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Bone mets - please join in

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Re: Bone mets - please join in

Hi Nicky
Your last post is the best thing i have read about SBC, I shall keep it somewhere where I can read it from time to time. Even after 18 months I am occasionally tempted to stray into 'what if ' territory. But it does makes me angry to hear of the experiences of women whose symptoms and concerns have been dismissed by doctors for months or years. Got to go, grandchildren are squabbling in my bed!

love to all B xx

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Hi Doodles,

 

yes I agree with what Carolyn and Nicky have said....its not useful to blame ourselves...I went thru something similar and have pm'd you.

 

hugs,Moijanx

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Thank you so much Carolyn & Nicky for your comments.
Angela

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Hello ladies
Hope everyone is sort of ok .
Yesterday I bought some peppermint tea bags in the hope of giving up Rennie type indigestion tablets ...well I did nothing but wee for two hours and the good bit ..when I went to bed later I slept for eight hours with no twice nightly tinkle trips to the little girls room ..a real unusual thing for me ..so thought I would pass on the tip ...they are caffeine free too.
Hope it helps ..might not but worth a try and no Rennie tablets have passed my lips for a whole day !!!
Hugs Carolyn xxx
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Hi doodles

As Carolyn has said please do not imagine for one minute this is anything you could have stopped. Breast cancer in particular is a very clever disease and will always be in remission, whatever your oncologist might say when you have completed your treatment for primary BC. As of yet there is no test to predict whose BC will return and whose will stay in remission. The majority of BC does stay in remission and that is what we all hope for when we have completed our initial treatment. However, like you mine was low grade (2 but nearer to 1) no lymph involvement and something like a 95% chance I would be here in 5 years (which is all the oncologists can tell you at present). Well, they were right about that, however by then I had bone mets! I used to think the whole 'what ifs' ie should I have had chemo, should I have had a mastectomy - both of which I didn't have due to the original pathology and also how small my lump was. However once I had to join the secondaries part of this forum in 2008 I realised it didn't matter what I had done or not had done as BC returns to whoever it is going to return to, whatever their initial treatment was, I just needed to read their stories on here to realise that was the case. I am glad that I didn't spend the 5 years between primary and secondary diagnoses beating my self up and worrying all the time that it was going to come back - that would definitely have been a waste of time for me. But as it had unfortunately come back I had to deal with it and this forum gave me the boost I needed to realise that ladies live for many, many years with mets, particularly with bone mets and, if yours behave in a similar way to mine (being low grade) they tend to respond well to treatment and don't suddenly become more aggressive. It is a very difficult time for you, as we all know too well as we have been there as well, so take time to accept what has happened, don't blame anyone for the diagnosis but accept that your bone mets will now get treated and stopped in their tracks. It takes time to adjust as it is such a shock especially if you have no inkling, as I did, of any particular aches and pains. However once a treatment plan is in place we all seem to be able to cope better, it's not easy but over time as you begin to live with SBC you realise you can continue (in most cases) doing exactly what you were doing before.  If you find you are not sleeping well or coping well at this time is is also worth speaking to your GP or a trained counsellor, something that some of the ladies on here have done.

Nicky x

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Hello doodles
I'm so sorry u are giving yourself a hard time but you must stop blaming yourself ..bone Mets are very clever and don't always jump up and say " hi here we are" ..most of us here have been overlooked with pains before being dx ...we put a lot of aches and pains down to old age or over doing some gardening etc ..most times they are but a few of us are unlucky ...
All you can do is look forward and focus on the treatment plan that will be put in place for you ....try to keep busy with nice things in the meantime .
Hugs Carolyn xxx
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Another sleepless night. I can't stop going over everything. My original primary cancer in 2012 was grade 1, no lymph nodes involved. I was diagnosed 26 March and had an immediate reconstruction 29 May. How can this have happened to me? I'm now torturing myself thinking it spread because I waited 2 months for surgery. Also I have been going to my gp for about 2 years with fatigue. I thought it was my thyroid, I never thought about cancer at all, but that was her job! The back pain I ignored longer than I should've because I have had a bad back over the years but I have mentioned it too. But I have on numerous occasions asked about cancer and was told I had nothing to worry about because I was grade 1,no lymphs involved. Last May at my yearly check I told my consultant I was getting hip pain too. I'm so angry at the whole situation. Also the day I was given my results , my consultant went to my GPs that afternoon. Does anyone find this strange? Am I overthinking it? My GP called me the next day and told me my consultant was at the surgery for 'a meeting' She said neither of them expected these results. I feel like they have messed up with me. Is it normal to be thinking like this? I know nothing can change it now but I'm going over everything and it's driving me crazy! I was even hospitalised last July with an infection and asked them could it be anything to do with cancer and was told no. Arrrghhhhhh!!!!! Sorry for going on 😞

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Hi Nicky, Glad you are back home with windows! Not very nice outside right now anyway, better tomorrow maybe, Hugs B xx

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So sorry you have had to be in hospital, Nicky - and in a room without windows (that is what I would find hard, although I don't have claustrophobia)! Glad you are well enough to go home now, though, although sorry you have to pander to builders! Endless rounds of tea, I expect!

 

Hugs. Barton.x

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Janette and Nicky, I hope she can get over it too. The one thing that I think is good is she didn't own the home. She rented it. So she can move somewhere else without having to sell first. I wouldn't want to go back there.

 

Nicky, Sorry you were in the hospital. I would think that a hospital room without a window would not be allowed by building codes. It is one thing if it's an exam room, but it should not be allowed as a patient room. Take care and keep well!! FF

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FF - so glad that they caught the cowardly intruder. How awful for the lady in question and it must be a huge relief for you, and any of your neighbours however far away they might be, that he will be locked up now.  Just hope the lady who was tied up and left can recover OK - mentally as well as physically.

Hi to all other mets ladies.  I have been reading but not posting much. A bout of flu put me in hospital with a very high temperature and, being on chemo, there were concerns that my wbc and neuts would be low.  However, luckily they were sky high but I was kept in overnight - in a side room as I needed to be kept away from the other patients.  This would normally have been OK but it seemed to be a room that had been made from the main ward and had no windows!  Very claustrophobic and very warm.  Glad to have escaped (this was last week) and finished my course of anti biotics and Tamiflu. Just what I didn't need on what should be a hospital free week, grrrrr.  What with that and having to be in most of this week to let some builders in I've not had much freedom recently and kept busy sorting some bits out at home that I had been putting off.

Hope everyone is as well as they can be on the various treatments and stages of the SBC rollercoaster.

Nicky x

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Oh FF, how awful for that poor lady, I just pray she can get over it! Something so shocking like that could put her in an early grave!
Hugs Janette xxx
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Girls I'm definitely relieved that he is caught and can harm no one. They left more info out! He had gagged her , taped her knees and ankles together with duct tape, used those plastic zip ties and tied her hands behind her back, put a reusable grocery bag over her head and taped it around her neck, beat her, strangled her, and told her she was going to be meeting Jesus! Then stuffed her in the closet! I'm crying as I write this.I work with seniors and can't imagine any of them going through that. She was one strong woman to survive all that plus no food, water or light for 4 days. Praying for Karma!!!

 

 

Stillhere, Thanks for having my back! Bring it on him!

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Nice wellies moijan
Do they do them in pink in a size 5 ?
Carolyn xxxx
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image.jpeg

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Wow, so glad it wasn't you, FF and he has been arrested! Mind you, anyone messing with our Yankee buddy would have got a severe kicking and run off yelping 😆 😆 😉 xx

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What a relief that must be for you, ff! Thank goodness he is off the streets! He didn't have to leave her there for 4 days - he could have rung the police and let them know where she was once he had escaped.

 

Anyway, so glad you are safe!

 

Hugs. Barton.x

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Hi ff
I was the old lady locked in a closet lolxx
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FF
What a relief that he's been caught and will get his punishment ...at 17 he must be so disturbed ..at that age all I wanted to do was buy shoes and handbags !!!
Hugs xxxc
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Oh that's a relief FF, they should through away the key.....scum bag!
Hugs Janette xxxxx
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OK girls! (For those of you reading my posts) They caught the scrum bag that stuck the old lady in the closet. We have a school for juvenile delinquents in our neighborhood. We have never had a problem in 21 years. This 17 year old ran away last Wed. We think he just happened to be going down the road when she pulled in and needed a car to get away. They are seeking to try him as an adult for attempted murderr + other charges. It is hard to explain but if you walk down the road about 1/4 mile straight ahead is my drive. He had to turn left onto the main road. He really should have went straight up my drive where he woukd have been out of site! This school is one if many that are part of a place called Deverux Foundation. Actor Sylvester Salone attended it. Thank God they caught this thug!! FF

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Bonariensis, I will keep that in mind if and when I have to make a switch! Thanks, FF

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Hi Funnyface
Back to the subject of painful knees - I'm so sorry they are so bad. I haven't taken Letrozole but Exemestane has a similar if maybe not so serious effect and i've found that it seeks out and aggravates any joints or other bits that were suspect before I started taking it B x

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Oh, ff, you must be terrified! Please be extra careful, and aware if anything looks strange when you get home - drive fast in the opposite direction and call the police! You probably know that anyway!

 

Hugs. Barton.x

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What a terrible thing! Take care Funnyface
B xx

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Omg FF, that is terrible! You take care hun!
Hugs Janette xxxx
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FF
I agree jail is too good for these people ..they get fed, watered and pampered in prison ...more than lots of good people get these days.
Just u keep safe ..keep house locked etc etc and don't be afraid to shoot !!!
Hugs xxxx
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There also was a lesson in this as my husband pointed out! Her car wasn't there since it was stolen, so the daughter in law could have just left and said, "I guess she went somewhere!" Thank God, she continued inside to look! That poor lady couldn't have lived much longer without food and water! Four days is a long time for a young healthy person, let alone an elderly person. It teaches us to persue what you went there for. Call the cops if you don't have a key or have any fears! Listen to your instincts! Better to be safe than sorry! I just hope they get this person! They are trying to figure out if these home invasions are related to each other. All of them have been with people home!  People have been hit over the head with a gun and knocked out in most of them. If they have a gun the intention is to use it! We do have one law here in most of our states, if you commit 3 violent crimes you can be sent to jail for life with no parole! Hope if they get this person that this might be possible! Jail is too good for this person!! FF

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Omg FF
That is terrible and what a worry for you especially as u live so isolated ....yep u need to get armed and dangerous as protection but how horrible that u can't just live in peace and quiet with this illness. The world is a horrid place especially when u get older and more vulnerable .
Sending hugs across the pond ..
Xxxxxx
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OK friends I have a new FEAR!! There has been a few home invasions in our area. As in coming in and robbing people in broad daylight while they are home. The one that was in the news today was on the road I live on!  Just three minutes down the road. Last Wednesday a 72 year old lady had just arrived home. She was grabbed by a masked man dressed in black and hit over the head. He then tied her up, put a plastic bag on her head (luckily it was loose)  stuffed her in a closet and left her to die. He then stole her car and left! Her daughter in law had stopped by this past Sunday to do her normal check on her bc she lived alone. She found the poor lady in time! She was in that closet for 4 days before being found. I had drive into town  on Sunday and was on my way home and an ambulance and police car passed me. When I got closer to home I saw 3 police cars at the house, but had no idea this is what happened until I heard it on the news today! This girl us applying for her permit to carry! I already know how to shoot. Hubby and I like to target shoot! I'm a good shot! My house sits way back in the woods! I can't see the road or another house, but this means no one can see anything going down, either. I feel like a sitting target. FF

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Carolyn, Sorry my kindle changes letrozole to that every time I type it!  I missed fixing that one!

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Hello pippin
As far as rads are concerned ...they say two weeks and that's about right ..I had a big one off blast and it was two weeks ...15 months later I'm pain free in that area ...I don't take any pain killers ...the denosumab might give u some bone aches for a few days mid month though ...but I'm sure u will be back to marathon running or bungee jumping soon!
Ha ha ....xxxx
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Hello Doodles, welcome, but sorry you have had to return to the website! I hope you get settled with a treatment plan soon - everyone else is right - it does help a bit knowing something is being done.

 

Janette - I thought it must be a real thread, too! Doh!

 

Pippin - sorry, but I can't help with that - luckily I have never had to have pain control rads (yet, at any rate!), but I'm sure someone will be along soon as I know quite a few ladies have had them.

 

Carolyn - so sorry your teeth are still painful (probably not caused by your cold, then). It's miserable having painful teeth, and all the time you are dreading the visit to the dentist! Well done with the new tablet (but naughty grandson to break it - not deliberate, I am sure though). It is fun setting up a new tablet or phone, isn't it! And the thrill of it arriving in the post!

 

Hugs to all. Barton.x

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Hahaha! Omg I'm a numpty! Thought it was a real thread 😂😂
Janette xx
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Hi Stresshead, in reply to you post of 19th Feb I think you were referring to something else. I had been going on about calcium and vit D, just mundane stuff!

 

Hi Doodles123, I feel for your situation re your kids. My three are a bit younger. I am actively trying to prepare them for when I am not arround. I am very focussed in trying to do this in a positive way and I guess my personality is such that I find the albeit uncertain deadline (excuse the pun but I have a horrid sense of humour which I just cannot get rid of) very energising (not quite the right word but I think you will get my meaning). Appart from the practical things though the emotional side is tougher particularly for the kids.

 

I am at my PC 'cos I am finding walking painful and difficult. I had RADs to hip and pelvis 11 days ago and the first Denosumab 8 days ago.  For a good few weeks before this I was asymptomatic. I want it to get better again. Does anyone have any experience of how long the RAD-related exacerbation of pain lasts? 

 

Pippin

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Jeanette
The swear thingy is a joke ...as we get bleeped for naughty words ...I'm too much of a lady !!! Ha ha.
Glad to see you posting again ..hope u ok and like me hoping for spring soon ...liking the lighter evenings already ...
Done a little bit of retail therapy lately ..not a big spend but grandson dropped my tablet and so I have just bought a new kindle fire for playing my bubble games on ...my lovely postman brought it today so I'm like a little kid setting up today !! I use my phone for e mail's and laptop for shopping so tablet a small part of my life really !!!
Carolyn xxxx
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Hey Carolyn, what's this "swear Wednesday" thread all about? I'm a bit useless on here I only tend to hang out on the boney thread!
Oh and don't worry I'm doing a good job of eating your share of chocolate! 😆😆aww but seriously I hope you get sorted soon!
Hugs Janette xxxx
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Hi Doodles, yes we all get what you mean about being angry with the world, we've all been there and still feel like that some days! Like you the only thing I thought of when I got my mets dx was my children (25 and 27) it broke my heart. But you do toughen up and "learn to live with it" and like you said this forum is an amazing support.
I hope you get your treatment plan in place soon.
Hugs Janette xxx
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What is metronome ..I've googled and its says its a musical instrument ..doh .
Well at least nothing sinister going on the knees but sounds really painful for you ...surgery on knees is a big upheaval that u probably won't want to go through ....
I do have bone Mets in my right knee but apart from creaky ..manage ok without any pain relief .
I am to see dentist but waiting for a bit longer since denosumab finished 7 weeks ago to see if the teeth get any better ..it seems a different tooth every day ..sounds stupid really but its liveable and yes I've got a nice mouthwash I swig all the time and a very soft toothbrush !
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Carolyn, Yes my knees were scanned last summer . I had a bone scan. All clear. Plus they both had MRI's. It started 2 weeks after I took the letrozole. At first I thought I had twisted them too much while camping about 2 weeks b4 they started to hurt. Then I realized they should have hurt straight away. I went on line and found all the comments on letrozole and realized this was the culprit. They are also worn out! The combo effect if worn out/letrozole isn't good!!! It us working so well on the cancer I won't give it up! 

 

I hope you get to the dentist soon! Some pains I can make it through, others I can't! I'm at my worse with tooth pain. Would magic mouth wash help any? I wish you could have seen me one night. I searched the internet for ways to relieve tooth pain. Ibuprofen wasn't working and I had no good drugs!, I was like a mad scientist mixing up solutions and trying  them. I'm sure I looked like one too with my reading glasses and robe on, plus my wild bedhead hair! 

 

Have a great day! FF

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Hello doodles ..love your name
Unless I back read your last posting ..i cant remember if you know yet what treatment you are having or are you still waiting to see oncologist ...once I had the dx ..I was put on letrozole, adcal had rads and a hip op within a week .so nhs did me proud . ( and hospital dentist took out two teeth ready for denosumab the same week!!)
Anyway ..why not join in Wednesday's swear day !!
Carolyn xxx
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No worries re the SD. It IS good to laugh tho, isnt it? Have been giggling all week.

 

Now back to bed for a short snooze

 

Mx

 

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Thanks moijan
I feel like putting the teeth miles away on a naughty step somewhere else.
It's got a good side ..I only eat soft food now and am loosing a bit of weight but can still manage to suck the chocolate !!
Next step ..Heinz baby food !! Ha ha xxx

Ps : I'm not leading with the swear day on the other thread ...u suggested it ..so you start ..people might think I'm not a lady !!! Ha ha
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I think you are all amazing every single one of you. I was told last week I have bone mets and I've not been handling it very well at all. I'm angry at the whole world right now. I feel so much better already having read some of your posts. And I do have hope for the future. I'm just stuck in limbo right now. I know from last time once a treatment plan is in place I'll start to feel better. It's just so hard to come to terms with. Like others have said , more than anything I don't want to leave my 3 daughters who are 17,20 &23. Love to all xx

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Hi Carolyn

Hope your teeth stop being so very naughty... you could try sitting them in The 'naughty chair'. Seriously tho.... I'm sorry you are suffering xxx hugs, Moijanxx
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Hello FF
Thanks for asking ..yes tooth pain comes and goes but is worse at night ...its not any particular tooth ..all of them but not jaw pain that is a side effect of denosumab.
Will see dentist but waiting a bit to let denosumab out the system a bit more before being prodded and poked !!
Reading your post about your knees ..you must be really struggling to be taking that amount of painkillers a day ..have your knees been scanned as the normal ct one only covers the torso ?
Carolyn xxxx
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Carolyn, Thinking of you! Hope are able to get the tooth pain under control. I know for me they always hurt more at night. I'm a baby when it comes to pain and sleeping! I think it'sbc I don't sleep well in a goodnight let alone a badnight. My husband can sleep through anything. Sending you HUGS! FF

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Avrelia, I second call your nurse or doctor! That said, I will admit I'm great at letting myself suffer til the next appointment. Letrozole has made my knees scream! I'm on oxycodone + 3 ibuprofen for them and they still hurt! It brings the pain level down from a 10+ to about a 6 on mist days! Some days it does nothing! I find it works better if I keep on a routine with it! Good luck! FF

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Avrelia, meant call the BCN!
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Aveelia
It's worrying you, so best not leave it... why not ring the BCC and if she can't help, then try and get an earlier appointment if worried

I too have painful knees... often letrozole or other hormonal tabs seem to do it, but mine have always been painful from lifting patients in an earlier life!
Do seek help. I find losing weight helps, but actually I've lost weight currently and knees still hurt.... but am not screaming( yet) like you do try and get some reassurance xxx
moijanxx