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Bone mets - please join in

Jools-50
Member

Re: Bone mets - please join in

Hi Lesley123 not sure if you are on the same regime as myself I'm on palbociclib , letrozole and denosumab and am tolerating the meds well. My first CT scan last week showed spine and hip cancer stable. Hope this helps

Jools xx

Lesley123
Member

Re: Bone mets - please join in

Hi I was diagnosed with bone mets in my spine in Dec 2020, thought I had arthritis and it turned out to be Cancer absolutely devastating. My treatment starts this week, Oral Chemo, Densonub and some other drugs, can anyone tell if they have been put on Oral chemo and did they have many side effects. Thanks

Secondarysister2
Member

Re: Bone mets - please join in

Thank you for replying Windflower and do keep us updated with how you are getting on! 😊 

That is bad that the doctors told you it was immaterial as it is stage 4. If anything, I would think it is more important to know as you have to live with the disease. They should equip you with all the knowledge they have!! I took some hope in that my mums is lobular as it is slower growing (grade2) than other types. Maybe I’m giving myself false hope or false sense of security there, but anything ‘positive’ then I will cling on to it with everything I have!

Take care Windflower! Wishing you all the very best Xxx

windflower
Member

Re: Bone mets - please join in

Hi Secondarysister2,

I know it might sound dumb, but no-one has ever told me what kind of breast cancer I have.  Originally I was just told it was 2cm and it must have been oestrogen positive because I had Tamoxifen for five years.  I had a lumpectomy (this was to establish whether or not it was cancer).  It was supposed to be "early breast cancer".  I didn't have any CT scans.  I don't know whether they existed then.  I didn't have any further surgery, but had radiotherapy and what they called "mild" chemotherapy, which was F5, E-something and Methotrexate in tablet form.  After the radiotherapy I had Tamoxifen.  I had a bone scan at the time which was fine.  I didn't have any lymph-nodes removed, but those in my neck, under my arm and the scar site were treated with the radiotherapy.  When the cancer "came back" nobody told me what kind it was, just that it was Stage 4.  From what I have gleaned since, I assume it must have been lobular, as it seems to be extremely rare to get mets in the peritoneum.  When I queried the type, I was just told it was immaterial, as it is now Stage 4.  I have Anastrozole so am obviously oestrogen positive.  I also have been on Denosumab for over five years.  I actually was given FEC chemotherapy after my secondary diagnosis although from what I have read, it isn't usual to be given stronger treatments.  I'm very glad I was given it, rather than just hormonals from the outset.

I'm sorry I can't give you any more information.  It's a bit of a puzzle to me too!

You are a wonderful daughter, doing so much research for your mum and supporting her so much.  Hopefully she will continue to do well.

Best wishes

 

Secondarysister2
Member

Re: Bone mets - please join in

Hi Windflower,

What type of breast cancer up is yours? I couldn’t help notice you said it was in your peritoneum which I know is a common place for lobular which my mum has.

You offer so much help and inspiration in sharing your story. So thank you!! My mum has her first scans since bone mets diagnosis on Monday and I am extremely anxious. The only thing which calms my spirits is reading other people’s experiences. How resilient you are, how you’ve overcome so much and continue to do so. I honestly think I would have lost my sanity without this thread!! 

Xxx

windflower
Member

Re: Bone mets - please join in

Hi DiJoy,

I too was originally diagnosed with BC in 1995.  I was discharged after five years and had almost forgotten I ever had it!  But in 2015 I was very poorly and it turned out that I had a blocked bowel caused by secondary breast cancer in my peritoneum.  Shortly afterwards I was diagnosed with multiple bony metastasis in ribs, spine, pelvis, etc, etc.  These must have been there for some time and I hadn't had pain from them.  Anyway, the cancer in my peritoneum seems to have faded into the background and my bone mets have been stable for almost six years now.  I am actually due to have a reversal of the ileostomy I had to have because of the blockage, but this was put on hold for the first lockdown and now I don't suppose I'll get it for some time although I was supposed to have it "in the New Year".  It seems to me from reading the posts in this forum that lots of people are diagnosed with secondaries many, many years after their primaries, so it seems that it can lurk unknown for a long, long time.  I take hope from the fact that as it lay hidden for so long, it may continue to grow very slowly, although that is just an observation I have made as time has gone on.  Survival rates seem to have improved so much since we were first diagnosed with more knowledge and many new treatments.  I wish you all the best and hope that you remain stable.

Windflower

Timmycat
Member

Re: Bone mets - please join in

Hi Dijoy,

So you were dx in 1995, assuming that was for bc, then 25 years later, it spread to your spine, again such awful news for you, and the scan was for something different, my goodness, indeed the shock. Thank you for your kind words, and support I really do appreciate yours and everyone's advice and help.

Extremely good to hear that you're stable at the moment, excellent 😀

Timmycat
Member

Re: Bone mets - please join in

Hi Stoney, many thanks for your reply, and so sorry to hear about all you've gone through, can't imagine how terrible it must have been.  It's so weird you had no symptoms, the main symptom I had was excruciating pains in my hips, ribs and upper back, and still the breast cancer was missed on my mammogram. 

So you've had primary bc since 2003, then bone last year, and gone though hell and back, indeed, can't imagine the shock., so sorry that you're still in pain.

I'm on Kisqali (ribociclib) a newish trial drug, Letrozole and zometa for bone weakness, pain control is 25mg continuous morphine twice a day coupled with paracetamol 4 times a day (supposed to work well with the morphine.  This has worked quite well for me, I'm able to be active again.

Wishing you very good luck with your ct scan, and incredibly pleased to hear you're stable at the moment. I had a scan last Saturday,  so like you am awaiting results. Crossing everything for both of us 💕 x

 

DiJoy
Member

Re: Bone mets - please join in

Hi Timmycat,

I too have bone mets, to spine only. I'm taking Palbo, lezostrole and Denosumab for bone strengthening. My first dx. was in 1995, and this was picked up in February last year, when I had a scan for something entirely different, so I can fully appreciate your shock! Thus far everything is 'stable.'

Stoney
Member

Re: Bone mets - please join in

Hi timmycat, welcome...sorry to see you here...2003primary bc, 2019 found out I had stage 4in bones , had a hip replacement, and a plate put in my leg, I'm still in some pain from my leg. I had no symptoms at all, so it was a great shock to get this news.. I'm on palicibo (sp) xgeva bone strengthener and faslodex... everything seems to be stable at the moment, had ct scan this morning, hopefully I'll get results within next 2weeks..  

Timmycat
Member

Re: Bone mets - please join in

Hi finty, I'm new to this forum so have only just seen your post. I was dx with bone mets last January,  so a year in now. I haven't asked for a prognosis as I'm too scared. I'd like to chat to others about this and gain knowledge and find out which meds they're on etc., and how they cope. I realise yours is an old post, I'm still trying work out how all this works and also how to communicate with other people. I'll be very grateful if you can help me. Many thanks. 

BobbieLew
Member

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Yes I also feel like such a pain, my onc secretary knows it’s me on the phone before I even say my name, but I figured if we don’t nag them no-one else is going to do it for us unfortunately! 
Seeing someone new may be a good thing, give a different perspective on things from what you’ve had previously 🤞🏻 
I totally get what you mean regarding things changing, although fortunately I’d had a baby 4 months before diagnosis (although at the time I felt far from fortunate, just guilty that I’d leave him without a mum) but plans for anymore won’t be possible. Personally I’m in a much better place the last few months and I do think the books helped me to be a bit more in control of things and do my own research like you, rather than just waiting on being told what do to next by the onc. However I often yearn for the days when I could eat & drink what I want without guilt! xx

Jo7
Member

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Hi @BobbieLew 

Thank you for your post. Yes it was such a shock to the system straight off- like a double whammy.  I’m still struggling with it to be honest- feel like that’s never going to go away and I'm not sure how to really deal with it. It has changed my life completely in regards to fertility, my career, my friends and covid is the rotten cherry on top! And also putting my family through this after other things we’ve recently had to deal with! It’s all very overwhelming! Thank you- I’d heard of one of those books but not the other. Yes I think I will order them thank you as I try to read as much as I can. I changed my diet last year so again another change. I get most of my answers to things by researching and reading for myself as professionals have told me very little. I’ve been thrown leaflets to read on everything. I do try to be positive but find it hard sometimes but reading positive stories on here does really help a great deal! Feels like I can breathe again for a bit when I read a positive post! Thank you for your good wishes. I received a call today and my oncologist is off for a few weeks so I’ll be seeing someone different. I always come with a notebook full of questions.. I think they hate to see me coming lol!

Thanks again and take care!

Jo xx

BobbieLew
Member

Re: Bone mets - please join in

Hi Jo,

I just saw your last message and just wanted to send good wishes for your appointments this week, I hope they listen to you and you get what you need. 
I am 38 & was also diagnosed straight to secondary in July. Was struggling in the beginning but I have read a couple of books that have really helped me have hope based on other people’s positive progress. You may have read them already or it may not interest you, but if you are interested I would recommend How to Starve Cancer & Radical Remissions. There are various others, but these are the only ones I have got to so far!
Good luck for Thursday ☺️ Xx

Jo7
Member

Re: Bone mets - please join in

Hi @Gillyflower ,

Thank you again for your reply- I phoned again today but they want me to up pain relief so I’ve done that. I’ve bloods tomorrow/today (tues) and see oncologist Thursday so will see how I fair tomorrow. But I will keep pushing to be checked- I find it unfair that I didn’t get my bone injection and Palbo because of Christmas and I’ve had to wait an extra week for them for no health reason- it just makes me more anxious. I could cope with the pain a lot better if it was bone healing! That would be nice but unfortunately my brain always goes to worst case scenarios and then the only way is up from there. I’m 38 and was very active before this and I’ve never had any problem with my bones- first time diagnosis straight to secondaries. I’m over a year on treatment and still have really bad days emotion wise- think I’m struggling to accept the diagnosis when my family have been through so much recently- I hate putting them through more! I get waves of absolute panic and despair and then other days I’m ‘fine’. Just seems to be one thing after another and grieving for so many things all at once is very hard! I don’t understand why we still have to fight to be listened to when we are going through so much already- they don’t make it easy for us!

Fingers crossed for some good news and for a more compassionate oncologist who doesn’t make you feel like you don’t matter because you’ve got secondaries!🙄

Thanks again

Jo xx

Gillyflower
Community Champion

Re: Bone mets - please join in

Hi Jo,

Just saw your post on this thread.  Definitely don't wait for the scans as it sounds like the pain has reached unacceptable levels and needs checking out asap.  At the very least, the x-ray is quick, you can have that done at a local health hub rather than a hospital.  You don't want to end up waiting until you're in a situation where if it is mets, they have damaged bone to the point of it fracturing or breaking.  That would mean surgery and having to stop your meds until you've recovered enough.  Please do ring them tomorrow and tell them you're worried and see if they can get you in somewhere that isn't an A&E.

On the flip side of this coin, sometimes pain can also indicate the bones are healing, or it could be general ageing, or side effects from meds causing aggravation somewhere.  I had a swollen, painful knee for no reason back in May, I could hardly walk on it.  I went for an x-ray straight away, expecting to be told the mets had spread and my leg was probably going to get chopped off (I always make things more melodramatic than they need to be in moments of panic), and it came back totally clear so GP said it was probably just the muscle/cartilage being inflamed.

However, you are spot on about one thing - absolutely trust your body, listen to it and don't let any medical person fob you off until you get the help / treatment you need.  You know your body best and if something doesn't feel right, push every button you have to so that it gets sorted.  My breast care nurse and consultant always tell me "Don't wait for us or rely on the hospital...if you feel something is wrong, you need to be pressing all the emergency buttons and make us listen to you."  

Hope you manage to get something sorted! xx

Jo7
Member

Re: Bone mets - please join in

Hi Everyone- thank you for your replies. Yes I think I need to get it checked sooner rather than later. I phoned my breast care nurse who told me to call the helpline who told me to call my GP. Unfortunately bank holiday and then weekend! GP and helpline said to up my shortec and GP is calling me Monday to check how I am. I have scans 19th and 21st January but not sure I can wait that long. They suggested maybe an x ray just to check things and because of covid I wasn’t keen to rush up to A&E over weekend so taking it easy until Monday. I’m worried and hate all the scans. Pelvis at that side has always been sore and I know there’s bone marrow infiltration but the pain has got really worse over the last few days and I’m not sure why. Kinda feels like there’s a hole in my bone- like someone has drilled into it so worried things have progressed. My last CT scan said stable but I feel somethings not quite right! I did go for a walk today and it felt better when walking but I’m scared to push it until I get it checked. Thanks again.

Jo x

DiJoy
Member

Re: Bone mets - please join in

Hi Jo,

As someone else has said, report the pain and do that sooner or later particularly if it's 'new' or more intense than you have experienced before. Heat should help bone pain (or at least it does mine!), but I'd be wary of using heat if your pain is nerve related ('tingly'), as I've found that this can make things worse.

I take Naproxen and Paracetamol for pain and hadn't heard of Longtec, so just did a quick search. It seems to me that your dose of this could be increased, but the bc nurses or your GP will be able to advise you better than I can. Hope it gets sorted for you xx

Secondarysister2
Member

Re: Bone mets - please join in

Hi Jo,

All I have learned since my mums secondary diagnosis is not to be afraid to ask for help and get checked out even if it may be nothing. Sooner rather than later. If you have fractured anything, then you do not want to be walking on it for example. My mum thought she had sciatica and was doing all kind of exercises and acrobatics before she realised it was cancer in her sacrum! It could do more damage than good. Don’t suffer, get onto the docs is what I say!

You say you are on Denosumab... I know my mum suffers aches and pains in her bones for a few days afterwards. Have you had an injection recently? This maybe something to consider?

I hope you get it sorted soon! All the very best for the New Year! Xxx

Jo7
Member

Re: Bone mets - please join in

Thank you for your replies regarding hair loss. Can I ask another question please? I’ve had really bad pain in my right hip/pelvis area last few days. I’ve upped pain relief by using my top up drugs more often, I took a bath, hot water bottle, ibuprofen gel, tried walking (not sure if helping or making worse!?) and I’m now still sore and dare I say it even more fed up. I’m unsure whether to call breast care nurse, helpline or GP as I’m assuming they will say continue with painkillers to see if they work-not sure what they can actually do? I have my 3 monthly CT scan and bone scan 19th and 21st January and see oncologist next week. Is there anything else that could help with the pain? I’m finding sleeping very difficult as I’m too sore and can’t get comfortable. I’ve been on longtec 15mg and Naproxen for over a year now every 12 hours and topping up with 5mg shortec. I’m not sure if this is a lot or a little? I’m scared I’ve cracked or broken something as this pain has got worse just over last few days in particular! I’ve had no knocks or falls. On Palbo/Letr/deno/vit D and calcium. Any ideas?

Thanks

Jo xx

DiJoy
Member

Re: Bone mets - please join in

PS. I meant to add that to try to address the hair thinning effects of Letrozole and Palbo, I've been using a product called 'MOOD' - There's a shampoo, which is really nice and also a spray that you use each time you wash your hair. These are really nice products, and dare I say it? ... They appear to work 🙂 xx

DiJoy
Member

Re: Bone mets - please join in

Hello Jo7,

I'm on a similar regime to you but without the Zoladex. Similar again to you, I have mets to spine (although quite a lot of them). Again, like you, painwise, I have some days when it's evil, and others where I hardly notice it. I also find it difficult to figure between the different sorts of pain, and which sort is being caused by which drug, and what is being caused by the cancer itself. I've been on Palbociclib since last May, and have had two dose reductions due to low white cell counts, so currently take 75mg & hope that will continue for a bit.

I agree, it's difficult to explain to people exactly what's going on when you appear okay!!! I walk every day, up to about 5 miles (I have a very energetic springer spaniel, so needs must!), my scans like yours show 'stable' disease and no soft tissue involvement. I'll take that for now, but am exploring additional options such as the COC protocol.

Good to meet you, and I hope you have a good Christmas xx

Sarahs
Member

Re: Bone mets - please join in

Hi they 

Just been strolling through messages and thought I'd reply, I too have bone mets diagnosed quite recently, how ru getting on now x

Olga
Member

Re: Bone mets - please join in

Hi Jo

Very sorry to hear that you don't feel well. Unfortunately we all have to lieve with various side effects, some are luckier then others. I do understand how you feel, I was on Denosumab, Letrozol and Zoladex for 3 years, and yes, experienced hot flushes, hair thinning and my skin was also dry and lost elasticity, but not as bad as yours by the sound of it. It's luck of estrogen in cells, as far as I understand, it means that drugs do theyr job well, however this interfers with your quality of life. Have you tried Udderly Smooth cream with Urea? Another thing you can try to take some supplements: collagen helps with hair, nails and skin conditions; colostrum is good for balancing things out; Omega oils. Have a look, may be something will help. I also noticed that it was very important to take Letrozol at exactly same time, it helped me with hot flushes.

My family not always understanding, especially when I'm vegetating on the sofa, as I look so well too 😞

Big hug 

Olga xx

 

Jo7
Member

Re: Bone mets - please join in

Hi all,

Just want to introduce myself. I have SBC in bones (pelvis and surrounding areas and spine mostly and wee bits in other places). I came across this post and have been reading some of the recent stories which are encouraging and inspiring so thank you. First time diagnosis at 37 years of age Sep 2019 and I’ve been on Palbociclib, Letrozole, Denusamab and zoladex treatments for just over a year. Everything in bones is stable from last scan. Had mastectomy and rebuild there in August of primary tumour so still recovering from that. Have my next CT scan and bone scan end of January. Am in some pain but it varies a lot- some days I can be really sore (mostly in pelvis) and other days I hardly notice. I’m still adjusting to my new life and still struggling to accept diagnosis. My family have been through a lot over the last few years and this is really just the cherry on top of that and now covid! I manage fine on the drugs- my main side effects are sudden tiredness where a 20 min nap will sort, hair thinning, hot flushes and some pain in pelvis and spine. Recently -in the last few weeks my skin has become very tight and flaky- no idea why? My bloods are normally ok but on a few occasions they have dipped to just under 1 but come up quickly within a few dats of being off the drug- they moved me from 125 to 100mg about 5/6 months in. Just looking for people who unfortunately understand as I find it hard to explain to family and friends how I feel because I look ok!🙄 

Thanks

Jo x

helen44
Member

Re: Bone mets - please join in

Hi funnyface,

Good to hear from you - please check your Private Messages as I have sent you one.

Helen x

funnyface
Community Champion

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Nicky, I haven't been on for awhile and never seem to get to the bone Mets thread. I popped in to say Hi to you. I'm hanging in there. Just hit my 15 year mark for my Mets. Everything just keeps remains stable. A new nodule will pop up now and then and then the next scan they are gone. I did just have one pop up that was larger than the others have been. Most have been in the 2 to 4 mm range. This one was 12.  Having a Pet Scan in January. Have never had one. I hope you are doing well and enjoying life the best you can with COVID, being rampant! I'm enjoying being a Nana. Hugs, FF

grumpy
Member

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Thanks for your comments - I was on letrozole for the primary DX without the fatigue 10 years ago, and I have been on the lowest dose of palbo. The effect is crippling and I'm at my wits end. 

Oh well, onwards and upwards....

grumpy

SecondarySister
Member

Re: Bone mets - please join in

Hi grumpy,

 

My mum was recently diagnosed with bone mets, so I'm still learning a lot. I may have this completely wrong and I'm sure your oncologist will have already thought of this, but I read that Ribociclib is the kinder sister to Palbociclib. It has fewer side effects and I am under the impression it is a slightly newer drug to Palbociclib. I know my mum has been suffering from nausea for 30-40min of the evening on the Ribociclib, but a part from this she is tolerating it well so far.

DiJoy
Member

Re: Bone mets - please join in

Hi there, I'm in a similar position to you with regards to treatment (and homelife!!!), although am controlling pain with paracetamol only currently. To my knowledge (and others, please feel free to correct me), I believe that palbo is one of several CDK4/6 inhibitors, so it might be worth asking your oncologist if they all have similar effects. I'll be suprised if they don't, but can fully empathise with your situation.

You don't say what dose you are on? It may be possible to reduce this. Also, Letrozole can cause similar problems with fatigue & muscle stiffness/soreness, as can Denosunab - Again, it might be worth asking about other AIs and/or alternatives to Denosunab..

I hope this helps a little. xx

grumpy
Member

Re: Bone mets - please join in

Good afternoon everyone

 

I have bone mets in my upper spine, on letrozole, denosumab and palbociclib. pain controlled with Lidocaine patches and paracetamol.  DX was in March 2019. The big problem is fatigue from the palbo, so I am now on a 2 month holiday. Does anyone know if there is an alternative to palbo which doesn't have the same fatigue side effects? I am so weary all the time, can barely walk the dog (wee Joey), do housework, garden, go shopping etc. I try to count my blessings but not having family support I do get hacked off, and worry about maintaining my independence.

Any comments/advice welcomed.

 

grumpy

Stoney
Member

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Hi everyone, results of ct say that my cancer is stable, doctor did say that my wall of womb looked very thick and he's was arranging for internal ultrasound . . He really made it out as if it was cancer, I got very upset.. so I asked to speak to my Onc nurse, who told me there is no concern for my womb, yes, it does look thick but they are not concerned about it, and there's no need for ultrasound.   One part of me is delighted my cancer is stable, other part of me can't stop thinking of perhaps issues with womb.  😢.   

nicky08
Community Champion

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Sorry to hear you are struggling Avrelia. It's so tough at times isn't it?  Hoping you get your calcium levels sorted out soon and sending hugs your way.

Nicky xx

DiJoy
Member

Re: Bone mets - please join in

Hi there, I'm sorry to read about the problems you're having with high calcium. Mine in contrast is very low, so am swallowing what feels like lots of AdCal! I hope they get things sorted for you. xx

 

 

avrelia
Member

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Thanks for the answer, it always sounds a bit reassuring when you hear that someone has had the same problem and he/she improved. Yes they have been trying the liquids, the Zometa and Vit D supplements. Nothing seems to work so far and they concluded that it is disease related. So if Eribulin starts working for me, it should be able to lower it. Its been  3 months now and I wonder what they are waiting for. I hope next wednesday when my appointment is will have more info about my future treatment. I am just sick of people and doctors who are trying to prepare me for the worst, when I am feeling ok and I do not think it is coming. Yeah it will come at a certain point but I am not ready yet. Wil not give up! Was even thinking of leaving the hospital, so fed up I am with everything. I spent half of my time there almost doing things which are not helping at all.

Sorry for the ranting post, just no sunshine on my street recently. It is only then when I decide to come here.

catokitty
Member

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Hi, I am sorry you are going through so much at the moment.  I had raised calcium for about three months.  Have they given you any advice how to lower it? They told me to keep drinking water which I did, gallons of the stuff, and it gradually improved.  If it gets really high they can give you an infusion of bone strengtheners which should bring it down immediately.   My vitamin D was also low and I was prescribed supplements.  Sometimes it is just one thing after another and it is all too much, too exhausting to cope with.  My oncologist never says anything cheerful or optimistic in any way and I think they are all like that.  I hope things improve for you.  Thinking of you and wishing you better times xx

avrelia
Member

Bone mets - please join in

Hi there, going to hard times recently. My calcium is high, phospate and Vit D low. My whole liver is covered with mets and it just took it 1 year to become like that. although I was on Chemos during that time.

Doctors are talking to me in a way to prepare me for the worst they said that it can come qiuck. But I feel great and I kind of not thrust this or just do not want to thrust.

My questions for you is about the calcium. Has anyone gone through such a period? What happened?

I am just fed up with the whole thing. Another one is that dentist told me I do not have enough blood going through my jaw and they need to do some repairwork on one tooth as they cannot extract it. I am so scared about averything!

 

SecondarySister
Member

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Thank you for your kind words!

My mum has had a lot of radiotherapy recently, so I think it maybe the effects from this. So we're hoping! But you are very right, you cannot live your life from scan to scan. When we get her strength up, we will find her some hobbies. My mum worked in a school nursery before, but I think the duties will be too heavy for her to return, so it looks as though she is taking early retirement. Which I am pleased about.

 

Those are good ideas for gentle hobbies!! I will put them to her... Thank you!

Pawsome
Member

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One thing I’ve learnt with having SBC is to try not to worry too much about what scans might show. We have to basically learn to live with the uncertainty of the disease. So try not to worry too much before your mum has her brain scan and gets the results -  I know that is difficult to do. I think we all have our own ways of coping. For me it’s keeping busy and trying to distract myself from thinking about things too much. Hobbies are good for this - whatever you and your mum enjoy. I find reading and doing crafts are quite good as they are quite easy to do and don’t require too much concentration. I do know lots of people with brain mets though and although it sounds scary it is very treatable. But my advice would be to try and not worry too much unless and until you know that’s something you have to worry about xx

SecondarySister
Member

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  • That is so uplifting!!! 🙂 great news!!  Thank you for sharing your story!!

My mum has skull mets too, but she said today that her head feels “fuzzy”. I said, it’s probably because you’ve been resting in bed all day (because of her back).

 

I’ve heard brain mets travel through the blood stream rather than from the skull. Has anyone else heard this? She has a brain scan the end of this month. I’m so paranoid and just want to know what is going on. So we’ll all have scanxiety all over again!! 

Its such an emotional time. I feel a wreck! One minute i’m positive and the next i’m totally worried! 

Pawsome
Member

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Hi, I’m on a similar treatment plan to your mum : denosumab, palbociclib (same family of drug as ribociclib), Letrozole and Zoladex. I found it took a few months to settle on to the treatment (mostly had issues with headaches, nausea and fatigue). But after that my pain really improved due to the treatment working. My disease shrunk by 50% and I’ve had stable scans ever since (1 year on treatment now for me). The meds have also helped repair my bones - I’ve got mets in my rib, spine, sternum and pelvis. The bones are now healing. I’ve also been able to stop painkillers because the treatment has been so effective. I was on oramorph initially due to the pain but now I don’t need to take any regular meds for pain at all. 

The ‘ciclib’ drugs are relatively new and they’ve produced some great results. We’re lucky to have access to them. I really hope your mum gets good results as well and the treatment plan gets her pain under control and feeling more comfortable. X

SecondarySister
Member

Re: Bone mets - please join in

That is amazing!!! I love hearing these stories!! Thank you so much for sharing your experience! I read it to my mum. I know they inspire and motivate her. She is resting in bed today as her sacrum bone is aching and painful. She had medical cement injected to stabilize it.

My mums cocktail of drugs will be Ribociclib, Letrozole and Denosumab. What are your experiences with any of these ? (if you have used them)

 

What medications have you found best to help control everything? Do these drugs stabilize everything and stop things from progessing further or do they actually help to heal the bones?

 

I'm sorry for all the questions, but i'm very new here and we are trying to absorb all the information out there that we can.

 

Thank you 🙂 X

 

dragoncarine
Member

Re: Bone mets - please join in

Hi secondarysister

Just wanted to add my experience. I am 51, was diagnosed (HER-, ER+) quite unexpectedly with extensive bone mets (sternum, ribs, shoulder, arms, skull + possible spots on spine) as well as lung mets in 2017 after years of unexplained pain. (My primary BC was in 2005/6). Treatment for my bone mets consists if monthly Denosumab injections (which my husband does for me) with some top up calcium tablets. It is not hard to bear at all. I have had a couple of zaps of radiotherapy but they only offer if pain is impacting your life and I have had to push for it each time. The worst bit is the pain, and it took me along time to accept that I needed long term regular pain relief. Getting that right makes my life significantly more normal (writing this as Iprepare to go to work)

BobbieLew
Member

Re: Bone mets - please join in

Thank you for the quick reply, and the reassurance regarding the stats, it’s very depressing reading. I’m new to using this forum but I’ll see if there’s a way to search your previous posts to save you repeating a lot of the same info. I was only diagnosed in July but quite quickly realised it has spread to my spine (3 areas) and today my pelvis and liver (4 lesions). I’ve had chemo which hasn’t worked so now on Palbocyclib so fingers crossed that has a better result than the chemo xx

nicky08
Community Champion

Re: Bone mets - please join in

Hi Bobbielew

Yes, I’ve had liver mets since 2013. I am oestrogen positive, HER2 negative (although for a while my then oncologist thought I was HER2 positive as I was just over the ‘line’ so to speak regarding being positive.) My treatments over the years have consisted of various chemos alternating with various hormonal treatments. None of the newer treatments such as palbociclib etc were available to me during this time mainly because they weren’t approved and also I am a long way down the line of treatments therefore I am not eligible to have them. This might sound awful, the fact I’ve had lots of chemo, but it’s not been as bad as it seems. They have tended to be short term whereas the hormonals are longer term and give fewer side effects. In 2018 I had a liver resection, where they remove the lesion but this was only possible at that time due to chemo having reduced the lesions in the liver to one. I then had nearly a year of no liver disease until the little uggers started growing again. Over time I have learnt a lot about my type of cancer and what treatments are available which is why I seem to know a lot (if you read my other posts) but I have also lived with secondary BC for a long time so have had that time to learn as much as I want. The statistics on google are way out of date, in fact they are the same as they were when I was first diagnosed with bone mets in 2008 so I wouldn’t look too far into them, they are very scary! According to them I should have been dead 11 years ago!
Nicky x

BobbieLew
Member

Re: Bone mets - please join in

Hi Nicky,

apologies for hijacking your comment, I guess Im just after some positive news/inspiration and reading this comment suggests you had liver mets since 2013? I’ve just found out it’s spread to liver as well as bones and the stats don’t make good reading so this is reassuring. What treatment have you had if you don’t mind me asking? 

SecondarySister
Member

Re: Bone mets - please join in

Hi Nicky,

 

Thank you for sharing your experience. I know every person's experience is different and one shouldn't compare, but I cannot tell you how comforting it is to talk to other people! It's so inspiring!

 

She does have a 1cm lesion on her liver, but it is quite small and it is only the one and they didn't seem too concerned about that. We are lucky, because we live so close to The Christie which is an outstanding hospital for cancer care.

 

My mums cancer is lobular and estrogen positive. We will find out more this afternoon.

 

Thank you for your response!! 🙂 I hope you are keeping good and well.

nicky08
Community Champion

Re: Bone mets - please join in

Hi Secondarysister

I agree with Stoney, a lot, if not the majority of us (on this form) don’t seem to have issues with their bone mets. Obviously some forum users do have situations where a bone collapses or breaks spontaneously but this does tend to be pre-diagnosis as once a diagnosis is made a treatment is given that stops the bones getting into this situation. I am not saying that some of us don’t experience pain but the majority seem to cope well. This is my experience of being a member of the forum for over 12 years - and I have read many hundreds of posts in that time. 
I would hope that once your Mum gets a treatment plan in place her bone mets won’t get any worse fir sometime at least. And that she is pain free. Since 2008 when my bone mets were 1st diagnosed I have been pain free, despite considerable spread 5 years on from that which was mainly due to insufficient monitoring allowing them to spread so much before the hormonal treatment I was on was changed. Since 2013, when liver mets were also found, my bone mets have remained stable despite the liver mets changing.
Good luck for your Mum today. I’m sure once her treatment is decided upon you will be back here to ask any questions, someone is bound to be on the same treatment.

Nicky x

Stoney
Member

Re: Bone mets - please join in

Hi secondary sister sorry to hear about your mum.. and best of luck for this afternoon.. I was diagnosed with primary breast cancer 2003, and roll onto 2019, where by accident I found out I was stage 4 metastatic in my bones.   I had no issues prior to this with my bones, and they believe I have had this for quite some time, gone un detected and unnoticed. Now unfortunately I am stage 4, but to be honest I still have no problems with my bones, just the odd ache.. I'm trying to be positive, but it's very difficult. I'm on monthly hormone injections, bone injection and chemotherapy drug. 

Best of luck for this afternoon.  

SecondarySister
Member

Re: Bone mets - please join in

My mum has her first appointment this afternoon with the breast cancer oncologists. I'm just so anxious! Instead of working, I have been reading the Bones mets thread for hours !!!!

 

There are so many positive stories out there which completely lift my spirits, but I am worried that my mum's bone mets are in quite a lot of her bones. I guess i'm a bit in denial to even ask this question, but does it make a difference? If it is in the bones, does it matter if it is one bone or five? Presumably when they start her on treatment it will target and zap / treat them all ? If it is in the bone, its in the bones.. I suppose the most important aspect is how well she responds to treatment ...

 

I'm still in a state of shock at how it could have gone undetected for so long for it to be so extensive in her bones. Any comforting words in this moment will be gratefully recieved!