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Bone mets - please join in

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Re: Bone mets - please join in

wishing you all the luck in the world f f and do hope you enjoy xmas with an easier mind.

love reneex

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Ff

So glad your op is going ahead. Hope you'll find yourself feeling much more pain free for Christmas. Will be thinking about you tomorrow.

Bon xx

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Ff
We will all be holding hands for you tomorrow during your op ...glad you have the go ahead as anything is better than pain.
Hope u bought your new Mickley Mouse pj's for hospital too ..

Loads of love xxxx
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Finally got the official approval for surgery. I will get a phone call late tomorrow afternoon for what time to report! Thanks girls for your support. FF

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Hope everything goes well for you Funnyface and you’re quickly home, pain free, to enjoy the festivities and your new addition to the family, when she arrives! Take care Kxx

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Funnyface, I’m keeping everything crossed for you hun, stay strong, you will get there you are a very strong lady and have been kicking the backside of this disease for a long time now!!! You have your wonderful hubby by your side supporting you too!
Sending you hugs from across the pond ((((()))))
Janette xxxx
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Hope it goes well FF, sounds like you're really suffering at the moment.

Xxx
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Lyndyloo, It is a day procedure normally. They are most likely keeping me over night bc of my lungs. Biggest worry is hoping I can come right off the ventilator. I'll admit hearing that has me scared. I need this surgery. I need out of this pain and to get moving again. I have no energy or ambition. I'm going to have to fight to get my energy back. Hoping coming off the pain killer will help all of this! I just don't feel like me and I hate it. FF

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Àfternoon FF

Hope you get the go ahead for your operation as there is nothing worse than being on pain all the time.

Have they said how long you will be in hospital or what your recovery period is. Fingers crossed you will out of hospital and recovered enough to enjoy Xmas.

Linda

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Hi FF

Really hoping you get the go-ahead

Bon xx

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Thanks Carolyn, Pre-ops are finished.Waiting to hear from surgeon or anesthesiologist that it's a definite go.  I need to get out of this pain and get the worries behind me. Those grandma duties will be here quickly. FF

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Hello FF

Only 4 more sleeps to your back op ..hope all the pre op tests are ok and it goes ahead ....
By January. .you will be fit and well and doing the granny thing ...pushing the buggy ( stroller) around showing off that little grand daughter !!
Hugs to everyone xxx
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Srilata, so sorry you are having such a bad time. I can't really give you any information but I hope that your next treatment works well. Did you manage to go on your holiday?

Love and hugs to all

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Hi ladies and to all in the Grandma/Grandmom-to-be group.

Our little grandson is 3 months old now and doing very well, smiling and laughing away -which doesnt half help the parents when they are so exhausted!  He is a very contented chappy and I do keep telling my daughter that she's very lucky that he is - she certainly wasn't so 'good' - but then again she was 7 weeks prem so that added to the hard work.  Glad your grand-babies are home now and you get to have lots of cuddles Carolyn, it must be doubly exhausting though for their parents.  Not long now FF and I do hope you get your surgery over and done with very soon so you are not in so much pain - all the better to cuddle your new Grandaughter.

Thanks for asking about the exestamane Carolyn (I still can't spell it so this could be right or wrong as I'm on the pc whereas my ipad makes the right suggestion for spelling all the drug names/treatments!).  I must admit it is so nice not to be on any form of chemo or IV treatment at the moment.  The last time I was only popping a pill for my mets was back in 2013, since then it's been far more blood tests and hospital visits than I can to count.  Not really suffering with the usual SE's of hormonal treatment (and I would recognise them having already had several different types of tablets/hormonals) but definitely notice the higher energy levels I have which is such a bonus.  Big girl pants time happens after Christmas so we will see then how the little pill is working, fingers crossed that it will for a while at least.

Take care all

Nicky xx

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Thank you Nicky. Five weeks to go! Baby is in position. I need to get through this surgery, so I'm ready. I hope you are enjoying being a grandmom. FF

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Hello. .there is a thread on skin mets under treatments section ..there are lots of helpful tips there which might help ..
Sorry to hear this and that fulvestrant hasent stopped the little blighters breaking through ..
Hugs xx
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Hi, my bone Mets has now changed to skin Mets. Pls can anyone help with any information about skin Mets , Fullvestrant didn't work. So I have to go back to chemo. If there is any suggestion it will be most helpful. Thanks Srilata
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Hiya nicky
Thanks for asking about the twins ..they are 6 weeks old now ..came home 4 weeks ago ..and doing really well ...sort of normal baby weights now. They are coming over this afternoon for squidly nanny cuddles. They are one pink and one blue !!
How is your little grandson doing ? They certainly create a distraction away from our little problems !

Hope u doing OK on exmestance ..which must be easier than the chemo ...read it's a hormone that's easier on the joints but harder on the tummy !!
Think I'm ready for Xmas now ..apart from last minute food ..
🌲🌲🌲🌲🌲🌲
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Great news jellytot!  Get out there and enjoy Christmas.  I hope the current treatment you are on is treating you more kindly than what you started on - we do all need to lead our lives as well as kicking BC in the butt!  Hopefully you will also be fine with denosumab - it's the bone strengthener that I have had the least side effcts with - not to mention not needing to play hunt-the-vein.

Hi to all other mets ladies, hoping you are able to enjoy this time of the year without too many problems either healthwise or just in general, it's not always easy for everyone.

Also, Carolyn, I keep meaning to ask, how are your twin grandchildren doing? I'm so foggy brained these days  I can't remember if they are boys or girls but I know they were in special care.  Are they home yet, I do hope so for Christmas.  Having had a prem baby myself some 29 years ago it is really difficult seeing them in the SCBU but pretty hard when they come home as they are so tiny - and that was only one baby not two at a time. 

And not long now for you, FF, for your first grandchild. Something to really get excited about in the New Year. (edited to say - 'as you can see I didn't quite read down to your post FF!  You mentioned your granddaughter then so I should have caught up with everyones news before I added this post!')

Nicky x

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Hi Wendy, your absolutely right there about every little pain we get is a worry, I have been pretty much pain free for some time now (apart from being a little achy from time to time) but this week out of the blue I have had horrible hip pain!.....hence the “worry gremlins” are now starting to kick in, It’s not so much the pain i can’t deal with it’s the fact that it’s a constant reminder of the “big C”
Hugs Janette xx
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Hi Carolyn congrats on your stable result too. As you may remember I was diagnosed straight in at stage 4 in Feb following hip pain in Sep 16. Was on tamoxifen for 5 months and then I had a new met identified in Sept L5 so went back to radiotherapy and treatment changed to letrozole . However radio Onc said my report also suggested t3 and t5 so was sent for s bone scan and then chest X-ray. Finally got all clear on Tuesday but the point to my waffling is my Onc said could be referred pain and tablets could be causing knee pain. Funnyface often mentions this affect. Am on 60mg codeine 4 times a day and try to hold off taking more than 2. She has also suggested heat. I think every pain we get makes us worry but hopefully your gp can prescribe something stronger . Wendy x
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Hello Wendy
I'm on the same treatment as you ..scan showed stable recently too ..but a lot more pain lately too ..think I need to see GP for some better painkillers. .paracetamol not doing much these days ...
Don't believe in the painful bones are healing ones either !!
Hugs xx
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Hi Jelly

This must rate as one of the best Christmas presents ever. So pleased for you. Have a good one.

Bon xx

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Hi everyone and our new friends. Just wanted to add congrats Jellytot I know you have really been through it . I too had my scan result this week, was dreading due to new back pain and excruciating knee pain. The latter is keeping me awake but good news Onc said nothing new detected so hopefully letrozole , denusomab and zoladex are working. Early days but best Xmas present. Good luck to all of you who are waiting results. Fingers crossed for you all Wendy x
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Hi Jellytot, amazing news and what a fantastic early Christmas pressie! So thrilled for you and hope you have a very merry Christmas...sure you will! Kxx

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Jellytot, That is the best news ever!! What a major relief. Now, you can move on and enjoy your holidays! Clanging and banging my pots and pan lids!! Will have a glass of wine later to celebrate you! FF

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Fantastic news Jellytot!!!
Hugs Janette xx
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Fab news jellytot. Wonder if I'll be that fortunate next week.
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Hello jellytot
Lovely to hear from you and a relief about the brain. Lots of us here are just on letrozole and denosumab and it's quite easy treatment and for many keeps the little blighters under control for some time ..
Enjoy feeling a bit better and Xmas xxxx
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Morning jellytot

So pleased regarding scan results what a load of your mind.

Now you can look forward to Xmas.
Linda

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Wow jellytot, fantastic news. 

Hope that means you can enjoy Christmas worry free.

Paula

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Hi Ladies,

I'm unbelievably relieved to tell you that the lesions in my brain are not mets! I had to have numerous scans and referrals to specialist neurologists and they have finally said they are not concerned and think they could have just always been there and never would have been found had i not had the scans! They just want to scan me again in 3 months time to see what's what.

I can't remember if I said previously or not, but I am off the trial drug. It was making me too mentally unwell, so for now i am contuing with letrozole and my bone strengthener (which has been switched from zoladronic acid to denosumab becaue of my rubbish veins). 

I hope everyone is doing as well as possible, I have missed you all!

Jelly xx

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Hi Dogsdinner, welcome to the boney mets thread, I think most of the other lovely ladies have pretty much said everything to reassure you.
I’m sure once you’re treatment starts you will become more positive, remember this disease is very individual and cannot be compared to anyone else, avoid “Mr Google” it’s inaccurate and outdated! As for your oncologist, they may be very good at treating this disease but when it comes to the emotional/mental side of it unfortunately most are pretty useless so don’t read to much into their “gloomy expression” do you have a bcn/MacMillan nurse you can speak to?
Failing that the ladies on here are very helpful and knowledgeable, I have learned more on this site than anywhere else!!
Take care, hugs Janette xx
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Hi dogsdinner, we've joined this group at the same time so it's good to have someone to share with, although I had my primary three years ago.

Nicky thanks for your post. The onc said if it's just the vertebrae then high intensity rads and/or surgery to remove the offending vertebrae. I've suffered with back pain for 30 years and really not keen on surgery.

They've put me back on hormones (, zoladex and exemestane) and mentioned the bisphosphonate which will start after christmas. If it's more than one site then oral chemo 2 weeks on, 1 week off.

I told my children's headteachers and heads of year yesterday. My son is in his gcse year so anxious that my treatment goes smoothly this year.

Whoever said live life to the full (or words to that effect) is absolutely right. I've gorged on pasta and chocolate today with not a care for the waistline which is really not the normal health conscious me! Also been ignoring the washing, cleaning, cooking etc (but that really is the normal me!!!)
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Hello, dogsdinner. This is just to say 'welcome', if that's the right word. You know what I mean. You have come to the right place here.......so many wonderful ladies, with so much experience, and so willing to share. Say what you like and ask what you like. Nobody here is surprised by anything! I have bone mets too....primary in 2001 and secondary almost 3 years ago. At the moment I am in the middle of changes because a small liver met appeared. I find such a lot of support and advice here, as well as people carrying on their lives and laughing too! So do visit regularly, and feel very welcome! Everyone is interested in each person here......so do keep us informed and up-to-date!

 

mo

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Welcome Dogsdinner, I was on letrozole and palbociclib for 21 months. Everybody is different but the letrozole within 2 weeks made my knees scream. The ladies on here say different brands are sometimes better than others. I tried another brand and it didn't help the knee pain. Palbociclib has caused weakness in the legs in some people. I would suggest doing some leg strengthening exercises. The strength does seem to slowly come back when you're off of it. All of this being said it is an excellent treatment. I have lung mets and one bone met. I was told I had about 2 years to live. I've been here 12 years. I still work PT and do very well. I've had a few set backs. One in 2012 and a year after it my oncologist said he was amazed that I was still here bc he thought the set back was the end for me. Well, 5 years have passed. Twice I've had to go on O2 and then managed to get off of it.I'm having a another set back and hoping to recover from this one too. I can't say I'm not scared, but keep focusing on the arrival of my first grandchild in January. Baby is a girl.

It takes time to get over the shock, but you will find a way to keep moving. I wish you the best in this! We are here for you.We will listen to you cry, scream, or laugh. Whatever your need may be. Hugs! FF

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Dogs dinner
Welcome to our little family here on the forum ...there is nothing much I can add but stay here and join in the threads as it's a great help to have real people that understand.
In the meantime go for Xmas. .enjoy it and try not to overthink things too much ..it's hard especially in the night but once you focus on the treatment it will get easier.
Hugs xx
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Morning dogsdinner

Welcome to the forum. You have come to the right place.

I was diagnoised with breast and bone mets in 2009. Had mastomy chemo and Rads. Had reconstruction 2012.

Sorry the oncologist was not good. I was fortunate when I got diagnosed the oncologist was upbeat and said if it was going to go anywhere that was the best place for it to go which was quite reassuring at the time.

Hope treatment goes well.

Linda

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Ramade, Nicky, Jo - I don't have to tell you how much your posts mean to me, I'm crying so much I can hardly see the keyboard so forgive any typos! But they are not the desperate tears I've been shedding lately, more relief at having some positive feedback, I am so sick of the doom and gloom I've been getting. I was going to write Xmas off this year but dammit I'm going to try to enjoy it. My love and thanks to you al xx

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Hello dogsdinner, I so pleased you have received lovely reassuring texts. I would like to add, don't worry, I see a different oncologist each time and there is one I hate seeing because she is always doom and gloom and last time gave me codeine and sleeping pills. I have not touched either. I have bone mets in half my skeleton and have had radiotherapy on my spine which I am still recovering from. I think Nicky said don't google and she's absolutely right. People with bone mets do seem to be living for a long time, that's a really excellent treatment you've been put on so take it, try to relax and enjoy Christmas.

big hugs

ramade

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I forgot to add to my earlier post that welcome, if that's the right word, to all new SBC ladies. Something we never wanted or expected to happen but unfortunately for all of us on this part of the forum, it has. We do have a huge amount of experiences between us all of treatments, side effects and options that are available so do ask away, there's usually someone who can help.

riversidedawn, I have seen your recent posts on here and know your log in name from the primary part of the forum so, as with all of us you, must be gutted to be told you now have bone mets. In most cases with bone mets there is more than one site, it's very unusual to only have one bone met so I'm not sure what other treatment your oncologist was expecting to give you when the first nine met was found, unless it was surgery? Whatever the treatment plan is it does treat the whole body so all bone mets would be treated (unless it is surgery or radiotherapy). It will almost always be a bone strengthener plus some other systemic trearment depending on the type of BC you have. Once that has been established feel free to ask any questions as between us secondary ladies we've covered most of the options and can help give advice based on our experiences. I will say don't worry, but we all know that it's almost impossible, especially when you don't know the full story and treatment plan. The only thing that having secondaries has taught me is live each day and enjoy each day and don't sweat the small stuff!

Nicky x

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Great reasuring post Nicky! So many ladies here with bone mets and still living life to the full years and years on from diagnosis , awful of your oncologist to be so negative , yes it changes things but still very treatable for the majority and positivity from the team looking after you is vital! 

You will pick yourself up and the stories across the forum will really help, this isn't a place of constant gloom , so many strong determined ladies to talk to! Xx Jo 

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How awful that the expressions from the oncology team were so bad that they made you feel bad.  However I know what that feels like as I had the same thing in 2008 when I found out I had a local recurrence. I was due to have a mastectomy and had a CT and bone scan as part of that process. They showed up bone Mets and the look of doom on the nurses face told my husband that it wasn't good news before the oncologist had even spoken. However I still here nearly 10 years on living a pretty normal life, up and downs of course but generally carrying on, luckily with no pain which I know bone mets can cause. It will take some time to adjust to this diagnosis and one thing we all advice is do not Google anything! The facts and figures are way out of date and only ever quote 'averages' and we are not 'average' we are individual. There are lots of treatments available and the ones you will now be on are the newest combination of hormone treatment with a tried and tested bone strengthener. You have come to the right place for advice and support as we do all know what you're going through whereas a lot of your friends and family won't have come across secondary BC so won't understand what it means. Take your time to adjust and know that you are not alone in all of this. There are also quite a few ladies on here that have had the double whammy of primary and secondary diagnosis at the same time so it's not as unusual as you may think.

Nicky x

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I turned up to find out date for lumpectomy to be told it had spread to bones. Am now scared and depressed. Treatment is letrazole, palbociclib and biphosphonate infusions. The oncologist and the nurse were very gloomy and I got the impression that the prognosis was not good. I want to be optimistic (I am by nature) but finding it not possible with this hanging over me. Some positive feedback would be most welcome. 

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Thanks Funnyface and Carolyn. Scan booked for next Wednesday and oncologist promised to get someone to call me with results before Christmas. 

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No Bentsen, if you want you can read the post a bit further down

after I had been on it for a few years, I found the pharmacy would get the cheapest, did some research and spotted Sandoz was made by the same company -  then Boots were getting the Sandoz one for me on request...they won't now. Sorry

 

Moijanx

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Hi Moijan

Did you have to try the generic brands of letrozole before they prescibed femara?

Benten.x

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Riversidedawn, I'm sorry I haven't welcomed you yet. I'm Funnyface and from the USA. I live in Pennsylvania and live about an hour west of Philadelphia. I had my  primary cancer Fall of 1995! Then 10 years later found out it set up camp in my lungs. I've now had secondary cancer for 12 years. I've just had a set back and need surgery for 2 fractured vertebrae. I've been trying to find out why I've been in so much pain for soon to be 3 months. Finally the MRI showed the fractures. Surgery is next week if I can get pulmonary clearance for sedation. 

 

I'm sorry you had to join us. There is a great deal of information and understanding by all these lovely ladies. It Is so nice to be able to come here for support . It is a great place to vent and give our families a break. It is very difficult to hear things one by one as they find them. I think it would be much easier to have all the scans they think we need. Call us in lay it all out on the table and give us our an of action. Do not get discouraged if their first plan doesn't work. It happens. Also hormonal treatment can take a bit to show if it's working. The response isn't as fast as chemo. There are a lot of options in the doctor a bag.  

 

I wish you the best. DR

 

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Hello riverside dawn

My heart goes out to you as these bombshells keep getting dropped on you ..it's always a shock to hear about extra things when u r still trying to take everything else in ..
Up to now I thought I was just bone mets but oncologist sort of mentioned a few weeks ago the adrenal glands were responding well with letrozole. .I had never heard of these ..thought they were in my b u m hence the reason i fidget so much until I Googled where they are !! Sometimes ignorance is bliss though ..I try not to Google too much about stats etc ..this disease is what it is ...
Xxxx
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So I saw the oncologist yesterday who confirmed a 2-3cm tumour in vertebrae T12 and discussed various options for treatment. Then he dropped the bombshell that the MRI showed something in my pelvis/pubic bone too, so that changes treatment options. He's booking another much more detailed MRI at Mount Vernon cancer centre which hopefully will happen before Christmas.

Came away with a bag of hormones which I'm going to try again and see what SEs I get this time. Must have a look at the brand names...