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Bone mets - please join in

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Re: Bone mets - please join in

Good Morning Ladies.

I haven't been on the forum for a little while as actually wanted to try and put this 'condition' out of my head as much as possible.  Guess most people could call it denial but as its been summer holiday time I really didn't want it taking up precious time.  I think when the sun is shining all seems so much better but now the sunshine seems to have disappeared I can feel my mood slipping somewhat.  I have been on my hormone treatment now for nearly four months - Tamoxifen, Zoladex and Ibandronic Acid (for bone secondaries).  Hoping that they are doing the job.  At first review in August got told all was stable.  Was secretly hoping that I might get told that it might be regressing but stable is good isn't it?  Back in November for another scan and review.  Anyway I think I just felt like I needed a little ramble this morning.  Hoping everyone is doing OK and sending positive vibes out to all.  I think I may go off to garden centre this morning to get a few bits.  Debbie xx

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Re: Bone mets - please join in

Crikey Sharon, here's to a restful week after all you've been through. So glad you have escaped the 'hotel'

 

sending cyber huggles your way

Helen xx

Community Champion

Re: Bone mets - please join in

Sharon, Home sweet home! That's wonderful! You have been having a rough time. Hoping for some easy times for you! FF

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Re: Bone mets - please join in

Dear Sharon 

so pleased you have been able to get home now you can relax with the comforts of home. You really have had a lot to put up with and I wish you a speedy recovery

Much love and (((hugs)))  xxx

Community Champion

Re: Bone mets - please join in

Glad you are home, rest and take things easy, listen to your body and sleep when you need. xx

 

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Got home at eight tonite .still feel ropey but not surprising after all that.still can't eat much but would rather be home .take care all Sharon.😻
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Sharon, Glad you were able to proceed with your treatment! As bad as we all would like to have a break from all this, we know we don't want to miss many treatments. You did good getting through it! Now, to get yi h an escape plan! FF

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Re: Bone mets - please join in

So pleased to hearthe bloods are ok Sharon and that you had the Eribuln...well. Done! Hopefully you can. Get home to orrow.

 

everything is crossedxxx

Moijanxx

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Re: Bone mets - please join in

Hi Sharon so sorry to hear you are in hospital at the moment. Hopefully they will get the sickness sorted. Sending huge hugs. Linda

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Hi sharon, glad to see you are still 'upbeat' despite all you are having to endure at the moment. Lets hope you get the sickness nder control and get home fast. Lots of love.xxx

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Re: Bone mets - please join in

Sharon
Good to hear from you ..phew I'm feeling guilty moaning about a few aches from the bone juice this week when you have had the full works !! I salute your strength of coping with it all ( not patronizing you though) but hopefully you will b able to go home later to your own comfy bed and family.
Sending you every hug possible xxxxx❤❤❤
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For good. Measure..ibhad the coldcap on the drain still in.the chemo ..then the demusamab..then that tummy jab you have in hosp for blood clotting...i felt like pin cushion...,but if I can sort out this sick thing.hopefully home tomorrow.xxsharonx
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Hi everyone.bloods were fine.so
the chemo went ahead but not till about half five do I'm now wide awake on steroids...and had sickness today...not the chemo fault as it happened before....they gave me a sickness injection seems to have helped...update later.xthanks for all your support ladies.❤😻 xsharon
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Hi Sharon

 

hope your chemo went well. Love and hugs to you

 

Moijan😎❤️🎼🎹🛁

Community Champion

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Sharon, I was away for 2 days, just saw you booked one of those vacations nobody wants!! Hope you feel better now that your drained. I haven't  had to do any drainage, but it doesn't sound fun! Hoping this chemo kicks in and gets ridof the problem.FF

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Hello Sharon ..
How are u feeling today ? Hopefully home from hospital with a nice flat tummy too !
Hope chemo went ok too.
Hugs xxx☺☺☺
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Yes Helen, hope yours went ok...how are you ferling?

 

Moijanxx

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Re: Bone mets - please join in

Hi Sharon, 

 

tough day then ....so sorry. Hopefully tomorrow will be better. Good you are having the Erib. 

 

 

I was feeling fine today and this evening..I think it might be partly because ive been pushing the fluids even more than usual.  I know it flushes stuff out quicker but the effects stay around.

 

have a good nights sleep tonight Sharon if poss and let us know how the infusion goesxxx

love, Moijanxx

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Hope yours went well today.xsharon
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Re: Bone mets - please join in

Hi moijan had drain today so bit
Rough.chemo will be given to me on the ward tomorrow.xsharon
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Hi Sharon, sorry, my ipad is playing up and kept throwing me out!

 

nice to hear they are looking after you..yes, they may well. Be worried about having given you inaccurate info. Am sure they are sorry. However, what a shock for you...and its amazing they did give you that stuff...was it someone elses stuff..by mistake? Or had they mis read the report? Goodness...we all make mistakes, but that one you didnt needxx

 

The rescus thingy that spooked you...it could be hospital policy I guess, but you could feed back how it made you feel( but prob not worth doing)

 

you are doing really well Sharon and one brave lady. As I said, you have bern there before( being drained) and so you know what to expect.

 

re tumour markers, yes I know they go up and down, im currently happy, but we all know these things can change...

 

hope you get the Eribulin tomorrow as planned, maybe you will feel a bit better soon...hopefullyxx

i have a good feeling about this drug...its not a cure, but it has given people a lot of. Mileage.

 

am off for my dose today, please keep your fingers, toes, legs and eyes crossed for me and. My veins!

 

when you feel heaps better, may travel to Southend to build a sandcastle and hope you are about, And feel up to giving me a hand

 

love, Moijanxx💜💙💚💗💛❤️💖😎

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Re: Bone mets - please join in

Moijan enjoy your good time
Xx
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Also when I had capecitabine my markers went right down and I was ned with sclerotic scars..and I felt great...unfortunately it came back hopefully this erubulin will help.xxsharon.xx
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Re: Bone mets - please join in

Moijan your doing really well.im just sitting around in my room.i wonder if I got my own room coz they sent me report saying I had lung Mets when I havnt its quite a big mistake it stressed me all last weekend...yes we have two specialised oncology wards at this hospital...so its good care usually.x.and the chemo unit is quite new very modern bright with own garden
.etc...still rather not be here
.❤ ..havnt heard anymore from Drs yet will update later .x😻 x
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Thank you Stresshead, im under no illusions, we are all going on the same train! However, mine have come down drastically in two months.....which feels pretty amazing. When i looked back they are better thn they been  for 16 months. So im quite pleased. I guess the next mri will be the telling!

 

i am glad you are doing well too, take some joy in the results! It isnt always like this.

 

love Moijanxx

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Janette, a little late but was so pleased to hear your fantastic news. Enjoy your holiday!! xx

Sharon, sorry to hear you are back in hospital, its horrible isnt it. Still at leasts it sounds like it will be a quicker visit this time. Hope you are soon sorted and home again.

Moijan..glad to hear your markers are still going down. I now always ask my onc and like you, for the last 4 or 5 times they have been decreasing. However, he did say to me today not to read too much into them. He has told me that over the course of the disease they can go up and down for loads of reasons. Just i thought i was getting some good vibes, i have them dashed again. I know they are not definitive and sound indicators but  it was nice to think that something good was happening when they dropped...i think he was just trying to say dont get disheartened or anxious when they go up but i still felt like he'd rained on my parade.I dont mean to do the same to you but wouldnt want you to get despondent if they do start to go up, although i know if you are anything like me, i will anyway!! xx

On the denosumab front..i think i heard , read or was told that it is newer than zometa but more expensive so may explain why not everyone has it. I had mine six weekly from the start to fit in with my chemo cycle and until its found that my bones are worse i dont suppose they'll cahnge it. As a few of you have said, you seem to be getting side efects with a four wekly regime so perhaps six is the optimum. Will be interesting to see if the side effects reduce.

Best wishes to all. xx

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Hiya Helen
Yes meet ups will b nice but it's going to be quite a job as we all live all over the place !!
We have bought cyclamens at the gardening centre and they look lovely and hopefully will stay colourful all winter.
Carolyn xc
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Re: Bone mets - please join in

Hello Sharon.
So sorry that u r back in prison ! But u will feel better once you have been drained again.
Keep posting and let us know how you are.
Hugs xxxxc
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Re: Bone mets - please join in

Hi everyone in back in hospital again.stomach swelled up..actually came to see oncologist specialist who was lovely about the scan reports that I have lung Mets....but stomach over last few days swelled up so she's kept me in for a drain probably tomorrow...the lung Mets turned out to be a typing error😈....not the sort of thing I need to be having at moment
.anyway I was straight on ward didn't have to mess with a&e...l
Update you all tomorrow.xx😻
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Re: Bone mets - please join in

MEET UP??

 

Some of us have been mentioning meeting up on another thread and we seem to (sadly) be a big community on here at the moment. 

 

I'm going to post on the meet ups thread - under living with secondary breast cancer - and see if we can get something/ things organised for anyone who wants to join... Hoping I won't be billy-no-mates sitting in a cafe on my own somewhere 😂 So please check it out if interested!

Helen xxx

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That sounds nice Carolyn.. Both Bude and the shopping! 

My hubby's been away working for 14 days (Poland) and is back at last tonight...hoorah! 

Maybe that's why I've been down as he's a funny lovely man and keeps me and the kids highly entertained 🙂

 

Went to garden centre today and bought some lovely winter flowers..violas.. Gonna pot them up tomorow and try and post on the gardening thread :-))))))))

 

helen - hugs to all xxxx

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Your very welcome although I live in the heart of Exeter so no geese but I'm staying in bude at my sister's . She lives virtually on the beach ..Sat on the balcony now ..cuppa tea and watching the geese ..just been to Atlantic village and exercised the credit card and had a McDonalds so all very nice.
Carolyn xxx
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Oh and Carolyn, if i come down to Devon can I bring my washing?

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Yes Carolyn, chocolate rattles!

 

did post this on the erib board, but my tumour markers just keeeeep on going doooown!

and im feel much happier, said to my lovely, really nice, patient and kind onc, that id been depressed and he said, well theres so much going on anyway for you. You cant be certain its the drug..guess hes right.

 

Carolyn, how can I get my partner to bring me down to Cornwall...id love to go down there,he doesnt lkie holidays and its such a long drive.

 

Moijanx

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I have been reading yr eribulin journey and its nice you all can touch base on the side effects between yourselves.
It certainly good support and sorry that you have all got the downer of bad moods though ..obviously a common se.
So helen, Sharon and Moijan throw a few rattles out your prams ..it's allowed.ha ha
Carolyn xxx
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Hello moijan.
We are in bude Cornwall for a few days and managed to avoid the floods but it was hot at night.
Sat on balcony overlooking coast and loads of geese flying around as there is a nature reserve nearby ..bit different for us as we are townies !!
No choc yet but it will b involved later.
Carolyn xxx
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Hello shanwoild
I'm the biggest moaner of denosumab ! I was ok for the first six and then I got bone pain ..it was lasting two weeks out of four and i put it down to that. Im spreading them six weekly now so will see if its better. The jury seems to b out on some US websites whether three monthly is now the better option. Apparently the first six do most of the hard work on our bones !!
Carolyn xx
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Hi ladies hope you all survived yesterdays very high temps?  Hope the eribulin people are all doing well and that the xgeva people arent getting much  bone pain! Im back on Zometa and fibd it suits me really well.

 

have a lovely day.

 

carolyn ...today feels like a chocolate day, doesnt it?

 

Moijanxx

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Re: Bone mets - please join in

Hi!

 

I just had my 7th one too and experienced bone pain today. Not cool, becaue it reminded me of Taxol. I've had very little side effects from Xgeva, but I'm now wondering if the pain is a build up of the injection. Is it going to get worse? I took Tramadol today.

 

Thanks, Shannon

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Hi Carolyn your a good dog sitter.your sons lucky...we have had nearly constant sun for weeks in Southend Essex..in fact its going to be 32
Degrees tomorrow.bit too hot for me..im sleeping on my own hubby in spare room both get better sleep and cooler.😃 sharonx

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Good morning ladies.
Well up at 5.30am as dogs bladder was more urgent this morning.
House all cleaned ..washing machine churning away and tumbler drier being kept busy as rainning here in Devon.
Hope everyone is ok ..
Hugs xxx
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Hello ladies
Well don't usually see this part of the day as I'm not a early riser but got sons dog and his bladder and stomach wake up with the lark.
Don't think have slept much either as I have been sharing bed with this very large hefty dog ..which farts, snores and licks his man bits !!
Think a nap later for me .
Hope everyone is coping ok ...think its going to b a nice sunny day.
Carolyn xxxx
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Hello avrelia
Well sounds like your treatment plan is working and you have had a nice holiday too. It's surprising how quick its goes and before you know it ...it will b Xmas and all over.
Hope u get yr wig soon as you will more glamorous with it.
Carolyn xxx
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Hi ladies, have not been here for a while, holiday is over, all went fine, trip, a week at the seaside, I needed it badly. Now I have had my third chemo, just before it had an ultrasound, they said that the lump has got increasingly smaller, which is good I guess. Cycle fours is going to be combined with Zometa. And after that I will be having some scans in order for the oncologists to decide how many the cycles will be- 6 or more. They are not talking about masectomy as they say it will not make any difference to a persons life span. May be they are right, althoug getting rid of the bastard inside sounds to me like a good ideaa, but they told me that I will be the one to choose if I wanted the surgery. Everything is going on so quickly to me, being diagnosed with primary and secondary almost at the same time in June, and now is just September, but I am not complaining, people are waiting for their treatment so long in some countries, even in my native one, it is ridiculous.....Still waiting for my wig hopefully I would get it before chemo finishes:)

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Morning ladies, off on my hols today so I'm signing out for a week or so now. Hope your all well, will be having a few cheeky cocktails for you all🍹🍸.

Hey Sharon that would be mad if I was in the same hotel as your sister in law wouldn't it! Hope you all have a lovely day at the wedding. 

Take care hugs Janette xxxxxxx 

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Sharon
Have a nice time at the wedding tomorrow and make sure you don't drink too much champagne and fall of those high heel shoes you are going to hobble around in!!!
Xxxx
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Carolyn the six week thing sounds good to me..less hospital❤
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Hi have a lovely holiday Cyprus is lovely.my sister in law who gets married tomorrow is flying out to paphos on Sunday as well...we also have a huge heatwave coming here what a hot summer we've had This year lovely for all the schoolchildren holidays..xx
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So pleased to hear your news Janette. Have a fabulous holiday xx
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Thanks Carolyn, I haven't even got my suitcase out yet! Been busy doing cleaning etc. Will probably pack later on, we fly at just after lunch tomorrow so no mad rush yet.
Hugs Janette xxx