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Bone mets - please join in

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Re: Bone mets - please join in

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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Re: Bone mets - please join in

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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Re: Bone mets - please join in

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
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Hi all, the discussion about surgery is postponed for the time being, as my CT scan showed good response in December, but my bone scan showed some new sclerotic mets. The conclusion of the oncologist for the time being is that they cannot call this progression, but she needs to do another scan in the end of March. Meanwhile i got a horrible knee pain just a week ago, and it is getting worse. I cannot fold my leg, whithout screaming of pain. Have tried ibuprofen, paracetamol, nurofen, gentle massage with ointments, none of them is working. I have read somewhere that it might be due to tamoxifen, or a post effect of chemo. Anyone having such problems? My knee is a bit swollen too, do you think that I should make an earlier appointment with the oncologist, asour next one is due on 5.04

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Hi Funnyface Nice to hear from you again. I was put on denosumab about 3 months after starting exemestane which tends to make your bones brittle. I have achy joints but have never known which of denosumab, calcium or exemestane is responsible, maybe all 3. I had 2 bone mets when I started.

B xx

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Hello FF
Well hope things are ok with you now and its always the simple things we take that give us problems ..99% of the ladies here have no probs with denosumab but trust me to get a wobble with it !!
Carolyn xxx
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Hello Helen
Nice to hear from you and sorry kadcyla has let you down but you can now join the erubulin club on the other thread ..lots more ladies seem to be getting it now and probably you can support each other.
Yes I need to get back on denosumab asap once the teeth get better.
Carolyn xxx
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Hi Funnyface

I just have the one met at L4 and have the denusomab jab every 4 weeks and take 1 adcal a day. I have a phobia about teeth so regularly have nightmares about ONJ but apart frm that (LOL) I don't have any side effects from the treatment itself.

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Carolyn, My onc had said if I didn't want to do the denosumab to increase my calcium to 2 daily. I never have many problems with medications, but if I do its often some simple medicine that gives me a problem! I took the second calcium I hurt everywhere (worse than I already do) and severe stomach ache. The one tablet doesn't bother me! I also had a rough time with metformin, very sick on it. I have to take extended release. Yet, I can count on one hand how many times I've had to take an anti-nausea for chemo. Crazy! I was just wondering if people with just one or 2 bone mets take the bone strengthened or if oncologist wait til you have more. I did a bone density test when I started metronome, but they haven't checked it since. Maybe, I should have that checked. FF

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Hi Carolyn

Sorry to hear you're having problems with your teeth, hope you get it sorted soon. Touch wood I have been ok with my teeth in the last 4 years that I have been taking denosumab - I call it my wonder juice, it seems to keep my bone mets stable, shame the liver ones have to spoil the party Smiley Frustrated

Take care everyone, all the best with your treatments. I have started eribulin today so fingers crossed this works for longer than kadcyla (5 cycles).....

Love Helen x

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Hello FF. ..welcome back ..missed you and hope u r de stressed and ready to join the mad house again!! Ha ha.
My oncologist says he likes three months before any dental work but obviously if you loose a front filling on Xmas eve like I did ..it's not a choice!
When I first got dx with bone Mets my oncologist said that eating plenty of dairy was better than any treatments she could prescribe !! Soo I eat plenty of yoghurt and proper butter ...will probably end up with a heart attack now but hey hoo ..I'm trying to do the right thing.
I wouldn't like to say either way whether denosumab would be right for you as I'm a numpy with medical stuff but it does have side effects !! ( well for me !!)
I'm also going to ask about taking more adcal calcium tablets daily as I only take one at the moment.
Got hurricane Doris here at moment ..it's very windy and carrier bags and things seem to be floating past my Windows !!
Carolyn xxxx
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Ouch! I hurt just reading about your teeth problems ladies! I have never had strong teeth. Mouth full of root canals and crowns! One tooth had two root canals, which I didn't even know they did! Last year I lost 3 molars all in different sections of my mouth. Luckily you can't see them when I smile. My oncologist suggested denosumab for my one bone met last summer. I refused bc of my teeth. Also the bone has been stable for years and somehow no one had even told me I had it for years. Curiosity question here.How long do you have to be off denosumab to have dental work? Also do you bone met girls think I was crazy not to take the injections with one bone met. The bone met is in my spine at T-11! I don't want my spine to crumble or anything bc I didn't do the bone jab. 

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Hiya ladybird
Wow u must be a VIP or something to get a home visit from the doc !! It takes weeks just to get a appointment at our heath centre !
What a shame there is so much pressure on nhs these days ...I remember as a child ..doc being called and then him sitting down drinking tea and eating my mum's scones so relaxed.
But that does show that laughter is indeed the best medicine !! Hope everything is tickity boo with you.
Xxxxx
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Morning Ladies

Thus should cheer you up...

Our doctor visited us at home this week which was a first for him. He's a very jokey type of person and we have a few laughs when we see him. As he walked through the kitchen he was turning back to me and making small talk when he completely missed the carpeted step into the lounge.

He went flying in a crumpled heap on the lounge carpet. He then started to laugh almost hysterically and when we realized he was ok we all laughed like never before.
We were all in tears!
They say laughter is the best medicine, it certainly was that day.
He asked me not to tell anyone:-)
Keep smiling
Xx
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Bel
Very envious of your summer house too ..think of all the relaxing you can do in it and make sure no one starts using it as a dumping ground for their stuff though ...
i think with spring coming we will all feel a bit more energetic and the bones less achy .
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Hello bel
That was a very expensive strawberry Bon bon but hope u enjoyed it. I only take one adcal a day and was wandering whether I should be taking more as my teeth are so weak so I must ask.
I have always been fine with calcium levels but it is a very strong injection and can cause this sort of blip.
I'm on letrozole but I'm sure I read here that ladies on faslodex do get very tired as its a side effect of it but if its doing its job ...then go with your body and take little naps etc !!
Hugs Carolyn xxxx
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Hi Caroline and everyone else.

it must be that time of year, I was chomping away on a lovely strawberry bonbon at the weekend and found a very large filling embedded in it! That will teach me, but I'm not really a chocolate fan unlike you!! 

Well went to have my 7th denosumab on Monday and they postponed so that I can have the filling replaced! But then in checking found my calcium levels too low to administer anyhow. Now on double doses of calcium! 

Have you ever had low calcium levels? 

Anyhow not a wasted journey still had my faslodex injections. Now got the usual sore buttocks!! 

Im a bit washed out at the moment I think that it's finally hit home my SBC, feeling very fed up, visited GP whos prescribed anti depressants and sleeping pills for a month to help get me back on track,.

The hardest thing is looking ok, mind ok and wanting to do stuff, like work, gardening and outside stuff (we moved to a small holding 6 months prior to my SBC diagnosis)  but body not cooperating! 

Im hoping this is only a blip and things will pick up once the sun shines! 

Any advice would be appreciated! I've just bought a summerhouse so that I can sit outside even when a bit chilly, hoping that once it's up in about 3 weeks it will cheer me up.

sorry for the long post.

love to all

 

Bel xx

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Hello didi
I think I'm one of the few that is suffering a little bit with denosumab ....but I have bad teeth and had to have two big ones taken out before I could start 14 months ago too.
The first 6/7 were fine but then I started getting a lot of bone pain with it but very easy to cope with ..paracetamal.
I had a easy filling done ...no drill or injection and then two weeks later had denosumab and it seem to make all my teeth sensitive etc. I lost another filling and have broke one so I've stopped it to get the dental work done. I also had a cold and it seem to hit my teeth and gums too.
I'm sure you will be fine with it and its a very good treatment with good results. I will start it again asap.
Carolyn xxx
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Hi Carolyn sorry you have tooth trouble.i hate going to the dentist too. I might be starting denosumab soon when bone scan results come in.could I ask what side effects you get from the injection?i need a broken tooth and root removed in hospital (7th march).once on denosumab can you have dental fillings etc .the list of side effects worries me especially the joint/bone aches as I am on letrozole and getting terrible stiffness in joints/aches in bones so couldn't bear it getting any worse.take care Didi

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Hello ladies
As its been quiet here the thread was slipping down the list so I thought I had better post !!
Well my denosumab was cancelled this week as my teeth are all playing up so need a dental visit ...aagh hate it. Didn't miss the blood test either as veins vanishing when they see the needle.
Hope everyone is ok and coping ...
Carolyn xxxx
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FF...,will miss you. Have a good rest and come back to ys as soon as you can.take care..lots if love, x

Pippin, I have calcichew tablets..I will check what's in them. They are quite big and I prepare to swallow rather than chew them,although when I was in hospital the nurse made me chew them as the ingredients are released quicker and better??.x

 

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Pippin, i too have been thinking sabiut this stuff for a while but want ghe right stuff from a reputable place...are you orepared to share yoyr source? You can pm me if you feel able to.x

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Jeanette
Oh the thought of a creme egg makes me want to rush to the shop and buy one now.
I used to have a posh friend ..used to cut the end off and use a teaspoon to eat the inside ..not for me ..just plough right in ..sod the mess !!!
Carolyn xxx
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Hey Carolyn, my hubby has just home with a Cadburys creme egg and mini eggs.....my first of many! 😆😆 Hugs Janette xxxx
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Hello Barton
Yes feeling quite chirpy ..no actually high on chocolate again ..ate a whole Terrys choc orange ..gave them up for a while ..tried after eight mints as thought dark choc more healthy and mint good for my heartburn but not keen !! Managed a large box of chocs this week courtesy of hubs for Valentine's day ...
Trying to resist creme eggs that are in shops ..not for health sake but for my sensitive teeth !!
Carolyn xxx
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Hello Maldives, sorry to read you are suffering with nausea. Did the hospital give you any pills for that? If not, I should ask for some.

 

Carolyn, you sound chirpy this morning! I have several drawers like that, not just one! However, I do still have all my cutlery - apart from 1 teaspoon, which I think I must have chucked away with a yoghurt pot years ago!

 

Hugs. Barton.x

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Ladybird, so glad the MacMillan Nurse is so good - it's wonderful feeling that someone cares enough to go the extra mile for your wife.

 

Hugs. Barton.x

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Hello B, glad you had a lovely week in Dorset -reminiscing is great, isn't it?

 

That's a bit extreme of the hospital, isn't it? Over a month and a half postponement! And that's two whole months from today! No wonder you are upset. I sometimes wonder if they realise how much it affects all of us anxiety-wise.

 

Hugs. Barton.x

 

Edited to add: Yes, looking forward to next Friday!

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Hiya sue
So sorry u are feeling sicky with the cape ..goodness knows what I would be like on it ..I can just see something on tv and feel sick
I had a funny five minutes yesterday and cleared out kitchen drawers ..bet everyone has them ..you know full of old chargers we had for phones years ago, bits of string,watches with no batteries etc etc.
And ...the cutlery drawer ...why do we have more forks than knives and where do all the teaspoons go ? Sure I have a little elf that visits and pinches them ....ha ha
Hope everyone is happy ( ish)
Carolyn xx
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Hi carolyn
Not really to be honest it was a great feeling but ive suffered since. Cant win can we. No magic mushrooms im afraid. And havent been able to walk my doggie for a few days.
Feeling very sicky last two days with the cape
But i think its working already as the numbness in my jaw is receeding. The pressure must be off the nerve. Its been numb since xmas. Fingers crossed another two cycles to go, then back into the "shall we try"zone. How are you doing? You always seem so bubbly? Xxx
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Hi nicky thanks for the tip. I take 4 a day of the big chewable ones. I didnt mind but my teeth are hurting and im strugling. I will be onto my doctor on monday. Xxxx
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Hello everyone,

 

Hope you are enjoying the weekend and the warm weather. I managed to get out and potter in the garden this afternoon which was great.

 

I'm a bit late to the debate about cannabis oil but thought you might be interested to read this informative article on the Cancer Research website and make up your own minds - http://scienceblog.cancerresearchuk.org/2012/07/25/cannabis-cannabinoids-and-cancer-the-evidence-so-...

 

Take care,

 

Marion

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Hello B
Glad that you have had a good week in Dorset ...phew that's a bummer having your oncologist appointment postponed ..I feel for you as we live on a knife edge with treatments not working after a certain time ..I'm the same with letrozole after 15 months and have a scan end of March etc.
I think Barton is setting up.lunch next Friday so we can have a good catch up and put the world to rights !!
Carolyn xxxx
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Hi Janette It'll be hard for a bit without your little girl but when you do see her again it will be great. I remember thinking how wonderful it was to have grown up children when they took their first steps out into the world. 

Maldives - glad to hear you are feeling well and coping with cape (mostly)

I've been on a nostalgic trip to Dorset where I used to live with husband, daughter and grandchildren, a great week. When i got home I found a letter from the hospital postponing my 6 monthly appointment with the onc from March 1 until April 19! I'd been psyching myself up, now feel at rock bottom. He had said exemestane would work for 12 - 18 months, well the 18 months is almost up.

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Hi everyone
Had a surprise visit from a MacMillan nurse this week. She was suggested by our denosumab jabber!
My wife has some incontinence problems and the nurse felt we should have an urgent ct scan. We explained that a scan had been ordered by our onc but she felt it should be speeded up and contacted our gp. In the end it was decided to wait for the scan as the problem wasn't new.
We were very impressed with the MacMillan nurse and glad she had made contact.
Good to have help like this.
Xx
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Jeanette
Always hard when the kids leave home and the first few weeks will seem eerie but just think less shopping and washing and you will soon adjust ....
Carolyn xxx
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FF, totally understand wanting a bit of time out, I did the same a few weeks ago....will miss you though, take care.
Well my little girl flew the nest yesterday! 😢 really going to miss having her around but also very proud of her!
Have a lovely weekend ladies.
Hugs Janette xxx
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Hiya FF
Yes going to miss you but we all need to step back sometimes so relax and de stress and have a nice latte / choc cake ...
Carolyn xxx

Ps. Nicky I love my tuitti fruity adcal tablets everyday ..am I weird or what ?? Ha ha .
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Hey FF. We will all miss you but take your time - or just come back to let off steam - we will all understand whatever you want to do.

Take care and don't get snowed in.

Nicky xx

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Hi

Have you tried the Ad-Cal caplets? You can get them on prescription rather than the chewable ones (which I hate but the way and why I get the caplets) They don't seem to have soya listed and don't need sweetners added as you don't chew them, you just take them with water, but do still have a few additives you may want to check out. You can find the list of ingredients if you check online for the caplets. I don't think they are regularly prescribed as they are more expensive than the usual chewable ones but you would be able to get them from your GP or oncologist.

Nicky x

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Hi All

Has anyone found a calcium and vitamin D tablet that doesn't contain soya or other nasties? There seems to be a lot of sweetners and E additives which I am not keen on though I have to take them as really need the calcium and vit D.

Pippin

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Hello Ladies, I want to wish you all well over the weekend and the next week! I'm taking a break for a bit! I'm OK just feel stressed! I will return! FF

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Hello sue
How nice to hear from you and you are putting me to shame with all that house cleaning !!
Sooooo..the cape is giving you some extra energy which is good but I'm thinking that whilst walking your dog you have found some magic mushrooms or something !!!! Ha ha ...long may it last ..the sun is out here today and they say its warmer than Spain !! so deckchairs out in garden again !!
Carolyn xxxx
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Hi ladies. Thanks for the warnings and advice. I have purchased some from the same site as my friend. Im sceptical about it but we will see. Sorry moderators will not put anything else on regarding this.
Apart from that im feeling great. The cape isnt having too many side effects and the zometa has not made me ill this time so im a happy girlie. I cleaned my house today properly for the first time in ages. I have been having help from other people and i cant believe how satisfying it is to clean your house lol. Lets hope the cape does its job and i can get through this cycle feeling as good as i do now. No ladies its not the oil i havent tried it yet. Lol. Sending you all a hug
Sue x