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Bone mets - please join in

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Re: Bone mets - please join in

Hello rosie

I was supposed to see my oncologist 2 weeks ago for results but I had to cancel as I had a tummy bug and then wait 2 more weeks to see him as he was on holiday .

I do feel a bit miffed that this has all happened since November when I had a scan last. I would have thought on seeing these new things on scan I would have been seen earlier and then new treatment could have started quicker.
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Re: Bone mets - please join in

Carolyn, it's lovely to hear from you again and I am so sorry that your results were concerning, as you say we sit in a comfort zone whilst a treatment is working and feel panicked when there is change.

 

I just wanted to say that we are here for you, I've even come back on the forum after weeks away! You have always been so supportive and uplifting to others so sit back and take strength from us for a while.

 

You have a raft of treatments still available to you and the chances are that they will work well, you are still a treatment "newbie" really so take heart.I am still squeezing the last few weeks out of my trial, nearly 2 years on and Cape lasted me 2 1/2 years as well.

 

FF, I know what you mean about feeling anxious the longer we work through these treatments, it's emotionally exhausting isn't it but glad that you are posting. Take care everyone, some warm weather would help....a lot.....

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Can I just ask why you had to wait 6 weeks for results ? X

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Rosie
That's very inspiring about your news with the e and e regime. ...oncologist said that the average success rate was about 8 months but of course everyone is different. ..he also said that he was surprised just letrozole had worked for so long on my extensive bone mets !! He was only expected about a year but it did two and half years for me.
Hugs xx
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Thank you all for your lovely comments and support ...think we all get in a comfort zone when we are stable for a while and then when it changes it's such a shock.
Hugs xxx
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Sorry for duplicate msg, it said the other one hadn't gone !, xx

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Re: Bone mets - please join in

Carolyn I am so sorry for your crappy results.  Now hold our hands and let us send you so much love, it's easy to get forget after such a long time stable that the little pests do move and spread and very quickly too.  

I just wanted to say that I am on Exemestane and after 3 months my onc said it wasn't working.  My husband questioned was 3months long enough so the onc agreed to give me 2 more months.  Had scan last week, had results 3 hours later and whilst it showed blood clots on my lungs it also showed that the everything, especially liver was shrinking.  Please don't be afraid to disagree Carolyn, if I hadn't stood my ground I would be back on chemo by now.  X

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Hi Carolyn,  I am so sorry that you received such a crappy scan result, this bloody disease has no heart does it !!  I was on Exemestane from August until December and after a scan the onc said it wasn't working so he was going to change me to cape.  My husband questioned whether or not 3 months was long enough for it to be effective and the onc said he would give me 2 more months.  I had a scan last week, got called back to the hospital 3 hours later.  Everything had either gone or shrunk, especially the liver, so Carolyn please question if 3months is long enough when you go back.   Come on lovely lady take our hands and lift yourself up.  Xx

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Re: Bone mets - please join in

so sorry to hear your news Carolyn.Try to hold on to the fact that there are a lot more possible treatments. It's always a shock and a big feeling of upheaval. Some do very well on the e/e regime.

big hugs to you

ramade xx

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Nicky, Thanks for asking. I haven't been posting much either bc I've had So many medical appointments and new job . I felt very overwhelmed with things. Not sleeping doesn't help.  Plus 12 1/2 years of this sounds great in one hand and in the other hand it's depressing. I've known So many ladies who have left us and my anxiety gets exhausting after all this time. Otherwise I'm OK. FF

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Hi Carolyn

Its lovely to have the chocolate teapot lady back 😉🍫 but obviously not for the reason you have said. As you have supported us and welcomed all the newbies so well in the past we will be supporting you. It’s a pain in the a*** when we learn of progression so give yourself and your family time to adjust and to get to grips with new treatment. Take each moment as it comes and once you get over the shock make sure you get out and enjoy yourself - especially with the new babies and your other grandchildren.

Take care

Nicky xx

ps good to see you posting as well FF, have missed you as well,  how are you doing?

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hi carolyn,

so sorry to hear your news ,but i have not been on this forum either for quite a while ,as various problems to sort out which hopefully are coming togetehr now,so should be back shortly.

we honestly just never know from day to day or in our case scan to scan ,but you will kick those little blighters with every being in your body,i know you will as you are one strong lady and an inspiration to us all.

hope to be back soon 

love reneexx

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Hi Carolyn

It's good to have you back but really sorry your news is not so good. We are all holding your hand, it's time for us to look after you. You've always downplayed your own problems and supported us all, now it's time for us to look after you.

Bon x

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 Welcome back Carolyn! You've been missed! Ff is right.......get those babies over for bouncing and cuddles.

 

mo                     xxxxxxxxxxxx

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Carolyn, We will hold your hand and help you kick so next scan you can toot your horn! Now, get busy and schedule a nanny day with the twins. Their cute smiles and giggles will surely make you smile! DR

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Oh Carolyn what an awful shock for you I really don't know what to say 😕 I know you will pick yourself up though and deal with it, you are such a tonic across the forum and so don't deserve this but as we all know there's not a damn thing we can do other than deal with it! You know you are never far from a shoulder to lean on as and when you need one Xx Jo 

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Hi Carolyn, so sorry about your news, you must be feeling awfulxxx however, your treatment plan sounds well thoughT out and hopefully...at your next scan....things will have improvedxxx

 

lots of love🙏🤗

 

Moijanxx

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Carolyn, what a pig of a scan result. You go out there and kick those little blighters with everything you've got! Big hugs.xx

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Well, you needed those scan results like a hole in the head, Carolyn, hopefully the new treatment will deal with the little blighters.

Sending hugs

ann 💖

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Re: Bone mets - please join in

Hello ladies

Apologises for my long absence but I needed to step away for a couple of reasons. Firstly a month ago I lost my daily e mail buddy after 2 years ..always thought she would outlive me but things happened quickly at the end.
I also had to wait 6 weeks for my scan results and yesterday I got the kick in the teeth I didn't expect ..I now have liver , lungs and adrenal glands mets. .it seems the little blighters got fed up of eating my bones and wanted a warm soft place to party in.

I'm starting exmestance and everomus next week and if after 3 months it doesn't do much will go on vinerobine chemo pills ..

There have been plenty of tears but today I'm ready to give the little blighters a great big kick where it hurts ! Letrozole after two and half years has let me down ...never quite ready for progression.

Anyway I'm back ...to get on your nerves again.

Hugs xxx☺☺☺
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Hi Silver, they were found in late 2013, by accident at another hosp where I was having an ultrasound of my liver for a different reason. We are all different tho, and some of the ladies have had them for 10 years.

 

drugs are developing all the time...so take heart.

 

one of the big things we can do for ourselves is to tackle our diet......I realise everyone is aware of this xx and it’s hard on chemo when we feel so grotty.xx I do keep up with Chris Woollams on his charity website...Canceractive.......he has all the latest news on there.

 

What I also found very useful after initial diagnosis was to pick a choice and stay with it, could be anything, eg ramp up my exercise, or go dairy free, or  adopt the rainbow diet .......or. whatever appeals to you...just to  feel you are doing that one thing that you think might help. However, I’m not advocating anything drastic,esp whilst we are on Chemotherapy xx

 

love to you,Moijan😘🤗

 

have also pmd youx

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Re: Bone mets - please join in

Hi dragoncarine,

 

You could not be more right wrt consultations. 15 mins. every 6 months. I attend at 2 hospitals under the  same trust.

 

I live on my own as I became divorced 10 years ago. I have been allotted a nurse, but as luck has it, we really do not see eye to eye, which means I'm paddling sowewhat solo.....

 

All good wishes,

 

silver...x

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Re: Bone mets - please join in

Hello bon...( is it ok to address u, as such??)

 

Many thx for your reply. I did not know that about bone scans.

 

mmmmm, yes, I sometimes wonder about the cost of scanning. I'd prefer an MRI everytime.

 

I've been on this journey for 3 years, & I use my sense of humour as my shield, but just recently I'm feeling very flat about it. I call mine 'Max'.....in that hoping it'll reach a max.....not applicable, but hey ho.....

 

This is the 1st time I've reached out on a breast cancer forum.....

 

All good wishes,

silver...x

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Re: Bone mets - please join in

Hello Moijan,Woman Happy

 

Many thx for your reply, especially as you have so much on your plate. May I ask, how long is it since 'they' found your secondary mets.?

 

I don't like CTs either and they are not as accurate as MRIs.

 

Hoping you have adequate support. Alternative therapy is so very helpful. I have my most favourite reflexologist......

 

All good wishes,

silver....x

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Re: Bone mets - please join in

Hi Silverlining. It's coming up soon to a year since my secondary diagnosis (and 13 years since primary).

CT scan shows a bit of bone mets - but only the ones they can see on sternum & ribs - so doesn't include arms (or hands which are also currently concerning me). I am fortunate to live in Southampton near to a very good oncology unit. My oncologist is very good at explaining everything in ways I can understand. My family do not live in Uk but I have a very supportive partner.  Ask lots of questions when you see your oncologist, and if you can take someone with you - those have been the best bits of advice I've been given and it helps.

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Re: Bone mets - please join in

Hi Silverlining

Sorry to hear you are in pain

Bone scans pick up any irregularities in your bones like arthritis, you need a CT or MRI scan to find out whether these are mets or not. I had bone mets picked up on a CT scan for something unrelated so I had a bone scan to find out the extent of the irregularities and then more CT scans to investigate what was picked up there.  After that I had a bone biopsy to determine what kind of cancer it was. As Moijan says MRI scans are preferable to CT scans as they don't involve radiation and I think they give more detailed information. Some people don't like them as they are longer and noisy. I think they cost more but they are worth having if the powers that be are willing to pay for them. (Bone scans involve radiation too of course).

 

I have mets in my pelvis and skull but haven't had a scan for almost a year now.

 

Keep in touch

Hugs Bon x

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Hi silver lining, you could request an mri....I have mets in my spine, pelvis, ribs collarbones etc...as it’s also in my liver they are now doing three monthly whole body mri’s, but you might find they can’t run to that...but certainly they gave me the reason that they wanted to monitor my bone mets as the reason for doing the mri’s

 

i must admit, I don’t like cts...although they are shorter, mris are not radiation...just magnets, why not ask them for one...just for reassurancexx

 

 

good luck with everything,

Moijanxx

 

oh, and you can have copies of your doctors letters, which will give you all the updates...but if you don’t want to have those...you have every right to ask about the bone mets.

 

i find my chiropractor has actually helped manage pain that I thought might be the cancer..but now I think those pains weren’t cancer as they’ve gone away..she found my muscles were very tight in all sorts of odd places and worked on them...which did the trick!

 

xxx🤗

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Re: Bone mets - please join in

Hi dragoncarine,

 

You have so much to bear. Does a CT scan pick up bone mets? I thought only bone scans did that....

 

May I ask......how long is it since 'they' 1st. found your secondaries.

 

Do you have good family support?

 

There do appear to be quite a few long term survivors with bone mets. Although I was diagnosed with secondaries 3 years ago, I feel I've learnt very little about the true progression of this disease.

 

Many thx for answering. It makes me feel less lonely, on this journey.....

silver...xWoman Happy

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Re: Bone mets - please join in

Hello Silverlining. 

Some of the posts are quite old - it is encouraging to see people on here for years. My bone mets are in my sternum, ribs, spine, shoulder, arm & skull. I also have some lymph node and lung mets. I have CT scans every 3 months but not had a second bone scan since first one May 2017. I always get the impression that oncologist isn't concerned about the bone pain - left arm for me also - got so I couldn't put a Tshirt on, had some radiotherapy which has helped a bit but pain is starting to return again now. Sometimes I get fed up with the constant pain - for me the worst at the moment is my Sternum which hurts all the time at a low level. Been trying ddifferent pain killers. I've been told I may have another bone scan soon so we can see how my skeleton is doing (lung mets are reducing in size with Tamoxifen & Goserelin).

 

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Hi finty,

 

Not sure how this thread works.....so many of you seem to have been 'here' a very long time.

 

@ finty.....have you had bone mets for 9 years? How amazing! This gives me hope.

 

Can they only find bone mets with a bone scan. My mets are in my pelvis...both sides. Every 6 months I've a CT scan but not a bone scan. I've pain 4/5 out of 10 in my left arm.....I'm never sure if its OK to ask, as they look at my CT & thats it......maybe, I'm not making sense.....

 

thanks all,

 

silverlining

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Hi Wendy
If they give you capecitabine tablets you shouldn't lose your hair. I have found it a manageable treatment because you can take the tablets at home. Main side effects have been fatigue and itchy hands and feet.
Lots more info on the capecitabene thread.
Hope it goes well
Phoebe x
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Thanks Benten and hope your tablets continue to work for a very long time. I never had primary so am in at the deep end so to speak and hormone therapy does not appear to be the answer. I will definetly use a cap Wendy x
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Hi Wendy.  I am sorry to hear the letrozole and ibrance are not working.  I am on the same treatment and don't have a clue if it is working or not as I haven't been scanned since last June. I am working fulltime and like you need everything to be as normal as possible to keep myself sane.I can't really help with any knowledge of weekly chemo but did manage to keep my hair using the cold cap when I had my primary.x

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Hello everyone hope everyone is well and thoughts are with Ladybird. I have been quiet for awhile as been backwards and forwards with scans and medication changes but basically an now on letrozole and ibrance and looks as though not working and have another set of scans on pelvis and spine and ct next week. So feeling pretty down and taking painkillers to keep pain at bay whilst I carry on working. Being normal is my sanity. My Onc says next step is tablet chemo cape or 18 weeks of chemo I day a week . Not sure what chemo all I know is I want to go on hols in June so need my hair. Has anyone else had 18 weeks of chemo. I am not scared if it does the job but feels like I heading into life of chemo . Wendy
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Thinking of you and Ladybird Chris xx
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Morning lovely ladies and thanks for your continued support.
I'm amazed how my cat Toby has hardly left my side since Ladybird left for the hospice. He really is missing her. Sadly she's too poorly to take him to see her now but the hospice has no problem with pets going.
Good luck everyone
Chris xx
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Hi Benton

Thinking of you all

We have a dog and I have to confess he is our surrogate child!

He's such a comfort to us at this time so I can really appreciate what your family are going through 

Hugs Phoebe x

 

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Benten, we love our pets and it’s not surprising as they are constant loving companions who we see every day - which is more than can be said about certain humans we all know 😉Although we have never had dogs we have had to say goodbye to a few of our lovely cats due mainly to old age and it’s never easy. Dogs I think are even a bigger part of your life as you have to be more involved with activities such as walking so their absence has a bigger impact. Look after yourself.

Nicky x

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Chris, I hope Ladybird is comfortable and you are okay.x

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Thank you girls. People say it is only a dog but you know how it feels.x

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Sorry to hear this Chris, hospices are amazing places. Keep in touch as we are all here to give support day or night.

Ramade xxxxxx

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Chris, sorry to hear your news. I hope that Ladybird continues to be comfortable. Hospice staff are amazing x
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Sorry to hear about your dog Benton. Such a sad time. They are truly part of the family x

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Hi Chris

Thinking if you and Ladybird, hoping that there is some treatment that is helping her but it’s good to know she is being well cared for and comfortable.

Take care both of you

Nicky x

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Hello Chris, very sorry to read about Ladybird but thank you for letting us know. I hope it also brings you some comfort to know she is being so well cared for. Thinking about you both, Kate x

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Hi Chris

Thank you for telling us. So glad Ladybird is comfortable and well looked after. She has been well looked after by you too. Thinking about her and you.

Bon xx

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Chris, I'm sorry to hear this about Ladybird. You have been a very loving husband trying to find information to help her. I'm glad you are pleased with her hospice care. We are hear if you ever need to chat. Big hugs to both of you. FF

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Hi ladybird 2, thank you for letting us know how your wife is, nice to hear she is comfortable. Please let her know we are thinking of her.
Take care hugs J xx
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Hello Ladybird 2, thank you for letting us know. Do feel free to drop in and chat to us anytime, I’m glad Ladybird is well looked after and comfortable. Send her our love 💖💖💖

 

Moijanxx