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Please help me on bone mets

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Please help me on bone mets

My friend has been treated for arthritis and in pain  for 18 months........11 years post dx and thought she was over it...............

 

Bone mets dx now .............inoperable............and is looking for chemo to knock out the tumour and to let her bones re-generate for her to have an operation.............

 

I'm a realist........no head in the sand here......................what are the chances.........

 

To me it doesn't look good.........................

21 REPLIES 21
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Sorry to hear it was painful for your friend maltomlin. If it was uncomfortable lying still they should be able to provide cushions, support rests etc. Hope you both have a good Christmas. X
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I have to say that she's had great support from the MacMillan nurses..........social services too..........they've all been a great help ...............

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Thanks Belinda

 

She was originally scheduled for just one dose of rads but that has now changed to 5.............

 

Her first was yesterday, second today.........she found it very, very painful and was in tears...........she's already on morphine and has oramorph for breakthrough pain..........but she's very stubborn.......won't use a wheelchair and insists on managing with crutches.............

 

Of course she has a few events coming up over Christmas and soldiers on..........but I do worry as she already has a hip fracture, whether she should be easing up............... I understand that she she really doesn't want to give in to this, but I'm sure she could do further damage...............

 

I'm so thankful for all the replies on here..........I know you all have your own issues/problems.........

 

 

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Hi, pain flare can vary in intensity and not everyone experiences it. I have had it happen a couple of times, very soon after rads and in both cases the pain became worse but was over in a couple of days and after this I was completely pain free.
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Thanks for the all the info you've given........but sorry.........another question for my friend............

 

She still refuses a wheelchair and is coping with crutches..........she's basically carrying on as normal (and that's great).

 

But she's scheduled for rads this week and has been warned of a 'pain flare'.............can you tell me how soon this happens and how bad it is?..........at the moment she's on morphine & has oramorph for the breakthrough pain............she's planned loads of events etc over Xmas and I just wonder how fit she will be.......will she be ok?

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Thanks for all the recommendations.........you're so right...........

 

I did ask some questions about 'how long letrozole would take to have any effect' , 'what about radio' etc.... but was lead by her ...............she really doesn't want to know..............so I was very quiet (not like me).........

 

When they said that her organs weren't involved 'except for a lung nodule' my ears pricked up.........she's just 'happy' with her head in the sand........I honestly don't know what is best........she's spent the past 11 years in 'happy land', and who I am I to burst her bubble?

 

She actually said (with the onc)........''ll get over this and then I'll be OK'.........she's scheduled for rads next week.......and is staying on letrozole + bone strengtheners ....for the next 3 months.......... the onc is holding the big guns for later.................

 

I really don't think she realises how serious this is..................she still won't have a wheelchair........although the onc (& ortho surgeon) have told her to keep her weight off the hip......it's in danger of another fracture.........

 

Thanks to you all................your experiences are so important................

 

Her hip/spine is so fragile..........but she's so stubborn & wants to carry on as normal...............

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Thanks for the replies.............
The visit with the onc was 'what I thought it would be'............
Basically they have left her on letrozole.......for a couple of months to see if it's working.........
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My only input is that everyone is so different in what they want to know or not. Your friend is very lucky to have you supporting her. I am very lucky with great support which makes such a difference even if it is just a quick "how are you" phone call. I want to know everything and found it hard that I wasn't being told alot. I have a specialist nurse from our local hospice who comes to see me and who I can contact at any time to ask questions about anything. Last visit consisted of a very long conversation about my bowels and what to expect at the end!! It's what I wanted to know but he did say that many people don't want to know which is why some oncs don't tell you unless you ask. Maybe your friend would be happier with someone coming to her home where she would feel more comfortable asking questions. My oncology unit nurses arranged my specialist nurse and they also arranged for the physio people to come to see what equipment could be supplied to help me. I was given a wheelchair for when I get too tired to walk and simple things like a grab rail to get in and out the shower and a frame thingy to go round the loo to help get up and down. I also was given a high stool to perch my bum on if I get tired when I am in the kitchen. All small things but a great help which could help your friend to but your friendship will be the greatest help. Vicky.

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Feel free to ignore my advice. 🙂 But here's my thoughts, I personally wouldn't ask if chemo or hormonals will hopefully stop the bc in it's tracks as the Onc doesn't really yet know, can never predict accurately how well a treatment will work nor for how long. If he was to try to answer and was quite pessimistic it could be harder for your friend to move forward, it's such early days for her still. Also, with hormonals and bone mets, it can easily take three months before you feel any, or are able to detect any improvement. It's a slow process. I would, gently suggest, perhaps taking your lead from your friend, if she gives you any pointers. Do you know if she is wanting you there to support her rather than ask questions? You may find it frustrating but it's really wonderful you are there supporting her, being such a good friend. I hope the appointment goes well. X
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Hi,if I were you I'd ask the questions on her behalf. She might actually be glad you did as she may be scared to ask them. Sometimes people bury their heads in sand as they are scared.
Hope everything goes okay with appointment, huge hugs, Helen xxxxx
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Many thanks for all the messages..........I know you all have so much on your plates and I appreciate it so much..........

 

When first dx, a few weeks ago, she was immediately put on Letrozole & bone strengtheners...........saw an ortho surgeon who wouldn't touch her.........it had gone too far (she already has a hip fracture & is in a wheelchair to keep her weight off that area)............she was referred to one of 3 surgeons who they thought may be able to do something, but he said 'inoperable'......basically there's no bone left there.....so no hip replacement or anything...........

 

He referred her to the onc.........saying that treatment would hopefully stop the spread and then the bone could re-generate...........then he could operate...........

 

I don't know much about all of this, although I try to keep up-to-date with different treatments (for my own sake)..........but I do know that you have to be your advocates and up-to-speed........

 

Anyway, she's been referred to my onc (who is wonderful.......based at the Christie), and has asked me to go with her tomorrow for her first appointment.............

 

If it was me sitting in the chair, I would be asking how they know that her ER/PR+, HER2- hasn't changed this time round?.........what are the chances of chemo etc stopping the growth in its tracks to allow bone re-generation? Amongst other things......but my friend, as I said is a 'head in the sand' kind of person......nothing wrong with that, everyone deals with things in different ways.........but I really won't feel comfortable asking the questions that I feel need to be asked (but, as I say that's me, not her).

 

She's such a lovely person....but just doesn't ask any questions.....after her dx 11 years ago, she didn't even know what grade she was, what stage........ and was amazed that I knew she was ER/PR+....just because she'd been on Tamoxifen. Not like me!!

 

How should I handle it? Advice please.................

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Hi,I agree with Belinda. Your friend should be on bone strengtheners too. The new one denusumab is starting to rebuild my bones.
It can be difficult to except help if you have always been independent as it should like your friend is. But there comes a time when we all need a little help from our friends. She's probably still in shock after diagnosis and coming to terms with every thing. Be there for her and hold her hand.
Huge hugs,Helen xxxxxxx
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Hi, when my hip spontaneously fractured I had it replaced and also have a long pin going down my leg. I use one crutch now but for many years managed without one. Bisphosphonates would help your friend's bones, help prevent fractures, strengthen the bones, link here,
http://www.breastcancercare.org.uk/breast-cancer-information/treating-breast-cancer/secondary-breast...
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Thanks Belinda.............but they've told her that her hip/spine is inoperable..............too little bone left........only option is chemo to knock back the tumour and hopefully regenerate the bone...........

 

xx

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Thanks Belinda...................she was referred to one of three surgeons in the UK who may be able to help.........no joy......it had gone too far.............so now back to the oncologist to 'treat the tumour' so that the bone may re-generate itself...........and then surgery........................

 

I'm just worried about her state at the moment.............what are the chances of her hip breaking? What happens if it does?       She's very stubborm & won't accept help via  a wheel chair etc is struggling with crutches...............

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You're right Belinda.............she DOES have her head in the sand...........and that's fine......who's to say what is the right way to deal with it........we're all different..........

 

Thank you

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Hi again, I was diagnosed, with bc and bone mets when my hip spontaneously fractured, twelve years ago now, I was in my early 40's, had a hip replacement, it went well, sorry I'm waffling as wondered if this is also a problem for your friend? If so you could suggest she gets a referral to an orthopaedic surgeon. I know others have had metal plates, rods, all sorts, a good orthopaedic surgeon may be more optimistic about finding ways of keeping your friend mobile.
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Thank you Belinda.......I know there's no cure (I'm not sure she does).....I just wonder how 18 months of an arthritis dx will impact on her treatment..........she's refusing a chair..............but I think she needs to get the weight off her hip.......Thank you......
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Hi, Helen is right, there is no cure for Secondary Breast Cancer. We all hope for a good response to our treatments and there are more treatments that have come into play since my diagnosis. It must have been quite a shock after eleven years, my very best wishes to your friend. If she is happier to not know everything and that is her way of coping I hope her Onc is aware of this. We all deal with this differently. X
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Thanks for the reply

 

I'm really worried about her.........she seems to have her head in the sand..........I'm worried that they've said 'inoperable'...................

 

She doesn't 'google' or look on the internet..........she seems to be 'happy' knowing nothing. I don't know what's better..............

 

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Hi, so sorry for your friend but she's lucky to have a friend like you. Yes,met are not curable but they can be treated. Our wonderful Belinda has had bone mets for 11 years and is going strong.
Please,try to reassure your friend,she will get lots of support on here .
Hugs,Helen xxxx