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Bone mets - please join in

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Re: Bone mets - please join in

I've been on tamoxifen and now exemestane for about 6 years now. Been on a adcal for years too as have osteopenia too. I've been told I'm staying on exemestane as it's obviously working... is it though? These mets have developed while taking it, that's what I think anyway. Thanks for your support x
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Re: Bone mets - please join in

Hello Carolyn, sorry to read you are getting your regular bone juice aches! I was hoping you would be getting used to it by now, but obviously your body has other ideas! I do hope they don't go on and on like last time! Take it as easy as you can, but still keep moving around. We don't want you to set like concrete! 

 

Hugs, and thinking of you. Barton.x

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Hello Daisyjane, such good news re your scan results! Excellent! Long may it continue.

 

Hugs. Barton.x

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Hi Debbie, so pleased that you had good results from your CT scan! Hope you are out celebrating at this very moment! Take care xx

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Hello daisy
The Adcal tablets are fine ..I have fruity ones too..find they keep me regular daily too!
Jultz and Jeanette
Can I join " the constipated duck club" ? Normally I just get creaky wrists but now the last few days I will qualify for this elite club!
As I am day five from bone juice ..probably those helping it along too!! Find my bum sticks out more when walking ..maybe I can balance a glass on it like Kim karadasha!
Anyway good morning ladies ..Sun is shining and hopefully you are all well.
Hugs xxx
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Re: Bone mets - please join in

Good morning ladies....just wanted to let you know that I went for my first three monthly CT scan and review last week and got the positive news that my bone mets are stable.  This was the news I was so hoping for and I just pray that it continues.  My calcium levels (which apparently were normal to start with!) had dropped slightly, obviously due to the Ibandronic acid (bisphosphonates) so I have been prescribed Ad Cal D3 which are OK as chewable and fruity flavour.  Just have to remember to take it at least four hours after my Ibandronic acid and two hours after eating spinach, etc.  Anybody else on them?  I had a feeling that my levels had dropped as I had a tingling tongue and quite a few aches but you never know what to attribute them to do we?  Anyway I thank god for giving me some positive news at the hospital and I am sending out positive vibes and best wishes to all of you today.  Debbie xx

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Re: Bone mets - please join in

Hi hollymeg,

I  too questioned if 'just hormonal' treatment was enough/right for bone mets but that was six years ago and I'm still stable on Letrozole, so yes it's pretty satandard treatment and can work well for a good time Smiley Very Happy Have they moved you on to a different hormone?

 

I'm on a different bone juice to you, but the risk of ONJ (osteonocrosis of the jaw) is the same. Whilst it is a possibility to get jaw problems the benefits of treatment (as far as I'm concerned) outway the risks, be careful with your oral health, see your dentist regularly and try to avoid having invasive treatment like tooth extractions.

 

Hope you feel a little less worried. Please ask anything you want, there are no stupid questions, we will do our best to answer xx

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Re: Bone mets - please join in

Hello hollymeg
Welcome again and found the best thread for bone Mets as its one of the busiest on the website and means you will get plenty of support from ladies that have no much knowledge .
Yes I was dx with bone Mets last October 2015 ( hips, femur, spine and pelvis) and hormonal treatments like letrozole are the normal first line treatment ...some ladies stay stable on them for many years but I think once it moves to liver lungs etc etc ..then you have to do the big guns chemo stuff.
The denosumab injections ( bone juice !) Are monthly to strengthen the bones and prevent fractures . Also you will b taking Adcal calcium tablets I expect ( mine are tutti fruity flavour and rather nice)
You will b scanned regularly to make sure everything is stable etc.
It's scary and we all hope for the magic bullet to be developed soon but in the meantime we have to trust our oncologists to prescribe the right treatment plan.
Once again welcome to the metsers family.
Hugs xxx
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Re: Bone mets - please join in

Hi there, please may I join in. Thanks for the invite Carolyn. I've been diagnosed with mets in my rib near my mx site. Can I ask others if staying on your hormone tablets and having 4 weekly dam??? Injections is normal course of treatment for just bone mets? Sorry don't know the spellings. I was originally diagnosed back in 2009. I'm worried about the jaw rot side effect most. How have you all coped with it? Thanks in advance for any advice you can share x

@finty wrote:

I was dx with a bone met at original dx in Oct 09. Recently I have been shamelessly picking the brains of other ladies with bone mets wherever I find them, and have found the process very helpful and often encouraging. It has enabled me to be less panicked about my prognosis, and given me a much better understanding of my condition. I now have a whole new set of questions to ask at my next consult - bet my onc can't wait!

I know I would find it very useful to have a designated thread where experiences can be shared, and advice sought - so if you agree and also have bone mets perhaps you could check in here and we could get the process started. I know it's a bit quiet at the moment, with many away on holiday - but here goes .....

finty x


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Re: Bone mets - please join in

Glad u will b chasing. Cyprus is lovely and hopefully you will get it all sorted by then.
I decided that with grandson here and eating out more ...to limit my choc but if you insist I will break into a family bar of cadburys. .would b a shame to let the side down.
Eaten so many Magnums this year too ..bit fed up with them now.
Gosh I feel a right heffer lately ....Will b stir frys and smoothies as from September when grandson goes home.
Hugs xx
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Re: Bone mets - please join in

Hi Carolyn, they keep coming and going! Don't worry I will be chasing things up but I know my onc doesn't work on Mondays so don't expect to hear anything til Tuesday. We go to Cyprus on the 10th September so I'm hoping to have had it sorted by then! 

Hey why are you resisting chocolate my fellow choco-ohlic?? I have had a magnum ice cream today I will shortly be having my weekly fix of Diary Milk!! Come Mrs don't let the side down!😆

Hugs Janette xxxx 

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Re: Bone mets - please join in

Jeanette
How are the headaches ? Any better if not chase the bcn again tomorrow.
It's difficult but we don't always want to tell our family things and tend to bottle it all up.
First day today haven't had any chocolate ..think I have the shakes ? Need to attend chocs anonymous " my name is Carolyn and I need choc"
Cut my coffee to one a day too ..phew this is just not on ....
Hugs everyone xxx
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Re: Bone mets - please join in

Thank you ladies, hopefully I'm worrying about nothing!
Hugs Janette xxx
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Re: Bone mets - please join in

Hi Janette

So sorry you are going through this worrying time but if headaches are bad they need to be checked out I agree with what others have said and I do hope you get the right kind of help. We are all here for you wishing you get some speedy results and peace of mind.

Much love and ((((hugs))))  xxx

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Re: Bone mets - please join in

Hello Janette, sorry to read you are getting such headaches. I can only echo what everyonecelse has said - see your Onc if you can, at least to settle your mind. As the others have said, there can be lots of other reasons for headaches - stress not the least of them!

 

Hugs, and thinking of you. Barton.x

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Re: Bone mets - please join in

Hi Janette, sorry you are having a bad time. You have done exactly the right thing contacting the nurse. however , our drugs have loads of SE and the headaches could be just a nasty Se. Thinking of you , Hugs M xx
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Re: Bone mets - please join in

Morning ladies.

Carolyn yes your right, this forum is brilliant, the support, advice and understanding we all give to each other when needed is priceless! It's wonderful to be able to off load any worries here without having to worry family and friends. I haven't told hubby that I have contacted my bcn about these headaches, he is so supportive and I don't know what I would have done without him these last few years since my dx so hate to worry him... (hopefully unnecessarily) 

Sending all my cyber buddies huge hugs Janette xxxxxxx 

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Re: Bone mets - please join in

I had a CT on my head to begin with but since then it has been MRI scans.Went through a period of feeling dizzy, nauseous and even confused but the MRI scans have shown the tumour in my head as stable so I put the symptoms down to side effects or lack of sleep. Once they started they got worse probably because i was anxious

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Don't I know it carolyn I've had five fillings a crown and one taken out its crazy x x x
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Jultz.
When I had chemo ( 2004) as soon as I finished spent nearly a year going dentist for fillings and extractions ..it's plays havoc with teeth ...
Xxx
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Sharon hope your doing well ❤❤
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Thanks Sharon I will try those tablets for joints x x
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Re: Bone mets - please join in

Hi jannette I've had a headache for a few days and things have been crossing my mind I even woke up at four this morning when I got up my face was swollen and my lip I totally panicked couldn't get an appointment at the doctors so went to the dentist I have an infection in my tooth but my tooth hadn't even been that bad so it could be anything ❤❤❤
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Re: Bone mets - please join in

Jeanette
That's positive and hopefully you will be able to put your mind at rest .
What a lovely site this is ......when one of us bleeds ..we all do .
We're happy for good scans results and sad when one of our ladies has a " wobble" .
Just had a nap ( unusual for me) but its so hot ...had my bar of orange aero so think I had better pop into the cyber cafe where there are no calories to worry about.
Hugs xxx
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Re: Bone mets - please join in

Thanks ladies, bcn has rang and I have explained things,  she is going to email my onc and get back to me once she has replied. 

Hugs Janette xxxx 

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Re: Bone mets - please join in

I  agree with the others. The headaches could be anything, maybe you weren't hydrated enough, maybe you're gettig some form of migraine, possibly you are sleeping in a position that puts a strain on the neck and causes headaches .......The important thing is that if it is worrying you you need to speak to your team and get your mind put at rest. Hope the BCN gets back to you and you can start to feel a little less worried. A big hug coming your way xx

 

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Re: Bone mets - please join in

Well done Jannette, just thought, sometimes a neck massage from a partner or friend can help tackle a headache... lots of love...we are all here for you. Hopefully the bcn will get back to you....but leave it for a little then try again.

 

moijanxx

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Re: Bone mets - please join in

 Jeanette, I agree, go get it checked out. Worrying can make your headache worse and upset your stomach. You will just feel worse without answers. FF

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Re: Bone mets - please join in

Thank you ladies for your advice, Carolyn I'm love, just been keeping busy and trying to ignore this headache in the hope it will bog off!  I've rang my bcn but she was out of the office so waiting on a call back.

Hugs xxxx 

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Jeanette
You've gone quiet ...you are probably sat at home , worrying and staring at Jeremy Kyle on the tv but not watching it !!
Rant and rave but keep posting here as we cyber pals can't help you if u do the silent thing.
Hugs xxx
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Re: Bone mets - please join in

Hi Janette, if you are worried ask for a scan, nothing else will put you mind at rest!

It sounds very familiar! I had a brain MRI on Wednesday! I knew two people who had brain mets and it was playing on my mind,'it's the only bit they don't scan', and I have a lots of headache so told onc and she arranged one, she wasn't worried but did it so I'll stop worrying, very understanding. I hate MRI as slightly claustrophobic....

Waiting for results, see her Monday so keeping very busy this weekend......

Andrea xxx
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Re: Bone mets - please join in

Hi Jeannete, yes, I agree with Carolyns suggestion. I had visual changes and the eye clnic asked m onc to do an mri...which he did arrange..all was ok in the brain, so that was very reassuring. Am sure they would do one if you are really worried. Re ct, well they might, but honestly is prefer an mri!

 

if the headaches do go away, could it be some form of migraine? That can cause nausea and sickness...as can anxiety too.

 

keep us posted..hope it gets better

 

Moijanxx

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Re: Bone mets - please join in

Jeanette
I must have physcic powers ....I knew something was wrong and almost did you a pm.
Could it just b the hormone injections or letrozole causing headaches as remember you body is being starved of oestrogen now?
If you do feel worried ..ask for a mri scan and get it checked out to put your mind at rest.
The c likes to cause worry and stress as its winning then isn't it?
Sorry not much help but hugs xxxx
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Re: Bone mets - please join in

Morning ladies, hope your all keeping well, I've been a little quiet this last week or so. I've had a niggling little worry, hoping my cyber buddies can help me out?  For around 3 wk now I have been struggling with headaches, they seem to ease off for a day or so then come back with a vengeance! This week I have also been feeling sickly, so obviously my mind is playing the "omg it's brain mets card"!!! Only saw onc about 3 wks ago and markers dropped significantly and stable CT but they don't scan the brain on CT do they! 

Any info / advice please? 

Hugs Janette xxxx 

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Sharon, yes I know the medics wont discuss it. However i believe some studies have used it to see if it relieves side effects of chemo...so maybe things are changing slowly

 

Moijanx

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Re: Bone mets - please join in

Dear stresshead, I have heard of Manuka honey being used for wounds but I think its been sterilised...yes Manuka Honey is good for lots of stuff, but honey has some strong bacteria of its own that could cause problems for babies etc, so vulnerable ladies like us need to be careful. I think, if I was ?  NUtrapaenic I wouldnt take it.    I take it in herbal teas.or on toast for a comfort bite( a bit like Carolyns chocolate!) they use it in a special toothpaste too.

 

Moijanx

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Stress head iv read on here that the hospital can give cream for skin Mets..but I'm sure there's lots more you can explore.........................
Mojan..no.one will discuss cbd oil in medical profession...xxsharon
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Carolyn yes missing daughter and baby.but house much tidier 😊...and also yes iv bought them fridge freezer.microwave and lots other bits.but today I thought I will get a new carpet for their old bedroom as I decorated it last year but wfnt pay for carpet then as I know how messy babies are.so carpet coming next week.husband doesn't understand why when no.one lives in there now
But I just ordered it anyway😊..now planning sofa bed for there too
.😊 keep spending😊
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Stress head will let you know about cbd oil..although it may all change after oncologist on Tuesday..but iv had no weird side effects.iv also heard of mistletoe and iv heard of frankinsense .its taken me a year to decide yo even try This cannabis oil..i think maybe I should only introduce one thing at a Tim to make sure of side effects.but my mind is open to it all....my last chemo was made out of trees..and the chemo capecitabine I had was made from capers/peppers.so I will see what oncologist has up her sleeve on Tuesday
Take care Sharon.x
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Jultz try seven seas glaucosamine jointcare tablets they are harmless and helped me when o was on letrozole
..still take them now
Take care sharonx

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Re: Bone mets - please join in

Hi janette yeah I'm like a constipated duck too haha I like that I'm going to think of that when I stand up lol its a nightmare even getting out the car as you say just takes a few mins but it's a pain julie ❤❤
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Hi julzd, since the started on letrozole in October last year I really do suffer from aches and pains. Like you if iv been lay or sitting for ant period of time I walk like a constipated duck! It takes me a few minutes to straighten up, even the soles of my feet hurt to walk on. 

Hugs Janette xxxx 

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Hi I had scan results for osteoporosis bone scan they said my bones were fine I was a bit stressed as I've been all aches and pains but the nurse said this can be caused by letrazole or zoladex I'm like an old woman when I've been sitting a while or when I first get up on a morning does this wear off or will it be like this all the time ? 💖💖
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Stress head
I think if you want to go the alternative route you need to see a specialist as some vitamins work against others and its knowing what is what.
Manuka honey is safe though ...I posted before but my son's dog had cancer in his leg and had a huge lump/ tissue cut out but the wound just wouldn't heal with all the lotions and potions ..as a last resort vet prescribed the honey ...well 3 days and it repaired and within a week ..he was running around as good as new.
I know it sounds funny comparing you to the dog ..ha ha but its worth a try and its on special offer in Sainsburys now !!
I have pm you. Did u receive it ?
Xxx
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Sharon, i too am interested in cannabis oil as i dont think i have many options left. No one in the medical circle seems to want to discuss it and i have no idea how to source it. I am going to ask my homeopathist again when i see her. Please let s know how you get on with it.

I have also heard mistletoe mentioned...anyone any knowledge?

I too have heard of different oils but it seems you have to be extra careful what you use...i have skin mets and am sure i read somwhere that something could be applied topically. If anyone has any info i'd be really grateful

I know mankuka honey is supposed to be good fro skin conditions, ulcers etc bt dont know of anyone who has used it...again if anyone has any info i'd love to hear it.

Best wishes. xx

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Hiya ladies
How r u all today? ☺☺
Yes you guessed I'm home all day today as have been out and about all week ( spending money too) so hubby is threatening to surgically remove the phone from my hands as I have been tapping away all morning ..battery will go flat soon so you will be free of me for a few hours .
Just munching a bar of cadburys choc with Turkish delight ...yum ..bigger knickers for me.
Xxx
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Re: Bone mets - please join in

Hi Sharon

 

some of my bone mests did shrink a little some time ago, I am never sure if its the Zometa or the chemo tho.

i am totally on your page about wishing tumours would shrink!  I often think about trying extra little things like oils...I read that just inhaling certain oils can be beneficial...trouble is, theres little research to back these things up...hopefully soon there will be

 

our hospital has a drug information line sttached to the pharmacy, it might be helpful for you to see if yours has one..they always warn us about taking extra drugs which could conflict with treatment or reduce its effectiveness.....i also find that the Pharmacist in Boots is pretty good just to check over the counter stuff with.

i find myself contantly checking if I want to try something new.

 

looking forward to hearing how things go for you, its so nice to be able to share news and ideas with all the lovely ladies on here,

Moijanx

 

 

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Sharon
I think we are all willing the cb oil to help you as you have been through so much chemo and your body must b fighting all the effects.
I did Google cb oil but read some hocus pocus stuff as well as good reviews.
Anyway , how is your daughter settling in to her new flat ? Bet bank of mum is still splashing out !!
Hugs xxc
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Carolyn iv had about eighteen demusamab and they seem to work well...as for chemos the last lot only slightly reduced my liver Mets and now four months later theyv grown again😁...im doing this cbd oil because I'm desperate.i dont expect my advanced cancer to suddenly go away although that would be news wouldn't it.....anyway find put Tuesday what oncologist wants next but I'm not so believing in these cruel treatments at the moment....anyway take care .sharon.xx