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Bone mets - please join in

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Re: Bone mets - please join in

Really pleased to hear the news. Do something really nice to celebrate
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Hi Linda

So pleased to hear your good news!

Love to all   Bon xxx

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Hi ladies, welcome Anne. When I was diagnosed with bone mets it was a long and frustrating wait as each scan was inconclusive bone mets/site if old injury so we went for CT scan, followed by bone scan, regular MRI and then a more powerful 1 hour MRI which confirmed spine, sacrum and public bone.

I've been on zometa, zoladex, letrazol and Ibrance fir 3 months and just had my first MRI to see if it's working.

GOOD NEWS! ! Tumours are shrinking and zometa is doing its job helping to rebuild my vertebra which onc thought might need urgucal stabilisation.
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Way to go Lyndyloo!

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Linda

Congratulations on being a stable Mabel ..good news and long may Cape do its magic to keep the little blighters under control!!

Hugs 👍👍
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Hi everyone

Got some good news to share rang hospital today regarding CT scans everything stable. Mind it took 3 weeks to get though.

Linda

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Hi Ramade

So sorry to hear you are certainly suffering at the moment. Chemo is awful.

I have fingers crossed it works really well and gets rid of the intruders.

Linda

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Ramade, You're halfway! Yahoo! Sorry it is rough on you. It is so strange how the drugs effect each of us! 

 

We had some snow again yesterday evening. No accumulation. It either rains or snows! Tomorrow it kid supposed to get warmer and be beautiful through the weekend. Can't wait!

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Hello Ramade
Sorry u are struggling with the chemo. .it can really knock u for six but hopefully it's getting rid of the invaders that have gatecrashed your body.

I had primary chemo 2004 but was younger and fitter so managed it ok but I think I would struggle now more !

Well hear we go ..doing the sun dance especially for you. .. Fed up with rain ..think I'm growing Webbed feet !!!

Hugs 🌞🌞🌞🌞🌞
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yes Carolyn please do your sun dance.

 

 Anne welcome to our group. They seem to manage bone mets pretty well these days. Mine are extensive. i also have soft tissue spread which they are hitting hard with chemo. 2 down 4 to go. Bald and feeling pretty rough, hope it works

 love and hugs

ramade xx

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Thanks Ramade! I wish it had worked better for you! Hope you are feeling fairly well and maybe get some nice weather to get out and enjoy. When the weather breaks I'm going to push myself into a walking routine. I need it! FF

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Thinking of you Anne!

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Hello again Anne, thankfully my bone mets are under control and have been since my first scan after diagnosis, over two years ago now. I went onto Letrozole and Denosumab but also made some lifestyle changes, we are all different in how we approach and deal with our diagnosis, I would say make your own decisions on what feels right for you, Kxx

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Hi Anne, PLEASE don’t google unless you are going to use sites like Macmillan or cancer research!!
Most of the others are outdated and not realistic of now, plus everyone who has cancer is different, no two are the same it’s individual!
I know it’s a horrible stressful time but it does get easier especially once you’re treatment plan is in place.
Take care we are all holding your hand,
Hugs Janette xx
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Great news ff, so pleased for you, love and hugs

ramade xx

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Hi Anne

 

Sorry that you are having to join us but you have come to the right place. Googling is not good but there are sites that give you sound advice - this one, MacMillan, Cancer Research UK and Inspire are some of them. Everyone is different and the types of cancer they have are different so statisics aren't a lot of use for you as an individual except for the fact that treatments and survival times are improving all the time.

 

Waiting for results is one of the most difficult things we have to do and they don't  always come as promptly as we might like. Scans can give a lot of information but it's usually a biopsy that gives the definative diagnosis and there are only certain bones where that can be done.

 

Hoping you get some firm results and a treatment plan soon and then you will have something to focus on and adjust your life to. There are so many encouraging and inspiring people and their stories on this forum that can give you hope.

 

Bon x

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Hi Anne

At the right side of the box that you type your text in is a box to click about email alerts. You may want to turn it off eventually as I think it will alert you every time someone adds any post on that thread rather than ones specifically meant for you. I haven’t  used it in all my years on here so can’t speak from experience but I’m sure that’s the way it works.

Nicky x

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Hi Anne
The waiting is incredibly hard for everyone and you're reaction is perfectly normal. Probably good to try not to Google as it can be scary and misleading! I'm amazed at the vast array of treatments and the quality of life they give. It's a continual process of adjustment but you will find ways to relax and get through. Sounds like you've a great hubby supporting you
Hugs Phoebe xx
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Thank you! I will try to avoid google! By the way does anyone know how to turn on email alerts?
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Hi Anne

It is always an anxious time waiting for scans, and even more for the results! Obviously we all hope it’s not mets and turns out to be other aches and pains but if you do get a diagnosis of bone mets you have come to the right place for support, advice and general sharing of our experiences. We are not experts but are living with this type of condition (some, like me for many years, in my case 10 plus) and therefore understand completely what it is like. If it does turn out to be bone mets you will not be alone either with that diagnosis or the fact that you have been diagnosed with primary and secondary at the same time, it’s not as unusual as you think. Oh, and the main advice is Do not Google! Statistics and information is so out of date, I don’t think any survival stats have been updated since my diagnosis of bone mets 10 years ago. Treatments have moved on from when those figures were even put on the internet and survival rates for SBC were never actually logged in the UK until a few years back.

Good luck 

Nicky x

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Thank you. I am panicking and spending hours on google. My husband is very gentle and patient but I think he’s getting frustrated by my endless googling of “survival rates for breast cancer in the bone.” I need to get a grip of my thoughts. This forum is great! So sensible and thoughtful
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Thank you. The waiting is hard and it’s awful to feel that you are causing so much worry for all your family and friends. I hope your bone mets are under control. Best wishes
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Hello Anne, sorry you’re having such an anxious time waiting for your results. I had a similar experience when I was diagnosed, biopsy and scans confirmed lymph nodes were involved but there was some confusion about areas in my upper spine, even the Oncologist wasn’t convinced by the Radiologists report. I see my Onc at an outreach clinic so she took the scans to the hospital she works at to get a second Radiologist report there. Sadly the mets were confirmed but I had been getting a lot of pain in that area which had been put down to the whiplash injury I had after someone had gone into the back of my car many years ago, I believe it’s typical for mets to go to an area of weakness. Hopefully as your pain has subsided it will be a different outcome for you, I just wanted to reassure you that every effort was made to make sure they got my diagnosis right. Please let us know how you get on, Kxx

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Hello Anne
Sorry you are still in limbo with it all ..the trouble is the scans pick up every little blemish and sometimes it's not mets but old injuries. .on the bone scans they show areas of "possible mets" sometimes it could be arthritis, wear and tear etc etc so they need to be sure before they treat you.
Let us know how you get on Monday but try not to panic too much ....we are all here holding your hand

Xxxx
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I’m so glad people are getting encouraging results. I am still waiting for treatment plan. Seeing the oncologist on Monday. The breast cancer consultant said that there was an area of concern on a bone scan and ordered a PET scan. She said there were three areas on the PET scan two spine and one pelvis but she wasn’t sure what they were. I’d had an MRI of my spine the day before and she had it on the screen but she said she couldn’t read it. Has anyone else had anything like this? She seemed pretty sure that they are bone mets and wants me to have six months of chemo. I was only diagnosed with breast cancer a month ago. Any responses gratefully received. I had a lot of pain in my back and hips a few months ago but thought I’d overdone it in the gym. No pain now. It’s so odd to think there’s something so sinsiter on my bones and no symptoms!
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Afternoon Stillhere

Good luck with your scan results. Fortunately you don't have to wait long to get them. Wonder why I have to wait at least 5 weeks to get mine. Some hospitals are much better that mine. If you don't mind me asking do you go privately?

Have a good weekend.
Linda

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Morning Funnyface

That's great news. Long may it continue to keep on working.

By that is alot of snow. The UK has had a bad weather this year but normally it is not bad. Some years we dont get any snow at all.

Have a good weekend.

Linda

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Wandered what happened to my brigitte Jones pants ? Those heavy winds earlier this week blew them across the pond to you !!

Hugs xx
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Undies were found hanging from trees too! Too big to be mine!

 

The snow forecast has gone back and forth! It will be what it will be! 

 

FF

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Funny face

Rumour has it that a very loud party was going on at yours last night to celebrate the scan results ...
Neighbours said empty bottle and party poppers were ok but the naked rude snowmen on your front lawn were over the top ..Lucky weather reports say they will melt soon !!

Hugs 🍸🍸
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Toot, Toot, Hayeswen! The good results give us all hope to hang onto! FF

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Funnyface fantastic news. I too after worrying myself got a stable result last week so fingers crossedyour treatment keeps working along with mine and all the other ladies new and old. Just thought I would add to weather conversation it has been like a beautiful spring day in London (from what I could see out of the office window)😄
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Still here, The "grandma gig" is awesome!! 

 

Thanks everyone for the support. Happy to l ast longer on this treatment! This takes me to mid July for next scan. Hoping to make it through summer without needing chemo. FF

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Hi Stillhere, what wonderful news, you're a soon-to-be stepgrandma! I've got two step-grandkids, ages 3 and 6, they are a delight, especially as I can enjoy them without feeling any responsibility whatsoever -- hey, there's none of MY genes in there! It's not my fault! Have a great time celebrating, and thanks for sharing -- the more good news we hear, the better!

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Great news, FF! Stable Mabel -- I love it! Now just you keep warm and build a lovely cozy fire.

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Toot toot funnyface, Stable Mabel that’s fantastic!! I’m hoping to stay amongst the “stable Mabel” crew, due scan results in a few weeks.
Stillhere, congrats on your forthcoming grandchild.
Sunny day here today too 🌞
Hugs Janette xx
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That's great news FF! Came out of hiding to congratulate you! Don't envy your weather though....today in Sussex a big yellow round thing appeared??? What is it??  We saw our first swallow flying back as well....could spring be here.....for a day or two.

I had my CT scan yesterday, result next Wednesday 😳😳 I've just found out I'm going to be a step granny in the autumn...we'll be celebrating this weekend as its a first so focussing on that news x

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Yay, a stable Mabel - great news FF. Now you just need to hunker down and get through the next snow storm ☃️☃️ We’re being washed away in the UK, well the South at least, but a welcome day of sun today and tomorrow, then back to clouds ☁️🌨 Presume Spring will happen sooner or later for all of us. Enjoy the good news.

Nicky x

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Well done funny face

Toot toot ...ringing the bell for you Miss Stable Madel ....🔔🔔🔔🔔

Hugs xxx
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Ladies, Thank you for the hand holding! Stable Mabel! Plus a little improvement in one lung! Toot toot!

 

Tatyana, I'm holding your hand and hoping for excellent results. Then you can toot your horn too! 

 

Lyndyloo, We do get a cold winter and I few snow storms. We don't get it as bad as some areas. We have had back to back 24 inch storms. That 4 ft was the most I remember. No need for it to happen again!   

 

Headed out to get some coal. Looks like we will still be needing the coal stove for most of the month. 

 

Hugs! FF

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hi funny face,

i wish you all the best with your scan results,it's always a worrying time but do hope it is good news for you,the weather is very very strange this year and appears to be all over the world ,so not just us ,we have a glorious sun shiny day here ,but bythe forecast back to rain etc tomorrow so very short lived spring.

all my best wishes 

reneexxx

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Thank you for the welcome. I hope your treatment is working too.
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Well FF

I tried sending you some of our spring sunshine ..sorry about the snow forecast ...
Well scan results day ..we are all holding your hand and ready to TOOT the horn for you ..

Hugs xx
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FF, hope the scan results are kind to you-- and that you don't get stuck in the snow! I'm in southern England and it's a beautiful spring day today. The daffodils are a joy.

And a big warm welcome to Anne! I only joined this thread recently after getting my secondary diagnosis, it's not something that you'd wish on anyone, but the support here is amazing.

I have a scan tomorrow, results on Wednesday, so please everyone keep your fingers crossed for me! I've just finished my first three cycles of capecitabine and I'm really hoping it's working.
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Afternoon Funnyface

Good luck with your scan results

What shocking weather we are all having at the moment. 5 inches of snow which is crazy. we are supposed to be in spring. In America where you live do you tend to get bad winters?

It was very windy and sleet showers yesterday. But brighter today but still very cold. Roll on the summer.

Linda

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Ladies, I might need more support getting through the next snow storm than my scan results. Now saying 8 inches!!

 

FF

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I’m glad too. Funny the little positive things which this horrible situation brings. Thank you for welcoming me
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Good luck with scan results today Ff. x

Welcome Anne, I'm glad you have found us.

Bon xx

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Thank you for welcoming me! I am loving the forum. So much humour and support from all over the world. I’m in London. No snow and not much dancing!
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Carolyn, Please dance away! They are calling for 5 inches of snow on Saturday! This is craziness!