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Bone mets - please join in

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Re: Bone mets - please join in

Hi Renee

Glad you have finished your rads and hope the side effects wear off soon. I would take up the offer of a MacMillan nurse. They know and understand and will speak up for you if needed.  And you won't have to sit with her for 2 hours!

Hugs Bon xx

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Hi Carolyn,

yes had my doctor today for review and she said exactly what you are saying ,also told me she is leaving the practise ,not good news but will have a new face in two months time,

she also asked if i would like a MCMILLAN NURSE ,i did not know what to say as dont know if thats good or bad ,so have to think about that ,it has never been mentioned to me before so dont know what to think,

any answers gratefully appreciated.

take care reneex 

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FF really exciting. It's all the waiting ha ha. I adore my grandchildren and they really lift my spirits. I've had extreme pain these last few weeks. I often sleep in our recliner and it doesn't touch the pressure points. Getting into bed and trying to find the one position !!! I'm on a much higher dosage of morphine and nerve blocks. It's because my lower left rib has squashed nerves. Also I'm having radiation on the area next week. I asked for I've never been informed about this option it's only being on the forums that I knew about it. Disgusting really, I think I'm getting so angry because this scenario and many worse things have happened to me and it's only cos I had knowledge about certain things. I'm thinking of creating a leaflets for people diagnosed with bc and MBC. A good idea? 

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Ooh that's sounds really interesting seeing if there is a pattern of development of invasion. X

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Hi Carolyn, yes my CT is of a similar time mine is the 27th, see onc for results the following week so not too long a frantic wait!!!!! 

Letrozole hopefully still kicking the big Cs backside 👊

FF, glad to hear you managed a decent nights sleep, I always think you can deal with most things if you have had a good night's sleep! 

Take care ladies Hugs Janette xxxx 

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Hello Jeanette
Well got my ct scan booked for the 25th October. .think it's the same time as yours. ...but I'm having it done at our private hospital as a NHS patient so best put my posh underwear on for that !!
Hoping letrozole still doing it's magic
Xxxxx
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Hello Renee
Sorry u have such pain but rads will sometimes cause that for a few weeks before it gets better.
Hoping you are being well looked after by the family and getting lots of slobbery kisses from the dog too !!
Hugs xxx
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O funny face ...glad u got some sleep. .5 hours is better than nothing ..sounds like u r on the mend but a slow process of recovery! !
2 years ago ..I sneezed and cracked a rib ..took a month to heal and it was horrible as I couldn't breath without pain. Convinced myself with fear it was something cancer related though !!
Hugs xx
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HI FF 

GOOD FOR YOU AND KEEP GOING ,YOU WILL GET THERE IN THE END

LOVE RENEE 

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Thanks ladies for holding my hand. Last night I decided to be brave and try to sleep on the sofa. I took my muscle relaxer and my  pain pill, waited 30 minutes and gave it a try. I was able to do it with only a few twinges of pain getting comfortable. I slept 5 hours with no pain!! Then it was time to get up. It was a slow process, but I did it all by myself. When I would get pain I would stop and relax. The good news was these pains were quick and sharp but nothing like the ones I had been having! I have another chiro appointment tomorrow. Hoping this one will be the last one. FF

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Hi ladies, not posted for a while been taking a little step back but have been reading most posts. 

Funnyface, I had to jump on to congratulate you on your forthcoming grandchild, so pleased for you. Sorry to read about the horrible back pain you have been struggling with though, hope it soon settles down.

 

Nicky, congratulations on becoming a grandma/nana, I am so looking forward to having grandchildren but can't see it happening anytime soon! 

 

Hi to all the other boney ladies old and new, hope you're all keeping well and warm now the weather is changing. 

Hugs Janette xxxxxxx 

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Re: Bone mets - please join in

hi FF,

nice to hear from you although not in a perfeect situation ,but at least you know what it is and that must be a relief for you,so carry on with the treatment and you will soon be good to go again.

i have finished my rads last friday and since felt lousy ,so tired i could sleep on the clothes line ,plus this horrible nausea to deal with which i am hoping is from that ,

keep you chin up girl .

love reneex

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Thanks you so much about your kind and tender support. At least I know now that it is not that horrible. However I am going to have a word with the oncologist first to see why does she think I need that treatment at that very moment. Hugs to all. 

 

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Averlia, I'm sorry to hear about your second cancer, but glad surgery could fix you up. Thank goodness you don't have to add more chemo. I don't like radiation. I've only had it for 2 weeks to shrink a tumor that was closing off my bronchus and had collapsed my lung. I got pneumonitis from the rads and landed in the hospital. The swelling of my lungs lowered my O2 levels which made my heart beat rapidly. The heart not beating correctly then made my O2 levels go down more. I was in a vicious circle! Rads scare me now! After all the problems healed I did have great results. My lung reinflated!! Yes, I would do rads again bc of the benefits.Best of luck. FF

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I made a post about my back but apparently it is out floating around in the world. Thank you for your concerns and the congrats that you have sent for my granddaughter. It is not the spot of cancer acting up. I have a dislocated rib, pulled muscles, tendons or ligaments.I 've hurt my back before, but never the pain I was getting. I'm on muscle relaxers and oxycondone. Monday night I slept 9 hours in a row in a chair. I haven't slept 9 hours in many years. Yesterday, I went to the chiropractor and going again this morning. Today after chiro, I'm going back to work. My back is tender when sitting and walking. The muscles are sore after all the jolting and clenching pain. I slept in the chair last night again, bc I'm afraid to lie down.That is when the pain hits. I'm going to give it a couple more days before I try my bed again. I probably won't post much for a few days because the muscle relaxes knock me out. Hugs! FF

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Ff, how are you? Are you out of hospital and out of pain now? Do let us know, I'm thinking aboutyou, you're such a trooper!

Big hugs

ramade xx

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Hi all, I said I would report back on my spine radiotherapy. Now nearly 2 weeks after it I feel great, I was put on steroids for a while but off them now. I am now in no pain. Looking back I don't know how I carried on with th amount of pain I was in for a year. I am now back on chemotherapy. Good luck to you all whatever your decision about this, mine wasn't an option as it was starting to infiltrate the spine.

love to all as ever

ramade xx

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Hi Averila!

hope you are feeling well after the op.

 

i've got mets on my spine and pelvis and in the summer my onc sent me for some radiotherapy.  I honestly didnt think I needed it and as it's something that you can't have indefinite, didn't want to 'burn my bridges'.  Anyway, had 5 sessions and has to be said have been great.  Felt a bit uncomfortable during the treatment but once i did the sessions it has improved a lot and made me realise that I was in more pain than I thought.

 

you have to do what feels right for you so don't let anyone make a decision for you

 

xxxx

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Evening Funnyface

Hope your back is feeling alot better now.

Congratulations on your forthcoming grandchild.

Hope your treatment is going OK.

Linda

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Evening Avrelia

So sorry to hear regarding another cancer. Hope you are recovering well after such a major ooeration.

Regarding your spine I would think it is upto you if you want the radiotherapy especially as you say you have no pain. You are still recovering from a major operation which normally takes about 6 weeks.

Linda



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Re: Bone mets - please join in

Hi all,

I did not post here for ages and did not read to be honest, I think I only come back when I am feeling low and do not know what to do, quite a selfish thing isn't it.

I apologize, but probably some of you have felt the same way. I hope you are all fine.

Here is my small issue now:

I have been feeling ok, apart from my continuous bleeding dow there, so I continued insisting to be checked up and finally I was diagnosed with another cancer, this time endometriosis one, as if the other one is not enough. Luckily this one was a primary not invasive. I had a total histerectomy last week as they said that this is my only choice to have this one cured. No treatment needed afterwards. Now I am recovering. However my oncologist is not happy with the response of the bones so she wants me to have sam rads on my spine. I do not feel any pain at all and I am not sure I need that. I am so scared that after a radiotherapy I will start experiencing pains and I just do not want them, or at least would like to postpone them as long as I can. I know that I am selfish but I would highly apprecieate if you give me any kind of advise or share with me similar stories. I know that I will have to make the decision myself but yet, would be eager to know what you think.

Thanks

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hi FF

sorry about your back problem ,i have three ruptured discs ,do you think another one has gone as is quite possible and no other pain like it ,so i feel for you ,,hope they sort it and soon .

love reneex

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Hiya FF

I'm so sorry about your poor back ...must be horrible but hopefully they can find out what's caused it ....I think Barton here had something similar a while ago ..maybe if she's reading she can offer some advice ...
Hugs xxx
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Oh FF

Back pain is dreadful. I know. You shouldn't be surprised that it hurts so much when you are lying down. Everything seizes up. When I had a ruptured disc the pain was often worst at night. That's when I needed painkillers the most. Hope they find out what's causing the pain as soon as possible and can kill it.

Lots of hugs Bon xx

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Lovely news ff, a real pick u up. Great having the birth to look forward to and just after Christmas is a great time so you can avoid that winter blues feeling.so pleased for you, hope you are well.

ramade xx

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Bad night! I've been having back problems. Saturday night I slept in a chair, last night I tried to sleep in the spare bedroom. BIG MISTAKE!! When I lie down my back starts with spasms. They are stabbing, jolting an crushing. They take my breath away. Hubby was upstairs with the door closed. I barely got hold of my cellphone and called him. He didn't answer. You could drop a bucket of ice water on him and he would still sleep. I almost called for an ambulance myself, but could hardly get any words out of me. I managed to call hubby again, this time he answered. I screamed help and he knew I was bad. We tried for 45 mins to get me up. I was on my side and couldn't even get up on my elbow. Hubby would have to p read on my back every time I got a spasm. We ended up calling an ambulance.Hubby applied pressure to my back and the 2 other men pulled me up. OMG I will not be getting back in bed for quite a few days! I don't understand why this jolting crushing pain happens when I'm laying down. I can be perfectly still and it keeps happening. As soon as I'm out of bed it stops. My back was tender to the touch after this episode. But no more jolting pain.Sitting here waiting for the doctors office to open.I think I must need something for inflamation and a muscle relaxer. I want a MRI and if everything is OK an appointment with my chiro. I did read that repeatable can cause back pain. BY the way my finger nails have got thin and tender. So look much fun. FF

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Yay FF, congrats and enjoy the shopping.  We have just welcomed our first grandchild, a boy, a month ago.  Never thought I'd see the day, when I was dx with bone mets 9 years ago, so it's extra special.  The cuddles are lovely so you have plenty to look forward to.

Nicky xx

ps hi to all other boney, and other, ladies (and gent!). Hope everything is going well with your treatments, I've just had good news from my latet CT scan showing that Eribulin has knocked back the liver mets to a single one now and all bone mets are stable or healing. Phew, scanxiety over for a while.

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congratulations FF,

you will never ever have any spare cash again as all will be spent on this lovely child

best wishes to you and yours

love reneex 

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Congratulations FF
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Thanks ladies! 

Jobey my first baby was a 10 lb baby was presenting one foot down and one foot up. He was that way for weeks. They said no way, that I had to have a C-section. Lol he is my skinnest one now!

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Congratulations!! My first grandbaby a little girl is arriving on 18th of this month!! She's breech so coming out of the sun roof which is why I know for certain when she's going to arrive! huge excitement here in anticicpation , can't think of her without welling up so god help me when she's born!! 💖💖

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Whoop whoop FF....so exciting for you and you will make a lovely nanna ...enjoy shopping for all pink fluffy things ....that little girl will steal your heart and your purse strings !!
Hugs xxxxx
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I have some SECRET news! For those of you who are friends with me on Facebook, I have sent you a private message there. This may not go on Facebook or I will be disowned! I'm going to be a Grandmom in January. I will be shopping soon for a tutu and ballet shoes. Soooooooo stoked! FF

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Thank you Carolyn for your welcome. I am so glad I found this site.x

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Oh bon ..what a gorgeous photo ..definitely needs printing off and framed ..

Think we are meeting next Monday for coffee arnt we? Be nice to see you.
Xxx
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Oh Bon, what a beautiful picture! Definitely warrants a frame!
Hugs Janette xx
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hi bon,

what a fantastic pic i do hope you are going to frame it as something you may never see again so clearly and well woth keeping,thanks for sharing it with us .

love reneex

we have country file on tv and they ask for unusual pics for their country file calendar ,,,sure this would win it ..

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Hallo all

Did anyone see the harvest moon last night? My daughter took this picture of her children looking out across Start Bay yesterday evening.

 

harvestmoon.jpg

 

Love and hugs to all. Bon xx

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Hello Ben ten
Welcome to the forum. ..you will find a lot of support and help here .
There isn't many ladies on ibrance( paclociblib) yet because it's still not funded for everyone. If you search you will find a thread here with some information.
There's a lot of us here on letrozole ...but if you go into " going through treatment" ..hormone therapy you will find oodles of threads there too for info.
It's always hard to accept secondary dx but feel free to rant and rave as we understand ..
Xx
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Hello pippin
Yes denosumab does work like that ..I have mine 6 weekly and find I ache for a while before the jab and then get a couple weeks pain free between. .I get flu like symptoms for a few days after it too.
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Absolutely and get sorw near time of new injectoo. Didnt get it this week as calcium to low and i fair miss it x
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Re: Bone mets - please join in

Hi

I have been lurking about reading your posts since May when I had an xray of my hip after a fall. It showed a suspicious shadow which after a CT scan and biopsy was confirmed as a bone met. I have found reading your posts very encouraging and they have helped me through some very dark times while waiting for results. I had been on tamoxifen since my primary in 2014. I have been on letrozole since July and I am having my 2nd zometa infusion in a fortnight.  My oncologist is also talking about adding palbociclib to the mix. There doesn't seem to be many of us on it. I know it is new but I can only really find much about it on the American sites.  I have a couple of weeks to think about it but I am feeling a bit overwhelmed by it all. Had just got my head round the letrozole and 3 monthly zometa. Got myself all worked up about changing over to letrozole as I convinced myself I was going to have every side effect going. Tamoxifen was a breeze..... just a pity it didn't work. Anyway so far so good with the letrozole.x

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Hi

Anyone else find that pretty much immediately after the Denosumab injection the bone pain disappears then by the week before the next injection is due the pain is back at its worst only to ease off again straight after the injection? This seems to be happening to me.

Big hugs - 'cos it's the right time of the month!

Pippin

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hi funnyface,

you are so right ,as not looking forward to some nurse sitting for two hours to make sure i have no side effects from herceptin,i dont understand it at all as have had 11 sessions intravenousley and one in thigh ,so surely they know by now i have no reaction,i was hoping someone on this site could explain why this happens ,or even someone who is going through the same treatment.

as for the ambulance i am now going on friday so lets hope they turn up ,its not the drivers at fault it's the switchboard, and when speaking to them they dont appear very bright at all ,not that i am so clever but dont have to repeat questions and answers over and over which they always do ,plus they are not the nhs ambulances but some firm contracted out and can not give medical assistance ,just basic first aid ,but also the drivers are only paid minimum wage ,which is wrong as well ,but hey what is right at the moment 

we are into autumn temperatures now, around 15 degrees so definitely not summer 

take care .

renee 

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Renee, I wouldn't like a nurse sitting around either! What a pain! Sorry you didn't get picked up to go finish your radiation. I know you must have been upset. Wow, you are tall! I'm only 5'3" was 5'4"" but shrank one inch. 

 

Crazy weather here. First we were in the 60's, then the 90's, then back to 60's, now the 70'sand headed back to 80's. I keep pulling out summer clothes then packing them. Back and forth. Very annoying! 

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hi carolyn,

the hospital have told me i have to have thee nurse here for two hours every time i have injection ,which is every three weeks,yet i did meet a bcs nurse while at the oncologist on friday and she said the time had changed to a one hour slot ,but the nurse coming here as never heard that the time has been reduced ,as long as i get along with her i dont mind ,but a little awkward if we clash,so have to be on my best behaviour ,[very difficult for me]

like you i loved shoes and boots when able to use them and now i have lots of left foot shoes doing nothing ,although did get rid of some to a charity but they wont take strappy sandals or toe posts .

take care .

love renee

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Oh Renee. .what a let down not getting the last nuking done today but it will soon be over.
When I was having my bone juice at chemo unit last week. .lady in next chair was having herceptin by injection in her thigh ..so.much easier than iv and she was up and gone quickly ..

Wow having a nurse for 2 hours ..maybe u could just make a big pot of coffee and share some donuts. ..or even ask her to cut your toe nails even to fill the time !!
Hugs xxxxx
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Oh ff ..Lucky you loosing that weight but I know it was hard work for you ..I'm being miss piggy eating pizza as I type here! !
I've been out today doing some retail therapy ( got to be done) and I went to a large shoe store ...all the heeled boots and glitzy shoes were tempting ..then I put on my sensible head looked at the flats ..walked away most uninterested !!
All the money you save on choc and naughty food .you should put in a jar and then splash the cash on some new clothes.
Xxx
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hi funnyface

,i have just read your post and can not believe the weight you have lost and also the amount you still hope to lose as in my reckoning that will be nearly 8 stone,i can only praise you for doing so ,good grief what an achievment ,you should be so proud of yourself and guessing your family and friends are proud of you,

i have never been above 11 stone and i lost a full stone when my leg was taken off ,plus lost half a stone in the past year but now look too thin as around 5ft 8in tallso look scraggy ,and not a good look at all.

 

should have been for my last radio therapy today but ambulance did not turn up for me so now have had to re book for friday,,,on my second session of chemo tablets for two weeks and a week off ,but coping up to now ok and tomorrow start herceptin injections into thigh but in my home and the nurse has apparently to stay for two hours after its administered to watch me dont know why as have had 11 sessions intravenousely in hospital and always been ok plus one in thigh and ok with that ,but nurse reckons this happens all the time you are on herceptin,hoping someone can tell me different as dont fancy sitting looking at a nurse for two hours .

 

take care ,and also all ladies on here .

love renee

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Carolyn, I wear 10 wide in shoes. I was wearing extra wide. I have usually shop on line. I did have a lot of ballet type shoes but they are too loose now that I lost weight. Before I lost weight my toes weren't wanting to hold them on right. I'm having to switch to Mary Jane types! Feel like an old lady! In the US we use the term handbag, pocketbook and purse interchangeably. I usually say pocketbook bc my mom did. I usually use purse for a small "change purse"! They also use the term evening bag for using with a gown. Funny the differences in words.

I've been trying on clothes. Lol with 80 lbs.off I need new sweaters and some long sleeve tops. You should see the pile of clothes I have that doesn't fit! I will pick up a few items. Luckily I have a birthday coming and Christmas! I want to lose 30 more, so don't want to get too carried away. I want to be finished losing by May, then hoping I can start building my wardrobe back up. FF