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Bone mets - please join in

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Re: Bone mets - please join in

Hi sweet ladies, hope all of you are fine. Just popped in to say hello before I start work. Me have finished Chemo(for the time being) and now on Tamoxifen. Have never had my period since I started it almost 2 months ago. First scan showed some improvement so I guess that they rely on these little white pills now to make it improve more....

Life is beautiful, meanwhile, when you do not have to go that often to hospital.Smiley Happy Although to be honest I feel much more tired now than when I was on chemo, perhaps due to the few kilos I put on around Christmas Holidayds.Kisses to all and have a great day.

 

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Re: Bone mets - please join in

Hello stress Head
Oops ..your homeopath would probably keel over with a heart attack or something if he had me as a patient !!
I did all the healthy stuff from the Jane plant book at primary stage back in 2004 ..wouldnt even drink tap water etc etc but now im laid back about it all as i have a sell by date now !
But to be honest ..I have 2pm choc but do eat fruit and veggy as well but not the amount your homeopath says ....sounds loads and I would be "purping" all day !!
Carolyn xxx
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Re: Bone mets - please join in

In fits Carolyn with the image of you in your crocs on your trike weighed down with chocolate....hilarious. I went to the homeopath yesterday and we got onto diet...should be eating fruit by the bucketful and 10 veg a day as well as supplemets...no mention of chocolate thogh i'm sure wholenut must count. Has anyone ever proved that chocoalte is bad for your immune system??? seriously though, if you mean it, go ahead and get one. Ive even thought of an electric bike but if the trikes are that much god knows what an electric one would be!!! think i'll have a freddo bar while i think about it!!! x

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It all started well today but then I realised my stash of twirls was a five pack and not a four pack so I'm as high as a kite on chocolate.
Promise ..no more mischief from me today .ha ha.
Carolyn 🍫🍫
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Oh good grief! Now what have I started? Nooooooooo!!! Although the cheese scone is agreeable!

 

Hugs. Barton.x

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Hiya Barton
If I hire a bike ..then you should as well ..then after we have had our cheese scone and coffee we can go for a cycle ride !! Ha ha .
Standard outfit will be lots of Lycra, crocs and a baseball hat !!!! Think the little men in white coats would be called !!
Carolyn xxxxx
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Hello Carolyn, if you are seriously thinking cycling might help you, but don't want the expense of buying something in case you can't do it,  why don't you hire something from the place down near the Quay (Saddles & Paddles?) for an hour? Or am I just being gullible again? Are you having me on? If not, good for you! You're a braver man than I am, Gunga Din!

 

Hugs. Barton.x

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And your little dog Toto too!! Carolyn years ago our neighbor got a DUI and drivers license is taken for a year. Her husband was so pi$$ed off he would not drive her anywhere or take over her chores like grocery shopping. She bought one if those bicycles with a motor. She rode it with her basket to the grocery store. They had a mailbox at the post office  instead of home delivery. She would ride it there too. Well, one day I saw her and she was hunched over and pedaling (not using motor) hair flying, she looked like the witch from Wizard of Oz. A couple days later my other neighbor called me and told me she saw her and h w she looked like that witch. We were giggling over it for days bc w e both thought the same thing. My husband told us we were both mean. He said at least she is trying to handle her mistake. Well, the next day he came in the house laughing with tears. He said he just saw the neighbor and coukdn't help himself, that we were right she looked like the witch!!!

 

My daughter says it's sacrilegious to drive past Dairy Queen (soft ice cream) without stopping!!

 

Croc haters. Crocs are wonderful on your feet, if you have sore feet from capecitabine!

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Lol you and your chocolate.i dont really like chocolate but im eating bags of mint creams or sour jelly sweets. I feast at night on them. Can only buy thwm at hospital so i clear thier shelfs out. Lol xxxx
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Sue ...Just looking at them on e bay ..quite pricey at £350 if I'm not going to be serious at using it!! But u do get a little shopping basket with it so i could fill it up with chocolate when I went shopping and a little bell too !!
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Go for it carolyn. Ive just started walking and its made a difference to me so it cant hurt. Some people do yoga. Got such a funny vision of you on the bike wearing your crocs. Lol. Xx
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Hello.
Has anyone here with hip, pelvis and femur bone Mets been told whether they can cycle ?...now don't laugh but someone went past my house riding a trendy three wheeled one and I thought might be a good little exercise plan for me.
Hubby says I will look like a telly tubby or someone from noddy and he will disown me but I'm thinking healthy living ...especially with crocs on as well !!!
Ha ha xxx
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Lol sorry girls. You croc wearers are so funny. My friend loves hers. She sends me photos when shes out shopping to wind me up. I just dont like them but i realise im a minority lol. Xxx
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Well done Bon ( sorry about the name but when I type in the full name ..predictive spelling does all kind of adjustment to your name !!)
Hip hooray for keeping the " crocs" club alive and kicking ..keep wearing them with pride .
Well it's dull and cold here but lucky no ice or frost so will venture out later ..oh dear will have to pass McDonalds ..it would be rude not to stop and get a little treat !!!!
Happy days everyone 👠👠
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Hi Sue...yes, apparently this can happen, according to this previous thread, I'll bump the thread up for you as there was some discussion around precisely the symptoms you are describing might find it useful xx

 

Moijan💚💚💚

 


https://forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/zometa-reactions/m-p/302346/hi...

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Re: Bone mets - please join in

I love my crocs; I wear them all day. Each to his own i suppose B xx
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I think we should have a burn the crocs party. I hate the things lol .my friend from scotland sends me croc pictures to wind me up. Why would anyone want to plod around in holey half wellies. Burn the crocks moijan and carolyn. You can keep the chockies .lol xx
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Has anyone neen taken off the infusion zometa due to calcium problems. My last infusion was 20 dec. It always gives me flu like symptoms which usually puts me off my feet for a few days but tjis one knocked me out im due again this week but have been put on hold as ive been so unwell with fatigue, headaches and a numb bottom jaw and teeth. Ive been booked in to see the max fax specialist and a head mri so i will know in a couple of weeks whats going on. I just wondered if anyone has had or heard of this??? Its very painful around the rest of my mouth and im really worried. Cant sleep at night which is unusual for me. Sue xxx
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Hi lovely Carolyn,

 

sorry about that...im onto those little chocs in a see thru box, wrapped in gold paper now.....they were all in my stocking...

 

caffiene in tea, coffee, chokky, anything...apparently can irtitate the bladder...im only aware of it becouse of my  habit of collecting urine infections! This chemo is making me more prone...when n cape it was cellulitis and a dvt, now its wee infections!

 

its a hard life isnt it?  Oh, and apparently fizzy and decaf drinks all do the same, but if you arent collecting wee infections...prob you wont find it a problem!

 

moijan😖💚💚💚

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Re: Bone mets - please join in

Hi Ladies
Thanks for the great welcome..I am quite overwhelmed by your attention!
It is so comforting to talk to people in the same predicament. I feel much better already and have relayed your kind words to my wife. I suspect she is bemused about me chatting to ladies online!! She is very stoic about her condition and if asked about it she says her main concern is the pain in her legs and lower back caused by sciatica. She wishes she could walk better without pain.
I think I'm more worried about her cancer than she is! Recent good news is that her very swollen feet have gone back down to their normal size.
Anyway "it's good to talk" as someone once said and a worry shared is a worry halved.
Thanks again everyone, I'm just off to get me some Crocs!
X
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Hahaha yes now I also know why I'm always on the loo!.....don't care i ain't giving up chocolate! 😤😤
Hugs J xxx
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Re: Bone mets - please join in

Moijan
Why have u started talking chocolate ..I was secretly having a choc free day and now it's your fault have found a four pack of twirls I was keeping as a secret stash and of course I will only eat one ...pigs will fly .
But seriously ...I didn't know that caffeine in chocolate could affect the bladder ......no wonder I'm in and out the loo all night even if I don't drink anything in the evening !!
Carolyn xxx
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Re: Bone mets - please join in

Hi Carolyn, what makes you think I was referring obliquely to you , haha.

 

now, its official...Carolyn always carefully reads up on posts before inputtingxx

 

actually I love kitkats, but was telling Barton that I cant have too much chokky as caffiene irritates my bladder!

 

so im stuck with a bounty or. Turkish delight, but we whouldnt be feeiding our bc with sugar, should we??

 

in the chemo suite there are always little bowls of sweeties....and I sometimes succumb, but usually I manage to avoid them. I also get a free sandwich there now and tea and biscuits...feel so well. cossetted, comfy lie back chairs,  could be a spa cafe, if it wasnt for the plug ins?

 

xx

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Re: Bone mets - please join in

Hello FF
Well bet you have been up to some shenanigans with hubby away ..u naughty girl!!!
I'm going to loose my street cred here now but confess to owing lime green and blue crocs many years ago ...and then I got the flip flop ones in .......tango orange !! But I have never owned anything so comfy since.

I hope u get your ibrance soon as it does what it says on the tin for you and if it works then it's worth fighting tooth and nail for.
Well you had better get your pinny on ( apron) and a full welcome meal ready for hubby and show him you are a stepford wife in his absence!! Ha ha .
Hugs xxxx
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Re: Bone mets - please join in

Hi Gang! Welcome Chris! Chris some doctors try to make an educated guess on time others will not commit themselves to a guess. Mine told me it's not an immediate death sentence but he thought I had two years. It's 11 years now!

 

Carolyn my bones crack and creak worse than my peeps at the senior center where I work. I wish you could see them exercise! I could never keep up! I walk slower than most of them. Btw Friday was a great day at work. It was PJ day. I wore my PJ's with a cardigan sweater for a robe and comfy slippers. Hubby went away for the  weekend so I came home and stayed in them. I had a pair of fuchsia Mary Jane crocs. Seriously, they were so light and comfy! I wasn't allowed to wear sandals when I drove school bus. My feet needed to breathe. I would where them to the creek with my dog too. Could walk in and out of the water. My feet swell in the summer and they worked well with that too. They make flip flop types too. I was thinking of trying a pair. 

 

Waiting to hear from Pfizer for delivery of my ibrance. I was supposed to start my next cycle tomorrow. I have 3 extra pills, I could start with them if Pfizer can guarantee shipment by Thursday. 

 

Hubby won't be home from his weekend excursion til later today, so I'm off to see what trouble I can get into. FF

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Re: Bone mets - please join in

Hiya ( can't say ladies anymore )as we now have chris join us and very welcone too.
Firstly moijan ...gone off kitkats now ..it's more likely to be a Terrys choc orange but I've eaten my body weight of those so will move on to something else!!
I sooo miss strictly on Saturday night tv ..its real rubbish tv now and the only night I get the remotes to myself too !!
Hiya Bon. ..you say that 70 is the new 50 ...well in my world ..64 is the new 84 !! Phew my bones creak and ache in the cold weather and I've just had bone juice this week . Hope u are feeling better after your fall ..sometimes it takes a few days for the damage to appear ...I can trip over a feather .
So sorry Jeanette you arnt joining the croc club ..can we tempt you with a pretty white pair maybe ?? ha ha ...
Well that's about it ..do nice that this thread is a bit busier again.
Xxxx
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Re: Bone mets - please join in

Hallo Chris

I'm 70 too. They say 70 is the new 50 but i struggle to believe that now. I am on exemestane and denosumab and stable so far. My onc told me that the exemestane would only work for about 18 months but having read here that doctors' predictions are notoriously unreliable I remain optimistic till told otherwise. When it does stop working I have not decided what i shall do. Your wife is so fortunate to have such good support from you. B xx

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Re: Bone mets - please join in

Hi Chris, welcome to the forum, sorry you have had to join us  (on behalf of your wife) we are a friendly bunch and are always on hand to offer help /advice and support......oh and we are a bit of a crazy crowd from time to time, especially the lovely Carolyn (I know you won't mind me saying that Carolyn ) 😁

I am the same treatment plan as your wife, and also be treated at The Christie hospital, different oncologist though as mine is female, she also doesn't say much, I think as long as we are stable they are quite happy with that. I asked her once about "healing mets" and "NED" (no evidence of disease) she said they don't like to use those terms at the Christie and are happy with stable results. 

 

Morning Carolyn, no I have to hold my hand up and say I've never had a pair of crocs! I'm still rebelling and wearing heels, only at the weekend though  (not really high ones ) 

Well a wet and miserable day here in Manchester today so lazy day eating chocolate and watching the TV for me! 

Hugs J xxxx

 

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Re: Bone mets - please join in

Hi Chris,

 

Welcome, and love and best wishes to your wife. Its always a shock to get a bc diagnosis isnt it?

and its so scary...especially if a doctor makes a similar prediction to the one you were given.

 

when I was initially diagnosed in 2001 with a large tumour in my breast and 12/13 lymph

nodes...some of which had leaked into the armpit tissue...I was told it would

likely 'be back within two years' 

 

well, it did come back - about three years ago!  Like many other ladies, I have bone mets,

also liver mets and currently these are well under control.

 

Most of us have ups and downs, either in our cancer spread or emotionally or both....

But this forum is a lovely welcoming place where we all share support,

so that really helps xx

 

Doctors have to tell it like it is...but sometimes I wish they wouldnt make

' survival predictions', because actually no one knows! And of course

if a 'Doctor' makes a prediction it sounds like gospel and we often believe it.

 

Like  many others, I am on chemotherapy and am so blessed that it has shamed the

cancer into a corner and I'm leading a fairly normal life around the hospital visits xx

 

Please come back and join in, let us know how things go, we are all here

for each other X

 

Hugs,

 

Moijan 💚💚💚

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Re: Bone mets - please join in

Hi Julie D,

 

thank you...im fine xx

 

how are you? I had felt the forum itself was a bit quiet....but assumed the ladies were hibernating in the cold weather, maybe with a blanket and a hot toddy. Xxx ( or some may take a pile of kitkats with them!)

Moijanxx

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Re: Bone mets - please join in

Hiya Chris
So glad your wife is stable and coping well ..everyone is unique with progression of bone Mets and so it's like asking " how long is a piece of string" .
I take a day at a time ..try to do something everyday as a focus away from it all.
You sound very caring and "brave"to post here on your wife's behalf and hopefully you will enjoy many years to come together.
Carolyn xxx
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Hi Chris,

 

I;m glad your wife is doing well on treatment and hope this continues for a long while. I  have had bone mets since 2010 and am on very similar treatment to your wife (i have Zomeata rather than Denosumab but Denosumab is the newer more up to date treatment) so yes, these treatments can work well for us. x

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Hi Carolyn and JulieD thanks for the welcome.
We were surprised but secretly glad that we were not put on chemo or radiotherapy two years ago. Almost wondered if it was because of my wife being 70. Anyway I think she would have declined as she is also being treated for depression and wouldn't cope.
She had surgery and Christies put her on Letrazole and Denosumab.
The bone lesions are stable so far so we count our blessings!
Whilst our onc is very nice he says very little to us on our three monthly visits. I suppose there's nothing to say as there seems to be no deteriation.
We were told originally that she would have about three years so it's nice to hear of people living much longer with similar treatment.
Thanks again for your great forum.
Chris.
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Apparently I was confused Carolyn! Brain is useless some days! 

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Hi Ladybird,

 

We haven't haf a man on the threads regularly since Wayne several years back, who like you, was finding info for his wife. Welcome! There are also sections here for relatives and friends and the phone line can be used by you too so if you want any support for yourself (it is hard for partners, we know) then do please use the support here.

 

Carolyne I  still wear Crocs Woman Very Happy  but boring black ones at the mo, so handy just to slip them on when popping into the garden or onto the balcony, so light. I wear flat shoes when I  go out, but have never really been a heels lady, wore those 4 inch wedges when I was a teen though!

 

I'm so glad you both managed to get to Ellies celebration and that it was such a lovely fitting tribute to her.

 

Moijan, good to see you posting, you've been a little quiet lately and was about to PM  you to see how you are doing.

 

Have a good weekend all xx

 

 

 

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Hello moijan
Yes we met Ellie often as we all live within spitting distance of each other here.
If I lived nearer to marirose would like to attend her funeral too but its not possible to travel that far.
Xxxxx
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Well done Carolyn and Barton,

 

Ellie was a lovely lady, tho we never met. Glad you could go, as you met her regularly didnt you?

Moijanxx

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FF
I think you have got a bit confused ..it was Ellies celebration of life we went to ..not a funeral !! Ha ha
Carolyn xxx

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Carolyn and Barton, I'm glad you both could attend Marirose's funeral. She was too young! FF

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Hiya ladybird
Hello and welcome ..we are always pleased for everyone joining us. There is some lovely threads to be read here for information and support ..excuse anything from me though as I'm as much help as a chocolate teapot for sensible advice ....I drive everyone mad with my rubbish but there is so many kind helpful ladies that can answer any queries you might like to ask
Carolyn xxx
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Reading the posts on here has been very informative..my wife doesn't do forums but I can share the information with her.
Hope this is ok.
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Hello everyone!
My wife was diagnosed with bone bc about two years ago.
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Hiya Jeanette

No comments though from you about the crocs !! Maybe all wear pink ones with stripey snoopy socks or something !!!
Ha ha ...
Carolyn xxx
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Aww that's lovely Carolyn, glad you could be there on behalf of "met ladies" to pay respects.
Hugs J xx
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I think we all should rejoin the " crocs club" again with our footwear ..for those that don't know what they were ..they were coloured rubber clogs that my hubby always said looked like lumps of Lego on my feet but oh boy were they safe and comfy !!!
Carolyn xxx
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Well ladies ..Barton and I have just been to a celebration of Ellies (EJ81) life at a local hotel.
What a beautiful tribute of poems and words from friends and family to a 35 year old that packed more into a short life than most of us could ever have done.
RIP Ellie.
Carolyn and Barton xxxx
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Hahaha yes Carolyn, I know the penguin walk very well! 🐧🐧
Hugs J xxx
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Sensible flat shoes here! Anything with even a small heel puts too much pressure on my already screaming knees! I even had to get Mary Janes bc my toes don't want to work right to hold other shoes on. I want my clogs back!! 

Falling is scarey! I always feel I'm going to be broken or split somethin open and need stitches! Thankful you are OK, Bonariensis! FF

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Hiya Jeanette
All of us bone metsers do the constipated penguin walk thing on wet pavements don't we and ice and snow is a definite no no.
Xxxx🐧🐧