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Bone mets - please join in

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Re: Bone mets - please join in

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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Re: Bone mets - please join in

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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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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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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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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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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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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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🐧🐧
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Hi B, so glad you didn't break anything when you had a fall and your okay, I also live in fear of falling and breaking one of those bones of mine! I remember a few years ago whilst in the canaries I passed out in the heat and the first thing that was on my mind when I came round was omg I've surely broken something but like you I was still perfectly in tact apart from a bloody chin!
Hugs Janette xx
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Ha ha moijan but noticed my purple sparkly killer heels were missing ..bet Bonariesis was prancing around the village in them !! Hence the fall ..
Carolyn xx
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Ladies...

I am absolutely with you...live in fear of a fractured femur( broke my wrist xmas 2015)

 

Just as a cheerful aside...have any of you ever had dizzyness when bending down or looking up?

 

that happened to me on Tuesday, bent down/ forward to look at a small chip in the paint of my recently bought new(er) car...stood up and if it wasnt for grabbing my wing mirror...would have fallen flat on my back!  Had a mddle ear infection about 5 years ago and ever since have had to be careful not to turn my head sharply!

 

anyway..I managed to drive home feelng absolutly fine and later realised it may be due to another( oh joy) blasted wee infection! Looked it up...can cause that...so am hoping the keflex will cure the b*****r.

 

am glad you are ok tho Bon. Were you wearing some cast off killer heels from Carolyn?

 

love, Moijanxx

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Sorry Nicky ..I didn't c the film but yep wedges do fit the bill !! I haven't gone into special footwear quite yet but wear fit flops in summer and ugg type boots in winter ..in my world ....sensible !!
Carolyn xxxx
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Oh crikey, Bonariensis! I bet that was a fright! I live in fear of falling over since diagnosed with bone mets, and having compression fractures in 2015. I am so glad you are OK, but please take things easy for a while - shock, etc, can come out later.

 

Hugs. Barton.x

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I hope the bruising isn't too bad but no broken bones so that's a good thing.

I know what you mean about the sensible shoes Carolyn. Did you watch the Ab Fab movie? There was a scene where Eddie's mother, June Whitfield, was with her (elderly) chums and Eddie and Patsy commented on them all wearing wedges! The most comfortable strappy things invented for sore feet! However I'm about 30 years younger than June Whitfield so that's not so good. 👠

Nicky x

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Hello B
I'm so glad that u r ok and that the only thing that got damaged was your ego ...it's so embarrassing isn't it ?
Before I got this bone cancer lark ..I used to wear killer heels all the time but now wear as my mum would have said sensible rubber soles !!
Hopefully make up will cover your bruises and u will be ok today.
Carolyn xxxx
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Denosumab has turned me into the iron lady. Yesterday I was out putting up posters for the village panto when I fell over (or as it's called when you reach my age, 'Had a Fall'). As my chin hit the tarmac I thought 'Goodbye denosumab' but no, everything seems to be OK apart from bruises and scrapes. There may be a few questions today about the state of my face. The panto is called 'Beans' and is on the 27th and 28th at Blackawton Village Hall.

Love to all particularly those waiting for results. B xxx

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Hi mavis like you ive been watching trying to pluck up the courage to write something. Ive had bone mets since i was diognosed in 2014. What did you want to know. Take reassurance that there are a lot if drugs out there to keep this disease at a slow pace. Its nice to know others out there understand how your feeling. Keep positive and strong mavis. This looks to be a very nice group of ladies. Sue
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FF, brilliant news.

I do try to follow this tghread regularly but its sometimes so bsy i lose track so apologies to anyone i could have responded to and havent. Best wishes to all, especially those witing for scans/results. x

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Hello FF
I did wander about posting marirose passing here on this thread but she was so well loved I wanted to get to as many regulars as possible as its a busy place with lots of readers .
Anyway ..marirose would be wanting us to pull on our big girl pants and carry on with life etc.
Carolyn xxxxx
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Thanks ladies! It was very hard to post about being happy, when we are all so upset over Marirose! I decided she would want me to be happy and post. We carry their torches with us!

 

Nicky, I don't know about you but I hate having to adjust and find the new normal! Why can't we just be normal!Smiley Tongue Whatever normal is!

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Hello there!
I already posted it elsewhere, but I also had immunotherapy at Hallwang, now more than two years ago. I had breast cancer and i am Male. That is very rare but just as bad. I have been in complete renission for 2 years now, so I can only speak highly about their treatments, they are indivual and unique for every patient.They performed a tumor-associated antigen test and Next Generation Sequencing on my tumor tissue in order to find the best targeted treatment for me, as these tests show genetic modifications or expression of certain surface markers found on cells. So, in your case a totally different expression pattern could show up, which means there is a different medication or vaccine for you. That is what I like about their approach-it is not one drug for all, but really individual-based. 

I also Love that they Know what they do and keep up with research. The doctors there have a profound research background and knows their stuff. I have been to clinics that offer you some Kind of vaccine or so-called immunotherapy without understanding the rationale behind it. I also recommend getting Information from Hallwang Facebook site, they are actually the only clinic i Know that posts real scientific data from ongoing trials and not some opinions or weird data of unkown origin.

So I can only recommend the clinic to you!

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Hello Nicky, sorry to hear you are so tired on Kadcyla - I hope you can "get used to it" like you did on Cape. I know nothing to do with chemo is easy, but, as long as we don't have severe se's, we all tend to accept the little things as the new normal - I hope it gets to that stage for you but is still effective.

 

Good luck to all who are having tests, results, se's, and just generally struggling with things.

 

Hugs to all. Barton.x

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Wow, ff, that is excellent news! One less thing for you to worry about. Brilliant!

 

Hugs. Barton.x

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Just wanted to say "so happy for you FF!" Free treatment for a year must be such a relief, long may it continue to be effective for you.

Nicky, I'm thinking about you and everyone having new scans and treatments, wishing you strength and positivity.

Carolyn, it's so hard when a good friend on here passes away, it makes me feel sad and I'm not a regular poster like you. I'm in awe of all the community champions giving so much of their emotional strength to supporting people on the forum, it can't be easy and you do a fantastic job xxx

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Hello ladies
Well first of all FF ..what wonderful news for you but gosh what stress it caused you.
Nicky ..I hope you are feeling better too with kadcyla ...probably settle down with time when your body adjusts ...you know you had years of h and p in the system and then a new one so your body is confused!!
I'm afraid I got very upset over loosing marirose ..she had always been there and replying to us ..but went hospital yesterday for bone juice, lots of waiting around and chatting to other ladies who were really strong and positive with their dx .so I have given myself a kick up the rear end and back to real world again.
Met my new oncologist who looks about 12 but suppose we all think like that as we get older !!
Carolyn xx