Helen. X
Hope everyone has some sunshine over the long weekend. I've put the heating on again in the evenings! X
Highlighted
Member

Re: Bone mets - please join in

Good afternoon everyone
Lovely to hear from you Bev, hoping the SEs start to let you feel more normal quickly
Hoping you're all having as good a week as you can, and as always thinking of those who are more poorly than others.
LD x
Highlighted
Member

Re: Bone mets - please join in

Bev - so good to hear from you!  Glad you are feeling a little better with the steroids - keep up the good work, and hope you are back to "normal" soon.

Helen - hope you have managed to get control of your pain - glad (???) you were able to have your chemo as planned - hope the se's behave themselves this time.

Everyone else - good luck with results, treatments, etc.

Hugs, Barton.x

 

PS Marie - it's time you took some responsibility for the behaviour of the quads!  No wonder they are naughty, after hearing what you and Ross got up to at the weekend in the hotel!!!  Stop handing them off to other people - you and Ross need to look after your own children!

 

Highlighted
Member

Re: Bone mets - please join in

Good morning,lovely ladies,

Yippee,Bev,so glad you've back xxxx .we were all worried about you. Just rest up now and let your body recover xxxx❤️❤️❤️❤️ I'm with Nicky,as long as we know your okay a smiley will do xxxxx

Lynn,great news for you and your daughter 🍼🍼🍼 . Xxx
It's a good job your granddaughter sorted those quads out!

Sheila,please let us know how you are even if it's just a smiley .we are missing you and we are worried.❤️❤️❤️❤️

Chris,always in our thoughts ❤️❤️❤️❤️

Huge hugs,Helen xxxxxxx
Highlighted
Member

Re: Bone mets - please join in

Morning ladies,

Bev lovely to hear from you,  sorry you have felt so rotten with SE's let's hope you're on the home straight now.

Well yesterday I was in sandals and tee shirt today it's back to my winter coat!!!! It has rained/snowed  here this morning....aah the great British weather.

Hope everyone is doing okay 

Hugs  Janette xxxxxxx 

Highlighted
Community Champion

Re: Bone mets - please join in

Hi ladies and it's great to hear from you Bev. As long as we know you are gradually feeling better I think we can all relax and not keep asking you to get in touch 😉 Just send us a smiley 🙂 I can understand how tired you must be with the after effects of rads plus chemo but I'm glad you have been given a boost by the steroids. Take it easy my dear, we are here to support you and thinking of you.
Lynn, that sounds so exciting for your daughter and for the whole family, a new grandson! I have friends who adopted a good few years back now, so know how precious this opportunity is and what a special time it will be. Just hope the quads aren't too drunk when they get introduced to the new arrival!
Hi to everyone else. We're grabbing another short break, very well timed as I have a CT scan the day before we go and get back a day or so before the results so I won't have much time to sit around fretting like I usually do. Just trying to pack in doing as much as possible between scans as I know how the results can change all of your plans depending on how good or bad they are!
Hoping everyone is coping with their treatments and side effects.
Rather chilly here although at least the sun is out, where did that warmth disappear to? Brrrrr.
Nicky x

Highlighted
Member

Re: Bone mets - please join in

Lovely to hear from you Bev. The first of many steps back to normality..
Glad you have lots of support from family snd friends...we'll all be thinking of you so just post when you have the time
Xx
Highlighted
Member

Re: Bone mets - please join in

Hi ladies...sorry for not being one here much lately. Its all down to having the chemo and rads at the same time....(er...who's brilliant idea was that???)
Now i know why my onc was so reluctant to do them both together. ...I've been so poorly the last few weeks with the side effects. The worst se's have come from the radiotherapy though not the chemo.
Never known fatigue like this and have had to spend most days since starting it in bed.
But onc started me back on steroids on the weekend and that's made a big differences. One step closer to normality!!
Hope everyone else is doing ok. I may not post on here as often but thats because I've had so many texts and emails from family and friends. ..and just been too tired to keep up and reply to everyone...my phone is constantly ringing or beeping i have had to keep it either on silent or switched off!
Had been wondering about our "regulars" ....Chocolates, helen, nicky, janette, lynnq, barton...and anyone I may have missed out.
I'm so touched by your lovely comments.
This is beginning to sound like an awards ceremony lol !!
Goodnight ladies...speak soon. Love bev xxxxx
Highlighted
Member

Re: Bone mets - please join in

Hello All..hope you're having a good day.

Hope you managed to get your chemo Helen..and that it all worked out with no more drama -

Had a visit from my daughter and granddaughter today (the quads were very good once my 3 year old gD put them in their place). See her regularly but tomorrow her and her husband and little girl are being introduced to their new son/brother...he is just over a year old and they hope to adopt him. Don't know if any if you are familiar with the adoption process but they like potential parents and siblings to bond exclusively for the first three or four weeks so won't see them, but will obviously speak every day on the phone. Exciting times, our first grandson, we have four grand daughters...
it has been nice here today but clouding over and a few drops of rain now....

The quads are being very good...just need a bit of routine ... Would have them for longer but a week will do.....sure that I can send them on with some improvement in their behaviour....
Highlighted
Member

Re: Bone mets - please join in

Afternoon ladies, hope you are keeping well, it's been a nice day here in Manchester.

Helen I hope you managed to get your chemo and didn't have any probs.

Bev, Faraway, Sheila thinking of you and hoping you are okay.

Hugs Janette xxxxxxx 

Highlighted
Member

Re: Bone mets - please join in

Good morning lovely ladies from a sunny but freezing NE. If I can see blue sky and sun I'm happy.☀️☀️❄️❄️

Well,I'm off for second part of chemo today. So I'm hoping I'll get it. I've taken parecetamol so I better not have a temp,I know naughty but I'm desperate 🙈🙉🙊

Now the only problem is actually getting there with this pain. Marie said I could use Ross' horse but it will be too giggly ,but thank you anyway🏥

.well as long as I don't breath,cough,laugh or cry and I've had enough meds to knock an elephant out🐘 I should survive car journey 🚙 .

Shiela and Bev all our love ❤️❤️ Please let us know how you are xxxxxx

Chris ❤️❤️❤️❤️❤️❤️

Well,I'm hoping my 8 min chemo does not take another 4 1/2 hours .
Huge hugs, Helen xxxxxxxx
Highlighted
Member

Re: Bone mets - please join in

Lynn - would be most beneficial if you could hold onto them for the week. Very busy here and I'm not good with all the publicity side. You handle it so well. Alternatively perhaps marie could have them for the week as she stated so clearly in the paper that she's missed them. Please give it some thought.

Hi everyone else - I'm thinking about the ironing so currently distracting myself with the forum. It will get done but it's the thought of it which makes me do everything else. I promise I'll start in a minute. Hope you've all had decent weekends. Weather dull but not too bad. Hope it's nice for the bank holiday.

Huge hugs to everyone. Really desperate for news now on Sheila - I've heard snippets re steris being comfortable and spending quality time with her family and seen some posts from Bev but no word from our Sheila. I really hope she's ok.

Huge hugs everyone,

Hxxxx
Highlighted
Member

Re: Bone mets - please join in

Hi Marie.....yes they were quite naughty, bit if a custard pie in the face for the Maitre D. Mind he did try to give them milk without the brandy, good job I sneaked in a bottle for them..
They're watching the marathon now. I expect that they'll be racing in it soon...

Hope everyone is as well as they can be. Helen hope you're coping okay, think of you a lot.
Also love to Bev and Sheila...
Highlighted
Community Champion

Re: Bone mets - please join in

Hello Lynn,

Just opened the Sunday paper , 'Quads quized about cream cake fight.' It sounds deadful , in that lovely hotel where you go for cream teas. So sorry that you and your hisband have now  been banned. They can be naughty , the little darlings. Send them back to Chocolates when you are ready. 

 

Belinda I think I looked quite hot in the hot pants, but I agree the boob tube may have been a mistake !

 

 

Dear everyone, wishing you all a good week , take care Marie xxxx

Highlighted
Member

Re: Bone mets - please join in

Oh dear Helen, are you sure it was the meds and not Bear trying to carry you off to his island to drink the unmentionable? Hope the Mac nurse can get some more help with trying some different or tweaking the current pain meds. Must agree with Chocs the Onc sounds a chocolate teapot in the pro active dept. xxxx
Highlighted
Member

Re: Bone mets - please join in

Morning ladies, oh Helen what is going on? It just sounds dreadful. I need my angry eyes out now - please consider changing oncs. You need a proactive one who will fight your corner and get things done. It's getting ridiculous. I hope you make the eye hospital today - you're taking this zombie look a bit too far. I hope the pain has eased now and this morning you are feeling a bit better. But please consider changing onc. I feel that would make a huge difference. Now rest up and hopefully pain will be subsiding and you'll have a better weekend.

Lynn - I think things have changed - the quads are with you for a week. Enjoy!!!

Wet and miserable here - so attacking the house it is and getting all the chores done. Hope everyone manages a decent weekend. Steris, Bev, Sheila thinking of you all

Huge hugs,
Hxxx
Highlighted
Member

Re: Bone mets - please join in

Good morning lovely ladies,hope we are all okay(ish)

Thanks Belinda,I'll have a talk with the Macmillan nurse when she comes. Yes,it is getting the balance right. I felt totally lucy in the sky ..... Yesterday. Which is great pain under control ,but at the same time I'm asking hubby to get something out the water as its fallen out of my boat !! So yes,tweeting is needed.xxxxxxx

Bev,Sheila,PLEASE try to let us all know how your doing. We are all worried about you both xxxxxxx

Chris,always in our thoughts and we all send our love xxxxxxxx

Marie,now this is getting out of hand. You must take responsibillity for your quads.
They are calling chocolate and LD mummy! And I bet the same will happen with Lynn.
Have you thought about them starting nursery .all the other children will have cute lunch boxes and can sing cute nursery rhymes. The quads will come with flagons of ale in their lunch boxes and will be singing extremely rude sea shanties.

I agree with Belinda ,what were you thinking with that outfit,tut tut.
And please tell Ross he must not take his horse to the Ritz as this is very much frowned upon !!
Poor Ben Cumberbatch landed in a little gift Ross' horse had left after photo bombing!

Catch up later. Huge hugs, Helen xxxxxxxx