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Bone mets - please join in

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Re: Bone mets - please join in

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! 

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Hiya funny face

Yes I thought it a bit selfish to keep the winds all to our selves in the UK so I thought I would share them with you !!!

I will do my sunshine dance for you tomorrow. ..

Hugs xxx
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Welcome Anne! I have lung mets plus lymph nodes in chest. I've had mets since November of 1995! As of today I'm doing well. (Scan results tomorrow) I live in the USA. I work PT. I pretty much just keep smiling and moving along! 

 

Carolyn did you send those winds across the pond! Sixty mph gusts today! Big tree branch down in front yard. Hoping no trees come down. Still longing for a sunny spring day! 

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Dear Nicky Thank you for your reply. I hope I’m now in the right place. It’s very reassuring that you and others manage to live so positively with bone mets. I am so glad I found this forum. Thank you Anne
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What a lovely thought - all calm here now. Really lovely. I need to get my mind in the same state as your garden!
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Wow. .what a wild and windy night we had ..I had my bedroom window open but the wind blew the curtain over my face ... which woke me up with a scare !!
Hubs had to secure garden furniture and canopy which was in danger of ending up in space !

All calm here now xxxx
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That is good Anne that things are in place, please keep us posted, take care.
Hugs Janette xx
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Thank you for replying. It’s easy to feel overwhelmed. Such a help to hear from people who understand
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Anne

It looks like your oncologist is on the ball and going in heavy with chemo first ..everyone has a individual treatment plan which suits them ....I'm sure as you are so active and fit ..the chemo will be well tolerated by you ...and give the little blighters a good kicking.

Please keep in touch with us so we can support you ..we don't bite !!

Hugs xxx
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I’m not sure if my reply posted or not! I meet with the oncologist on Monday. Then I start chemo. It’s very hard to take all this in! It’s so helpful to hear from people who’ve been through this
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Thank you. I am seeing the oncologist on
Monday. Then I start chemo
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Thank you for replying. It’s hard not to see it as an immediate death sentence! It’s so helpful to hear from people who have coped and are coping
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Hi Anne

Yes, getting that diagnosis of 2ndry breast ca is devastating, I remember it well, it was Xmas 2016. I had a bit of pain which got a bit worse, had 1 dose radiotherapy and by July 2017 went back to work full time on my feet all day and have continued to work ful ltime. Can't run/won't run most people think I'm old and grumpy. It took me quite a few months to go a day without thinking about the diagnosis but I do now. With bone only disease some folk go on a long time ?18 years. Once I got sorted out in July last year I live pretty much the same as I always have except that most weeks I have a treat or two with the kids. This is actually a life improvement for me.

best wishes

Pippin

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Hi Anne, welcome to the forum but sorry you have had to join us, it’s still very early days for you, have you been given a treatment plan yet? As Carolyn has already said, once you know what treatment you are going to be on we can offer more advice.
I know it’s a very scary time for you and there is a lot to take in, please feel free to to ask away any questions, worries etc.
Hugs Janette x
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Hello Anne

Sorry you have had to join us ..it's a bit of a kick in the teeth when you get the dreaded dx of secondaries.

Obviously you are waiting for details of a treatment plan and until you know what ..we can't really offer much advice. If could be a hormone pill like letrozole or similar and a monthly bone injection called denosumab which is easy peasy to tolerate.
Most of us here are on it and cope well ..
Anyway ..please keep in touch and we are all here to offer a bit of daily banter, advice and support for you ....it all becomes the normal way of life as time goes on.

Hugs xx
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Hiya lyndyloo

Have pm you ..these tablets are a bit of a challenge now on day 5 ..
But I'm going to keep going and see if the side effects ease as time goes on.

Hubs has cabin fever ..dying to get out on his garden too ...sunshine out now here after a damp day.

Xx
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I have just been diagnosed with bone mets in the spine and pelvis and am so scared. I feel so well and have just walked five miles. No pain. Can’t believe I’m so ill. What will my life be like? Any thoughts welcome please x
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Hi Carolyn

Sounds like treatment is going OK apart from trots. It is a bit of a pain having to go to chemo unit more regularly. Everolimus can cause raised sugar levels and high cholesterol so they should check for that. as well. Fortunately it not affect my levels.

As I mentioned before I used to take tablets in the evening whether that makes any difference not sure.

Wish weather would Improve so I can get out for a walk or do abit gardening. Have not cut grass yet this year.

Linda

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Good morning ladies

Up early today ..new pills gave me the early morning trots so here I am bright and early.( tmi)
The new E and E regime has changed my routine now as every 4 weeks I have to go to the chemo unit to collect them and have the bone juice.
BUT: I get a little mot first ...bloods, pressure, heart temperature and I get weighed ...now this is like Weight watchers / fat club in reverse as if u loose a pound ..nurse says "oh dearie me" and u don't get a sticky gold star but asked if u are eating ok !!

Anyway have a good day might try a bit more zzzzzz
☺☺☺
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Go Linda and Nicky! Love hearing those amazing numbers! 

 

Easter Bunny sprinkled snow on us on his way out! 

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Well done ladies ..an inspiration to us all that live with the fear factor !!
Hot cross bun or easter Egg? Decisions decisions ....maybe both !!

Hugs xxx🐰
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Congrats Linda
J xx