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Bone mets - please join in

Carolyn52
Member

Re: Bone mets - please join in

I always have my daily fix of chocolate ..never sugary sweets though.
Enjoy xxx
scratch
Member

Re: Bone mets - please join in

Hi all had my oncology appt today and she was happy with me so remain on demusamab and examastane for now.got ct end July and results in August.fingers crossed ..xx
truffle_shuff
Member

Re: Bone mets - please join in

Thank you Carolyn, Im just being a bit Wonkey Donkey today xx sure things will improve, maybe chocolate xx

Carolyn52
Member

Re: Bone mets - please join in

Hiya truffle shuffle
Not sure if they actually help with pain ...they are supposed to stop oestrogen feeding the cancer.
I have denosumab injections for my bones and they are supposed to help with bone pain..not sure really if it does or doesn't to be honest ..but a lot of ladies here say they help.
I think nerve pain is going to be tricky and maybe physio is going to be the way forward. The rads will help but it does take a few weeks to kick in.
Hope that life gets a bit easier to manage.
Xxx
truffle_shuff
Member

Re: Bone mets - please join in

  Hi, Can I just ask   do these treatments  ease the mets pain  , admittedly  I have only had one shot of fulvesterent hormone, with one zometa  , but I also have just finished   radio t to hip  and axilla .  my pain is mainly in hand from nerve  in axilla  , which I take 27 tablets a day  !!!!!!  oh and oromorph at night,   and my hip stops me walking any great lenth.

 

 I am In clinic on friday for more injections  , but I dont want to ask  , my faith  and positivity  is in my boots   today.  I know my pain is not great  compared to some  , and this scares me with what I have to come.  

 

 I was intending to go back to work  , cant see that on the cards

 

 

sorry for my negativity ,  im giving up at first post , which isnt me

 

take care xxx 

Carolyn52
Member

Re: Bone mets - please join in

Hiya moijan
Firstly welcome to our family ..this is a busy thread as we do try to be a bit easy going with a bit of humour and our daily sagas ...we are all in the same boat here with whatever our ailments ! Please look around the threads and join our private forum for book club, gardening and lots of other non "c" topics !!
I'm sorry you have to do iv chemo again ..it's savage and I stillhope my little letrozole pill will hold me a bit stable for a bit longer .. rather than the big gun stuff !!
Our motto is "take a day at a time" but shop as if there is no tomorrow !!!!
Enjoy our support here and keep posting rather than lurking !!!
Hugs xx💟💟💟
Moijan
Member

Re: Bone mets - please join in

Hi Carolyn,

 

You sound very upbeat. And it sounds as if things are improving for you?

i am usually pretty positive, but finding it harder to be, just now. I had mastec in 2001, then letrozole, until advised I had been on it long enough.. Then 2 years after that,liver and spine mets Am currently on the gravy train of, 'this seems to be failing,now we suggest  The next one should be....

 

Have a lovely oncologist, but really 'dont want' to be starting iv again this thursday!!

 

One thing I will say to everyone, if Letrozole is working, dont stop it, when I tried it again, it failed, so if it works...stay on it.

 

hugs,

 

 

Moijan

 

 

Carolyn52
Member

Re: Bone mets - please join in

Hiya Jeanette
Good to hear from you ..sorry about your aches and pains though .I find sitting for long time the same ..pressure pain but seem to get comfy in bed most nights with my hot water bottle !
Just trying to hold off using painkillers at moment !!
I've been trying to not use the crutch walking around the house this last few days as my bones are beginning to recover with the bone juice but I'm pushing my luck a bit! I've switched to a ordinary walking stick ..yes u guessed its sparkly and looks quite good compared to the nhs crutch!! Might get a couple more in other colours. I think Jeanette although it effects your street cred ..u might find it supports yr back and hip when walking a bit ..so bite the bullet and try. If u r uncomfy sat down ..try one of those blow up rings they give u when u have stitches after having a baby !! takes weight off the little c tikes a bit.
Hugs xxxx
rosie53
Member

Re: Bone mets - please join in

Morning ladies, yes it's pouring with rain here too!!!.....yet another wash out summer!

I'm still struggling with aches and pains in my hip and back 😟 it's worse when I sit for periods of time or whilst in bed, my mets don't seem too happy with any pressure on them at the moment so really struggling to get comfortable. Coping ok with paracetamol and naproxen though......don't like taking the hard stuff! Carolyn you do so well not needing any pain relief at all! 

Well just made a big pan of my "healthy soup" loads of veg chucked in a pan, my hubby calls it my "windy" soup....wonder why!😀

Hugs Janette xxxx 

Carolyn52
Member

Re: Bone mets - please join in

Good morning everyone
Hope you are all ok and enjoying ....the lovely rain ..a dingy and flippers is needed here ..ugh.
Well another Sunday off from cooking ..we went out for lunch so very nice.
Going to have to do a Sun dance for next weekend ..got grandchildren and outdoor things planned.
Hugs ☺☺☺
redridinghood
Member

Re: Bone mets - please join in

Kathryn,

 

Welcome to the bone thread........if 'welcome' is the right word. Nobody wants to be in our position, but here people can support one another. You wonder if this is the forum for you........yes, it certainly is. Others have come here worried about their mums! These forums are for anybody, patient or family, wanting information and/or support. Already Carolyn has said some very sensible things. I am sure your mum will be given bone strengtheners. I have a monthly denosumab injection. She could have a hip replacement at her age.......my dear dad has a full knee replacement at 88 and lived to 97. But do talk to your mum's onc and her breast care nurses. They can be more specific. I learnt to talk up for both my little parents in their later years. It can be hard, but you get better at it!

 

Anyway, welcome, and do ask any questions at all. Do browse the threads, and don't forget that you can ring the very informed nurses on the BCC telephone number. They are kind and patient and very knowledgeable. You can ask them anything. I talked to them a lot at the beginning. Take care, and give all our love to your mum,

 

mo    x

Carolyn52
Member

Re: Bone mets - please join in

Hiya Kathryn
Welcome to our little family. Sorry about your mum but she will get excellent treatment. They might decide to put a pin in the femur to support the hip damage. I had this done last November and it is quite a easily tolerated op. I had a friend ..got dx with breast cancer at 70 ..but because of heart problems ..it was risky for surgery ..she was prescribed arimidex daily and it controlled everything until she died age 88 of heart failure !!
Cancer doesn't always spread that much as you get older and so it could be easily controlled with the correct treatment plan. But I'm not a doctor to be able to say for definate. Talk to oncologist and discuss options . In the meantime basics like cod liver oil and glucosamine daily do help .
Hugs xxx
KathrynK
Member

Re: Bone mets - please join in

Hi, I hope it is ok for me to join you and everyone else. I am not suffering myself but my Mum is and she does not have access to the Internet so I do a lot of things on her behalf. I worry that although as a family we do whatever we can to support her she feels very alone sometimes. My Dad died in 2009. Mum had breast cancer 10 years ago and had a single mastectomy. She was given the all clear after 5 years and medication was stopped - as we now know, 5 years is not long enough. Last year after some really bad back pain she ended up in hospital with a disintegrated vertebrae and the discovery that she has extensive spinal bone mets. We thought she would never walk again but she is a fighter and is back home and is as independent as possible. Maybe I should mention that she is 83 (almost 84) but has always been very active and people cannot believe how old she is. I sometimes feel I have to remind health professionals that there is a lot of life in her yet and they need to consider her treatment with that in mind! She has recently had severe hip pain and after much complaining is being taken seriously. I wondered if anyone has had a hip replacement due to bone mets and what the outcome has been because obviously we want to go into any decision with as much information as possible. I have read through a lot of the posts and feel that I understand as much as I can do as a relative but also that I can share these with my Mum so she will see that she is not alone. I think you are all amazingly strong people. I recently completed a pink ribbon walk and met some great people who have inspired me to do more. Sorry this is a very long post and I understand if you all feel that this is not the forum for me but I hope I can join you. Kathryn

Chocolates
Member

Re: Bone mets - please join in

Hi ladies, just catching up.  Carolyn, really pleased abut your good news re stable.  Always so good to hear.  You enjoy your chocolate.  Not many things we get to enjoy is there!!

 

sharon, glad you managed a good break.  Always refreshing to get away.

 

Hope everyone else is doing ok.  Good luck to everyone who has scans/results/treatments this week.

 

huge hugs

 

hxxxx

Carolyn52
Member

Re: Bone mets - please join in

I only drink a very occasional g and t ..but have a small glass of slimline tonic in the evening and pretend its a proper drink!! 🍷 I read somewhere on the threads here ..it helps pain for bone Mets and sleep. Don't know whether it does really but I enjoy it rather than tea or coffee in the evening.
Xxxx
scratch
Member

Re: Bone mets - please join in

Yes caroline hubby likes a beer.i dont drink much I can sit in wetherspoons with coffee and read the newspaper..but iv had about two alcoholic drinks a day while on hols..back to none tomorrow as frightened of my liver Mets.but have enjoyed this break .no cooking shopping or stress......take care Sharon.x
Carolyn52
Member

Re: Bone mets - please join in

Sharon.
Sounds like you have been doing a pub crawl not a holiday !!
AAGH ..seagulls love holiday makers ..especially if u have an Ice cream or pasty in your hands!!
Just fancy a g and t myself ..maybe later.
Xxx🍷🍷🍷
scratch
Member

Re: Bone mets - please join in

Oh Carolyn ended up in the wetherspoons at Paignton and a place called harbour inn near the Quay....xx.sharonx
scratch
Member

Re: Bone mets - please join in

Hi yes had lovely week Carolyn..beautiful area .very hilly on the bad bones but iv coped ok...we went to Paignton a few days ago.it was lovely but it rained..and a seagull pooped on my hair got back now from Teignmouth ..sunny today so lovely...sitting on hotel balcony with a bacardi.take care sharonx
Carolyn52
Member

Re: Bone mets - please join in

Just thinking as its your last day tomorrow , you could get on the train the other direction to paignton ..it's nine minutes by train and another seaside place with gift shops and cafes. You might like that too.
Pity your week has gone so fast as it would have been nice to meet you for coffee but maybe next time u r here in Devon.
Hugs xxx
Carolyn52
Member

Re: Bone mets - please join in

Oh Sharon
The wetherspoons in teignmouth is a nice one ..went for lunch recently there. It's fairly new on three floors which is nice and yes good cheap food and near to the station . I'm glad u have enjoyed your holiday here and a break before reality of oncologist and things again next week. Hopefully you have been well enough to cope with loads of walking and sightseeing ...it tiring ...xxxx😀😀😀😀
scratch
Member

Re: Bone mets - please join in

Hi Carolyn yes we did Dawlish this morning .this afternoon were in Teignmouth.theres a festival thing on here.both very nice....in wetherspoons in Teignmouth now for drink..everywhere has wetherspoons..i have two in my own town..cheap and cheerful.weather nice today only got one more day...but had nice week..missing my family now so don't mind home.and got oncologist Tuesday just to bring me back to reality.❤❤ sharonx
Carolyn52
Member

Re: Bone mets - please join in

Hiya Sharon
Oh yes dawlish and teignmouth ...know them very well ..hope u enjoyed them? Lots of nice teashops in dawlish I bet you sampled and the park with the swans etc. Teignmouth is all pier and charity shops !! Dawlish Warren is a few miles up from them ...we used to have a beach hut when the kids were small ..couldn't afford holidays in those days!!
Enjoy the rest of your break ...weather is going to get better.
Xxxxx🌞🌞🌞🌞🌞🌞
scratch
Member

Re: Bone mets - please join in

Carolyn weather bit better last two days..have you been to tynmouth or dawlish .sharonx
Carolyn52
Member

Re: Bone mets - please join in

Hiya ladies everywhere
Hope you are all ok and enjoying our lovely Sumner weather ..it's a bit hit and miss here in Devon but I'm sure it will all get better this weekend so we can all enjoy some Sun !
Hugs xxx❤❤❤❤
julzd
Member

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I know none of you are watching BB but I love it I've got a sad life so going to watch it now take care everyone ❤❤ x x
julzd
Member

Re: Bone mets - please join in

Hi janette, I bet that's what it is I feel so stiff when I first get up after sitting or lying down it goes once I'm up and about. I can't post photos from my phone either il have to get an ipad x x
Carolyn52
Member

Re: Bone mets - please join in

Hiya jultz ..yes its probably the letrozole and hormone inj causing a bit of fluid retention as they r both stopping natural things happening. Maybe try eating celery and iceberg lettuce as they make u wee more !!
I deserve to put on weight as I eat too much cake and chocolate and can't exercise much to work it off !!
Well Jeanette ...how disappointing not to see your cake and put me to shame ...I can cook good roasts and basics but hopeless with cake .my kitchen doesn't love me anymore as I avoid it as much as possible these days .
Football is getting on my nerves already .
Xxxx
rosie53
Member

Re: Bone mets - please join in

Hi Julzd, just wanted to say that since I started on letrozole last year my fingers have swollen, I questioned this with my onc, because they are not only swollen but feel stiff like I have arthritis, she told me that letrozole effects the small bones causing them to swell and ache. Have you also noticed your feet hurt too? When I get out of bed in the night for the loo I walk like a constipated duck after being lay down for a few hours! 😁

Hi Carolyn, I forgot to take pics with my tablet I used my phone and I can't post pics on the site off my phone for some reason!!......It was lovely Though 🍰🍰🍰

Hugs Janette xxxx 

 

Barton
Member

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No, that sounds good, Carolyn. Even better with Maltesers, though!

 

Hugs. Barton.x

julzd
Member

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Sharon I thought that about the chocolate lol x x
scratch
Member

Re: Bone mets - please join in

Carolyn..your good results prove chocolate is not too bad for us.haha..😈 xx..bet you will be happy when you can drive again..take care Sharon..p.s I left hubby in pub today watching footy and did my little swim...xx
scratch
Member

Re: Bone mets - please join in

Hi jultz prob bit fluid.my fingers change with meds..when we were on docetaxol my ring fell off..but iv had the puffy bit before.hows your hair coming...my eyelashes have shot back thick and black again bit shorter than used to be but mayb still growing ... Iv got oncologist appt Tuesday so I'm just enjoying my few days here..nice to get away..takecare Sharon.x
julzd
Member

Re: Bone mets - please join in

Carolyn sorry must of read it wrong well I hope they say it's ok and you get back on the road soon. I think with starting zoladex and letrazole my body must be adjusting I can't lose the weight I think I'm retaining fluid because my fingers seem a bit fat dunno if it's that or the heat or if I've put weight on my fingers I struggle to get my rings on x x
Carolyn52
Member

Re: Bone mets - please join in

Hiya ladies.
Sharon ..glad u r enjoying yr holiday and a swim in an empty pool. Very nice .
Jultz
Can't think why u arnt loosing weight at slimming world ? It's usually a good loss diet. Sure yr not sneaking kfc or something ?
I haven't got the ok to drive yet ..waiting for call from orthopaedic doctor ..something to do with insurance being valid with a wonky leg!
Jeanette
Where's the photo of the cake you were going to bake ? Did it end up like mine usually do ? A frisbee ...which would take about six to make it a decent height !!
Hello to everyone joining us tonight .
Xx😃😃😃
julzd
Member

Re: Bone mets - please join in

Sharon well done proud of you! Once you do it once you will go again. I still haven't been joined slimming world three weeks ago I've actually gained 3 pounds lol next week I'm determined I'm going swimming enjoy the rest of your holidays. Carolyn I forgot to congratulate you on being able to drive again that's fab. Skippy glad your feeling ok hopefully you won't get many side effects from chemo x x x
Skippy
Member

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Hi julzd I'm not to bad thanks x
scratch
Member

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Jultz iv done my swim you owe me a drink😊.. Actually went in hotel pool just now.i was only person in there..it was warm and peaceful..didn't overdo it as arms started to ache as havnt been for long time..take care Sharon.xx
Carolyn52
Member

Re: Bone mets - please join in

Omg ..I use two Bananas , some low fat porridge oats , cinnamon and water ? Is that really bad ?
In that case ...just going to open my big bag of maltesars then ?? Maybe if I put them in the smoothy machine ..they will become healthy!!
🍦🍦🍦🍦🍎
Barton
Member

Re: Bone mets - please join in

I would be careful with the smoothies, Carolyn - apparently they can be fattening too! I'm sure it will be a healthier fat, though Smiley Very Happy

 

Hugs. Barton.x

Carolyn52
Member

Re: Bone mets - please join in

Well ladies ..of all the slimming clubs I have joined over the years ..the hospital club is the only one that is happy when you put on weight!! I've put on five pounds in three months ..so I am now officially a Heffer.
More smoothys and less chocolate/ cake!! 🐷🐖🐖🐖
nicky08
Community Champion

Re: Bone mets - please join in

Great news Carolyn, a huge sigh of relief I know! Glad the chocolate buttons helped you celebrate 😊 I was on anastrozole for nearly 5 years keeping my bone mets stable so these hormone therapies do work, I just think as it's such a small tablet and here's no needles or hospital visit is involved you can be worried you're not getting the right treatment! But when they work - they work!

Enjoy the feeling and get out there driving as soon as you can, it will make such a difference to get some, if not all, your freedom back.

Nicky x

Carolyn52
Member

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Oh jultz
You are so brave ...but give it a bit longer to c if it works.
Definately not for me ..ha ha
Xxc💙💙💙
julzd
Member

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Hi ladies just finished work had the accupuncture this afternoon it was strange seven needles in each ear then had to sit for half an hour I must of looked a right freak haha some of the needles actually hurt so hope it works mind I had a hot flushes in the co op before so not looking good up to now lol x x
Carolyn52
Member

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Thanks Helen.
How r u feeling what with the wedding coming up soon ? Is your hair managing to stay put with the cold capping ?
Xxx
HelenAquarius
Member

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YIPPEEEEEEEEEEE! Great to hear about your results Carolyn. Phew.

 

Sending cyber hugs and flowers :-)))

Helen xxx

Carolyn52
Member

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Thank you ladies.
I've consumed a family bag of chocolate buttons this afternoon in celebration.🐷🐷🐷xxx
Stillhere
Member

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Just read your post, Carolyn......YAY!!!!😄 😄 so pleased for you. Have a good long sleep...😴 after lots of chocolate 😇xx

rosie53
Member

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Yeyyyy!!!!! Fab news Carolyn, I knew you would be ok, looks like that little pill (letrozole) is our new best friend 😆. I'm back for second scan next month since starting on them last October (I think we started on them at the same time??) Hope you plan on celebrating this evening? Really pleased for you hun!!
Hugs Janette xxx
scratch
Member

Re: Bone mets - please join in

Well done Carolyn..❤ xsharon