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Bone mets - please join in

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Re: Bone mets - please join in

hi carolyn

i had to have someone in to decorate for me as could not manage from wheelchair,and didn't tell family until had arranged a decorator ,or they would have said they would do it ,but i get my disability benefit so pay from that ,i had my staircase done and wet room ,ceilings ,walls and 8 doors ,he charged me £ 200 which i was amazed at so having him later in year for kitchen and lounge ,but as you say it's the upheaval for these rooms.

 

dont know what to think about my treatment carolyn ,have had 8 out of 18 sessions but breast gives me pain now ,not a lot but there and dont know if normal or trearment not working,but see onc on friday so shall ask him and also mention my stomach and back which my doc said was the cancer spreading in his opinion,so shall be pleased when this week is over .

take care and thanks for your on line company.

reneexxxxx

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Hello Renee
We also got loads of rain last night but it's fine today.
Long day tomorrow for you but hopefully the treatment is blasting the little invaders !! No haven't chosen carpets yet ..got to get decorated first but somehow not looking forward to upheaval. .maybe later in year!!
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hi carolyn

a happy sunday to you too,we had rain all night long so everywhere soaking ,hoping it stays away now as have my treatment tomorrow then oncologist on friday ,not looking forward to tomorrow as an hours drive each way ,but hey no other choice ,my appointment is 1pm but have to be ready for ambulance by 11 am and usually quite a wait before the actual treatment comes to the ward,

hope you are well and feeling ok ,have you chosen your new carpets yet ??or did you say in the future ,my memory is like a seive at the minute down to old age i suspect haha.

take care of yourself .

Renee

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Hello Moijan ( the Queen of spikey balls now)

Well what is a RA exhibition? Thinking about the spikey balls ..I have 2 like that I use in my tumble drier to stop the washing tangling up. Maybe I will join your spikey ball club now !! Ha ha ...not.

Pmol ..hope u get on the trial as it's the last step before chemo really isn't it?

Hello babsy
I think a lot of us got missed with our bone mets and it was put down to old age before we got scanned. .I was told mine had been there years too so the little blighters were well settled before I got treatment ..
Hello everyone ..happy Sunday and hope u r all enjoying your coffee and croissants this morning.
Hugs xxxx
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Thanks Carolyn! Now on exemastane.  Had an emergency mri as question on stability on my spine; going to speak with spine surgeon as they decided it was not urgent, having radiotherapy and trying to get into palbociclib trial... and been signed off from work for 4 weeks so 'enjoying' the summer holidays 😅🌧🌧 xxxx

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Hi everyone, haven't posted on this forum for a week or so, as I mainly use another forum now. However, I missed all of you lovely ladies so have caught up with the last few pages. Has anyone been to a breast cancer  meeting ? They're having one in Maidstone on Monday, came across it by chance ( pressing wrong button on IPad). 

Ive got extensive mets in my skeleton including my entire spine. I'm fortunate in that I have no problems in my spine. The reason my spread was found is that my GP thought I had Piriformus syndrome. Eighteen months later it was found that I have extensive bone mets. Apparently, the original treatments hadn't worked so I'd been walking round about 8 years, without any real symptoms. 

Funnyface, congratulations to you. I told you there would be a new pathway for you. You will be sorely missed I'm sure. 

Welcome to newbies, you'll find loads of support on here with these gorgeous funny ladies. 

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Thank you.... 

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Now then.....yesterday, after I struggled home(well, hobbled actually)

I Sent an update on my trek to the RA Summer Exhibition....and lost the lot!

 

anyway.....sadly Ramade stood me up!  hadnt got my spiky ball with me, I had to keep 

prodding and kneading My left cheek in order to be able to keep going......goodness knows what the hordes of other people thought!   Anyway, I just knew Carolyn would like some pictures, as it was an exhibition....so here below, we see in first place.....the spiky ball, next ..the RA, and lastly,...the welcome  very very welcome, sight of my bus appearing,  to take me back to Victoria station! Boy Was I grateful to see    

That.

 

 

image.jpegimage.jpegimage.jpeg

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Hello ladies
Pmol and Snuzd
Sorry to hear that the hormones have stopped working so well ...we all get in a sort of comfort zone popping these little pills every day but they do have a shelf life for controlling the little blighters ...hopefully the oncologist will have something else in the magic bag to kick in.
Some ladies here have years on them ..some don't so it shows how individual we all are ...
Sending hugs xx
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Hi Snuzd. After letrozole failed I went on to Exemastane. Didn't stay on for long (my choice I switched to oral chemo as was fed up of the flushes and joint pain I had with all the hormone therapies). I have been stable with organ and bone mets for amlost 18 months now.

Good luck and hugs

Paula

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Hello

 

New to the forum. I have bone mets. Been on faslodex for a year. Was told yesterday that it looks like its not working. Another bone ans ctr scan in 3 months. I had primary 6 years ago had FEC chemo. Leterazole 2 years. Tamoxifen 3 years. Had radiotherapy on bone met in hip. Onc said one more hormone treatment left. Did not ask what it was any ideas. I'm usually so positive but feeling a little anxious this evening.

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Oh Jellytot! Don't know how much I understand... I got told last week that my treatment hand't worked and tumors are bigger and spread more... big hugs xxxxxx

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Thank you Nicky, I've posted in the hormone therapy thread xx

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FF - enjoy the weekend, sounds like you will have some fun and you deserve it after all the stress you've been under. That silly lady (director) doesn't know what she's missing and it's such a shame that staff and patients are unhappy enough to leave. Hope the new job started well and continues to get better. Maybe you could get hubby to do a few of out of hours pranks to get the new director worried he he!

Jellytot - obviously being told you have bone mets as well is a bit of a blow but as you've said it probably was there anyway but not noticed, often bone mets appear in more than one place so a solitary one could have been missed first time around. To be honest I have no idea if my bone mets were present when I had my primary as I didn't have any form of scan to check anything so they could have been there longer than I think. Anyway the good thing is you have started treatment and this will hit all mets so everything will get treated. Just be aware you may suffer with menopausal symptoms quite badly being younger than most of us who have been on, or are on, hormonals. When I had tamoxifen and zoladex after my primary I had awful menopausal symptoms as I was quite a way off from my natural menopause. I don't need to alarm you but you may need time to adjust as you're so young and they could be worse than some of us older ladies get/have had. It's worth reading the hormonal treatment thread in the main forum as there's more ladies taking them with primaries at a younger age. Also do keep a nite of which brand you get - some can give more side effects than you expect. I have had arimidex when it was still branded then changed to the generic version (due to NHS costs and it coming out of licence) and boy did some brands make me feel extra rough! Same with letrozole a few years ago. If you think one brand is better, or worse, than the others you will get make sure your pharmacist makes a note, they can try to get your preferred brand although it's not always possible.

Wendy, nice to have a bit of down time when the company PCs go down! Hope you don't have to make up the time though. Good luck for next week so treatment and it's not surprising you can get an inconclusive smear test result, I'm sure the various treatments we are all on affect the rest of our body in one way or another.

Hi to all other met some ladiies, especially the ones wearing their big knickers 😉 have a good weekend whatever you are up to - even though the sun has definitely taken his hat off for a while - must be the school holidays! 🌦

Nicky x

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Hi All

Well I am in work and having computer problems hence I decided to check in with yourselves.

Funnyface congratulations on your new job. Dreading going to work each day because of a boss is stressful I have been there but always managed to come out The other side.

Jellytot don't despair your Onc will do whatever they can. That is what I keep telling myself and as I am a glass half empty person it is hard to see the positive but 6 months on from my diagnosis I am coping better.

Went for a smear test this week and was told it may be inconclusive due to my condition. So that upset me and I have a sore throat that won't budge so have been told to see the dr. I am trying to forget I have this but every week seem to be at the drs or hospital. Next week is injection day but after that am off on hols. Cant wait.

Have a great weekend all.

Very dull here in London and looks like it will rain again but being positive I have a brolly😄

Wendy
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Ff
That is the way to interview for a new job ..hands on and not answering silly questions on a form !!
So go for it and enjoy ....
Moijan and remade
Pity u don't live near to each other as u could start off a "spikey ball club" ..wish I was a fly on the wall in your houses though !! Ha ha ..
I'm trying to do a lititle medication to help me sleep but not very good yet ..all that deep breathing just makes me cough but I do a few omms and aaghs and have bought some Buddha's too ...but I prefer to rub their bellies for good luck for my lottery ticket at the moment !!
But little steps xxxxx☺☺
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Jellytot ..
Welcome to the letrozole club ..Jeanette and myself are very much on the same page with our mets ..although my oncologist doesn't do tumour markers like many others ... it's a easy little pill to tolerate ..but if u do need support from us ...just shout out !! Jeanette and I both have itchy scalps ..I think people watching me must think I have nits !
Hugs xxx
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Hi funnyface.

congratulations and it just goes to show what a nice person you really are when given a job just by meeting you and enjoying the short time with you.

i wish you all the very best

Renee

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Thanks ladies for your votes of confidence! I had another good boost, too.My new employer never really gave me a formal interview! She had me come in fill out an application and meet her and the lady I would be working with the most. The lady I met with plans the activities and I will be helping her with that and implementing them. When I arrived she was cutting up cake for the residents. I grabbed a pair of gloves and pitched in and said we will talk while we work. We only talked maybe 15 minutes and I showed her a couple pictures off my cell phone of my creativity. When they  let me know I had the job, they Saud they loved me instantly and didn't need a formal interview! They didn't even interview anyone else. I will let you know later how today goes. It's another 3 hours away! Then we are leaving from there for the shore! I'm taking my kindle with me, so I can let you  ladies know.

 

Carolyn, the lace looks quite fancy sticking out of the Cake is! Wow, what a new trend I could create. It sure would be more comfy than thongs! 

 

Renee, Thanks for the giggle! Lol you would get arrested here if you did that! 

 

FF

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Jellytot, I'm sorry you got some bad news. Mine is in my spine too, but only one spot. So far, I wouldn't have known it was there. No pain. We all understand how you feel. I was dealing fine with it being in my lungs and lymph nodes in the chest. Even when my lungs got more tumors and then collapsed. I still felt we were containing it at least. Then when I found out it moved somewhere else I was bummed. You have already been through a lot! I hope letrozole kicks it to the moon!! FF

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Hi Jellytot, sorry to hear you have had some bad news but please don't be too down about it.
I like Carolyn am in the "letrozole gang" and it had been amazing for me, actually I have just spoken to my bcn and got the latest results for my tumour markers and they are now comfortably sat at 17!! I have been on it now for just over 18 months and at start my TMs were creeping up to 176!
My mets are in my spine as well as my hips, ribs and femur.
Take care hugs Janette xxx
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Some bad news from me, the cancer is also in my spine 😪 It may have been there all along and was just too small to spot before but they've reviewed my PET scan and can see it there. Apparently my plan doesn't change in any way and my onc is still confident we can kick it into touch, am just devastated as every appointment feels like another punch in the face. In other news, started my first letrozole yesterday so at least the systemic fight has begun xx

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F/F good for you girl!!!!
Wishing the best of luck in your new job!
Hugs Janette
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Moijan, haha! My spiky ball keeps trying to run away from me along the wall to the door.

 

hugs

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Hi Ff. Good luck in your new job. I'm sad for all the seniors at the place where you were working but glad they had somewhere else to go. I'll be thinking about you next week while you wait for results. Bon xx

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Hi again Ramade,  its hard to keep making yourself shove that spikey ball all over your bum, isnt it when you have noone else around to encourage you?

 

( Carolyn - are we allowed to say BUM on here when its not an official swear day?)

 

but getting back to you Ramade....just realised we could get together and practice.....am thinking of going to the Summer Exhibition at the RA tomorrow....if you can meet me there we could 'display' ouselves

demonstrating how to wield the spikey ball.

 

Moijan💚💚💚😄

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Ff...yes, good luck. Now xx

 

 

Carolyn......ill put this in brackets so the others dont look too closely but

 

( arent those knickers...THE knickers you wore to that pub on the day we first met -along with our O.Hs?)

 

I had thought they were some new Devon summer fashion or such like....xx

 

Mx

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FF..........all the best with the new job! A fresh start now, and perhaps interesting too.  Let us know how you get on.

 

mo                      x

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hi funny face,

just great to read your post and good luck for the future ,,you are my kind of gal as i would have done exactly the same as you ,i once tipped a mop bucket full of water over my manager,[when i could lift it ] then went back the next day to ask him for my wages he owed me ,and received them. 

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Ff
I think they will be perfect under your caprice pants and what's a bit of lace showing ...they are going to be more comfy than those thong things we used to wear for fashion !!
Hugs for next week xxxx
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Carolyn, I will need them next week on T,W, and Thursday. Scan T results Th. Do you think they will stick out of my Capri pant legs? It would make quite a statement at my new job!! FF

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Sorry to disappoint but I haven't eaten much chocolate lately but today I ate a whole terry chocolate orange ..I feel like a hamster on steroids on one of those treadmill thingy they run on all night!!
Ff ....I'm glad u have left the stress behind and u now have a new challenge but the big loss is the patients as you are a very unique special person and not many of us could do that type of work.
Rest, relax the weekend you deserve it.
Hugs xxxx
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To all ladies waiting for scan results or having a bad time ..the big girl pants are all washed and ready for you to put on. medium-1.jpg

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Moijan, The spikey ball sounds interesting. It sounds like it might just feel good to roll it around on anything that aches. 

 

Carolyn and Renee, Funny you are talking about carpet cleaning! I just vacuumed and decided to take a break before I got out the carpet cleaner. My Maggie girl had a UTI and had a couple accidents, so it needs a good scrubbing. I really need new carpets but it's not in the budget. Like you Renee, my dog is more important.

 

To all of you ladies, I have been quiet. Work had me completely dressed out, but the stress is gone. They closed the dementia program I was in charge of! I figured they would let me go and they did. This new director has turned the senior center into a miserable place. She will eventually hang herself!  When they told me they didn't have another position for me, I got to have the last word! I got to walk over to my desk and get my resignation letter, signed it and wrote effective immediately! I had it ready bc I had a new job. I had already decided to leave. They were quite shocked!! The board me m bed who was with the executive director when they let me go said to me that I walked out before the director was finished speaking to me. I looked at him and said maybe she wasn't finished speaking but I was done listening and I walked out the door! I go Friday morning to hear more details on my new job and get my start date. I actually think they are going to have me start Monday. After my meeting at the new job, I'm headed to the shore again. There Is 12 of us getting together. I will be able to relax knowing I have a new job to return home too. I didn't realise how stressed out I have been til it was over! The day before I left I was off work and they cut everyone's hours and she hired two of her friends. Lol they didn't cut my hubby 's hours. He doesn't have to deal with her though, since he cleans when the place is empty. Quite a few seniors have left  too. There is another center close by that they can attend with their friends. I hate how this lady is treated them.

 

OK, time to get cleaning and packing! Have a good weekend! FF

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Well Moijan and remade will be thinking about you both and your spikey balls tonight ...ha ha 7906824-1.jpg

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image.jpegRamade....this is me today xx

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Yes Ramade, btm and hip felt a lot better this am...however, my drive to and from the hospital reset the problem!have moved the car seat again in the hope that it helpsxx

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Moijan, your post is interesting, had bad hip pain for weeks. Went to see a physio privately and she found it was the piriformis muscle in bum. Exercises with ball against wall plus stretches.it is improving now but took a little while.

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Now Carolyn, today has been interesting, I fed back to lovely onc that my p.n. was much better, casually mentioned my hip and I said 'well, it hurts if I touch it-it wouldn't if it was due to mets, would it' he said 'well, it would actually'. However, I think it's muscular and went to see chiro this pm -she delved deep into my btm muscles - said my pelvis is skewed( again) gave me some excercises to do with a spiky ball( relating to bum) and actually, I think she's right ..... prob not mets at all! Lovely onc did offer me an MRI, should things not improve-so have a back up plan. Xxx M
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hi carolyn

thanks for that ,i am going to speak to my oncologist as dont usually tell him how i am feeling and i dont have a good BCN she doesn't get back to me and only tried her twice in 7 months but nothing.

thanks again

Reneex 

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Renee
Tell your oncologist of problems as mine always says ..it's living with cancer and some sort of quality of life that counts ....
Maybe u need to train your dog to wipe her feet! My son's dog is a boxer. ..he's the most mucky dog ever ..he shakes his head and the slobber hits the lampshades, curtains etc ..it's a never ending job of cleaning up ...
Hope tomorrow is a good day for you.
Hugs xxxx
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hi carolyn ,

my carpets are also cream ,except staircase and it's a mixture of creams and browns,but as you say having the dog does not help ,although would rather have her than carpets ,

i am having more bad days than good ,but have my treatment monday and see onco on friday so hopefully he can help,strange disease this ,different every day ,but het i am here to  tell the tale ,what tale i dont quite know.

my friend is coming tomorrow so she will cheer me up ,always does .

take care 

Renee

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Hello Renee 

Well clean carpets .bet u feel nice and refreshed .having a dog doesn't help ..we have cream carpets...aagh spend so much time shampooing them ..going to replace with dark ones later this year ...no excuse as son is a carpet fitter ....

Hope u feel a little more cheerful now ..good days and bad ones ...

Hugs xxx

 

 

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hi all ,

not been on here today as felt too down to post ,but had carpet cleaners to do right through house and he cheered me up no end,  when he finished i gave him a tip and he said ,,all my tips got to cancer charities which i thought was very nice ,he then produced thank you letters from Mcmillan and cancer research thanking him for various donations,so one nice gent i thought.

rained all day here so very soggy and dull.

Reneex

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Hello Moijan
Maybe hip pain is just old age and not cancer related ..we blame everything on it or treatment side effects but forget things could just be age related sometimes and we would have got them anyway ...ha ha ..I'm quoting what my very kind friend always says to me !! But wise words xxx
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hi Chris...never had that, but maybe not anything awful xx

 

Carolyn, ended up at the gp because latterly got ache over left hip...thought was it a kidney infection but wee test showed nothing....so fingers crossed.

 

i wanted to share re Cannulas etc,,.at my hosp had to have three scans, so got them all on one day......mri, then bone scan then ct, so the one cannula dealt with all three instead of three cannulas.l.l.try and do that if you need to...have done it three  times during the past three years.( oh and none needed back of hand)

 

I am the worlds worst with veins!

 

best wishesxxx

 

Mx

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Hello Chris
Good to hear from you but as usual I have no answers but your GP is on the ball getting a scan done quickly ..try not to worry not everything is cancer related ..I had a growing wart thing on my leg for a year ..thought it was something sinister but it just fell off !!
Keep in touch ..hope some other ladies here can help more than useless me ..
Hugs to poor ladybird xxxx
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Morning ladies
Hope you are all coping well!
Ladybird's is really suffering with leg pain recently and also has grown a tangerine sized lump on her kneecap! The gp has booked her in at Didsbury Spire Hospital for a scan on it. Dr said local NHS hospital would take too long. It appears to be a bursitis type lump but has been there for more than two months. Anyone else had similar?
Take care
Chris xx
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Oh Jellytot!! I hear your pain!!!! They can do it on the hand too. Make sure you drink at least 1pint water beforehand and keep the armhand warm.  Also, tell them and thye use a blue needle or butterfly which are smaller.  I know that for CT they can't though...

i've got liver mei next week and panicking abiut the canula but they've said to see the girls in onc for them to do it.  Might help?

 

big hugs xxxxx

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Oh jellytot ..I do feel for you as most of us only have the one arm and the poor veins there harden and say "no more" ..I think I'm remembering right but the radioactive stuff for bone scan ..has to go in the back of the hand ...so maybe you will be spared the ow ow ow bit on veins that are newer!!
Hugs xxx