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Bone mets - please join in

Carolyn52
Member

Re: Bone mets - please join in

Last year on Xmas eve I lost a front tooth filling ..my lovely dentist fitted me in and just replaced the filling very careful ..no injection or drilling. ..it took 3 months to settle so I think we have to be very careful.

It's tricky as we are all older and haven't got perfect teeth. .

Hugs xx
silverlining
Member

Re: Bone mets - please join in

Last year I was plagued with dental work. As I'm on Denosumab, it was 8 weeks prior and 8 weeks after...absolutely no injections. There is a considerable danger of jaw necrosis....what a ghastly thought!!!!

Anne30
Member

Re: Bone mets - please join in

Thank you. That is exactly what my dentist said. I will also double check with the hospital when I go. Thank you. You are a great source of information!
windflower
Member

Re: Bone mets - please join in

Just to let you know that I have had a few "ordinary" fillings whilst I've been on denosumab.  My dentist assures me that is fine as they don't go near the bone.  Extractions are a problem as the tooth obviously comes from the bone and "implants" are a definite no-no.  So denosumab doesn't need to be stopped for all dental procedures.  I dread to think what happens if you need an extraction.  Touch wood, I haven't had that problem.  I've been taking denosumab for over two and a half years.

Windflower

Anne30
Member

Re: Bone mets - please join in

Thank you. I’ll certianly check!
funnyface
Member

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My oncologist said 8 weeks before or after an injection of bone juice for dental work.

Anne30
Member

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Will do! I’ve booked it all in for the first available date. Thanks to all of you this now seems a little more doable!
Kate21
Member

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Hi Anne, I would definitely get a second opinion on that! From what I’ve read and been told at my hospital and the Maxillo Facial team I saw, you would be better getting any dental work done asap, before your treatment really gets underway. Admittedly what I needed doing was, as I previously said, going right into my jaw but if there’s any risk why wait? I would at least check again with your Oncologist. Kxx

Anne30
Member

Re: Bone mets - please join in

These posts are so helpful. I had no idea that is was possible to manage bone mets for so long. You ladies have helped a lot! I am trying to stop blaming myself. I am on chemo (palciobib?) and hormone. My dentist was very dismissive of the hospital’s concerns about dental work. I need some fillings and he said it’s fine to have them while having the bisphosphonate injections. Thank you again Anne
Kate21
Member

Re: Bone mets - please join in

Windflower and Zazmatraz, will just say the dental work I had to have was very close to my actual jaw which may be why the time I was advised was longer. Basically my dentist retired and I’d never seen his successor before when I had a check up before starting Denosumab. Think the problem tooth probably should’ve been X-rayed then but wasn’t! Kxx

Kate21
Member

Re: Bone mets - please join in

I agree with you Lindyloo, my mammogram was still clear the day they found cancer cells in my lymph biopsy! Having had clear mammo’s was a major reason my previous GP didn’t refer me. Yes, they can work for some but my Onc told me that what happened to me was by no means a rare occurrence. I only got a diagnosis because I persisted and said I knew something wasn’t right! Kxx

Kate21
Member

Re: Bone mets - please join in

Hi Windflower, that’s similar to what happened to me. My hospital said I had to,leave it 3 months either side without having Denosumab, I’d only been on it 6 months so got a bit panicky about not having it for so long but my lovely Oncologist explained it all to me and reassured me it would be fine to stop. She was right as at my next scan everything was still NED, and at that point I’d missed 7 consecutive injections! Kxx

Kate21
Member

Re: Bone mets - please join in

Zazmatraz, I was NED when I stopped having the Denosumab, ended up not having any further injections for 7months and was still NED on my next scan. Also, if you do develop osteonecrosis you’ll most likely have to stop the denosumab completely! Kxx

Kate21
Member

Re: Bone mets - please join in

Hi Zazmatraz, definitely go with what your Oncologist is saying! I had to have some dental work, stopped injections 3 months before and left it 4 months after before resuming them and still had problems! I ended up having to see the Maxillo Facial team where one said they would’ve advised leaving it 6 months before restarting the injections. My hospital had said 3 months but I’d read about what could happen so didn’t book to have another Denosumab until 4 months afterwards, yet still had a problem. Fortunately it’s now resolved. My Onc had already told me that denosumab stays in the system a long time and therefore not to worry about missing one. The reason you have to stop is it stays in the bone and can lead to the area where you have the dental work either not healing or breaking down and can result in osteonecrosis of the jaw. Kxx

 

 

windflower
Member

Re: Bone mets - please join in

Hello Zamatraz,

Windflower here again.  It's funny, but I had a dental check-up last week and I've got a crown on my 2nd molar on the left lower jaw.  The dentist did an X-ray and found a hole in the tooth and decay under the crown.  The crown has to be removed, the tooth filled and a crown fitted again.  I had to contact the oncologists and had a reply yesterday.  My last Denosumab was last Tuesday and I can have the treatment but have to have it no less than four weeks after my injection, and have my next injection not less than four weeks after the treatment.  So my next denosumab injection for three weeks time has been cancelled and an appointment for the dentist made instead, then I'l have my next deosumab four weeks after that.  So I'll miss one denosumab injection.  I should think it's fairly OK to miss just one.  Rather that than problems with my jaw!  A coincidence that you are having problems at the same time!  Good luck.

Windflower

zazmatraz
Member

Re: Bone mets - please join in

Hi.  I have secondary breast cancer in bones and have denosumab injection every 4 weeks.  I have had about 12 lots now.  I had a root canal treatment in Jan/Feb whilst on it and now need another (the first part is done with temp filling in and awaiting dental hospital appt to finish.  My oncologist has suddenly said I shouldnt have the next injection because of this (due in 2 weeks now).  I dont agree with him since a) I am not currently having dental work and b)why is it an issue now when it wasnt 2 months ago.  My real question is has anyone had a break from denosumab (at the moment itll be an 8 week gap) and does anyone know if a break/gap affects its success?  Thank you.

windflower
Member

Re: Bone mets - please join in

 Nicky08,

How I agree with you about being asked how you feel.  I too feel more or less OK.  My secondary cancer only came to light in March 2015 - 20 years after my primary in 1995.  It came to light because it had blocked my bowel and I had to have an ileostomy.  Later they realised I'd got multiple bone mets - which don't give me any symptoms.  Apparently they could have been there quite some time.  So what symptoms do they want you to report?  My symptoms weren't suspected to be because of breast cancer until I had all the scans, etc.  

I haven't had a CT scan since last May and they seemed quite happy not to do any, unless I reported "symptoms".  However, they did agree that I could have one in May, 12 months after the last one.  Hopefully everything will still be "stable", but I want to know whether it is or not.  My treatment is fairly benign.  I take Anastrozole and have Denosumab injections every four weeks.  I had FEC chemotherapy after my secondary diagnosis, which seems to have done some good.  I do get pain in my hands from arthritis, especially when I wake up in the morning.  Anastrozole can cause joint pain apparently.  My hair is also quite a lot thinner than it used to be.  But all in all, I think I'm very lucky up to now.  I don't know anything about all the drugs that other people seem to be put on.

Anyway, my best wishes to all, especially to Anne who has had such a shock recently.  I feel so much more fortunate than all the fairly young women that this awful scourge has effected.

Windflower

LYNDYLOO
Member

Re: Bone mets - please join in

Afternoon ladies

Just to add to the mammogram debate. I have no faith in them what so ever.

Had first one nearly 53 second one nearly 56. Both came back clear. It was only just over a year later I noticed an indentation in side of breast. I was diagnosed with lobular breast which does not show up on mammograms as it starts off as soft tissue. Nobody tells that when you go for mamammgrams.

In August 2009 was told it had already spread to bones so it must have been there when I had mammogram Jan 2008.

Welcome to all the newbies.

Linda

Moijan
Member

Re: Bone mets - please join in

 
nicky08
Community Champion

Re: Bone mets - please join in

Hi Millie and welcome to the forum. Some wise words from someone coming to terms with their recent diagnosis. Because I have been living with bone mets for over 10 years now it’s all very easy for me to say ‘ allow yourself time to adjust etc’ because I am so far down the road from that awful time when I found out it had spread, the shock etc is not so extreme now. However someone recently diagnosed, and treated, can say/write a bit more in the moment.

As to doctors , nurses and any other trained professional telling you it won’t have spread, Anne, I find that so bad. How do they know. Are they a walking MRI scanner? It’s really not helpful as it can build up expectation and hope that it won’t be SBC only to then be told it definitely is. I’d rather anyone in that position took a more measured approach and not be fairly dismissive of our worries. Rant over! Btw as I’ve been pretty much asymptomatic since having mets diagnosed I’m always wary when I’m asked ‘how do you feel’ Well actually I feel pretty good but that doesn’t tell me what my current situation is does it?Just show me the scan report, that will tell you how I feel.

And, yes, once mets are diagnosed there’s no going back but ladies live many years with mets. I for one have had 10 good years, ups and downs but still good, I have a friend who is at least 15 years living with SBC and both of us had mets before any of the newer more targeted treatments were available. 

It is a difficult time after your diagnosis and you may have to search out other coping techniques or speak to your BCN or oncologist about what might be available for you. Each of us is different so it is very difficult to suggest what is best for you but try to get help if you need it as you shouldn’t continue feeling so bad about things.

Nicky x

Anne30
Member

Re: Bone mets - please join in

I hope so too x
Moijan
Member

Re: Bone mets - please join in

Hi Anne

 

thetreatment can make us feel like you describe....my treatmentis having a similar effect, not of feeling worthless, as we are ALL worth a lot. Everyone is.as I’m sure people will be quick to tell you..... but I’m feeling pretty sad and anxious..hopefully will pass

 

m

Anne30
Member

Re: Bone mets - please join in

The broken back sounds really painful and I hope the treatment helps you to be more comfortable x
Anne30
Member

Re: Bone mets - please join in

Thank you for sharing this with me. It was brave and helpful. I was a very sociable person but I don’t feel able to see people. Now as I blame myself for all the pain I’m causing. I even blame myself for the trouble the doctors are having. Everyone told me too that it wouldn’t have spread. The schoo nurse included. Clearly they were just being nice. I have three small areas on the bone but at the first consultation the nurse kept saying that once it’s out it’s hard to contain. As you can see I’m not being brave and positive I’m just allowing myself to be overwhelmed by feelings of regret and worthlessness. My partner says I need to believe that the treatments should
work. I’m having chemo bone injections and hormone therapy. Thank you again for your brave post. The ladies here are knowledgeable and encouraging. Best wishes Anne
Carolyn52
Member

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Funny face

I can't believe it but gave my easter Egg to hubby yesterday ..up to a few weeks ago I would have had it under 24 hour guard ..mine all mine !! Seem to fancy savoury stuff more now.
Seems there is a bonus to E and E after all.

Snow ? Can't believe it but we have had too much rain here but promised sunshine for a few days now ! ☺☺☺☺☺
Carolyn52
Member

Re: Bone mets - please join in

Hello Julie

Welcome to the forum ..I hope you find lots of support and kindness here to help you through it all. It's a real kick up the rear end to get dx with secondary bc ..somehow with primary I just got on with it but this time round. .it's different .
Hugs xx
funnyface
Member

Re: Bone mets - please join in

Carolyn, It is a killer that E & E ruined chocolate for me, too. Today was income tax due date in the US. Then it got cold and started to snow. Luckily no accumulation.  Winter doesn't want to give up. Trees are blossoming, though! FF 

Millie18
Member

Re: Bone mets - please join in

Hello Anne, this is my 1st post on this forum but I wanted to share my story with you. Like yourself I jumped straight into stage 4 BC with whole spine, ribs, pelvis, hip and skull mets. I felt guilty as I hadn't gone to the gp earlier and my dense tissue was only discovered at a routine mammogram though I was told it had been there a long time. I put my back ache down to my job and rib pain down to a strain. I often wonder would it have made much difference if I'd took more notice of my body instead of 'getting on with it'. But hindsight and regrets are no good. After being told the chances of my BC spreading would be very unlikely and rare to hearing the bone scan results was a roller coaster. My diagnosis was in Nov 2017 and I have completed 6 rounds of EC chemo with luckily few side effects and subsequent bone scans have shown it chemo has been effective. I have recently started letrozole and palbociclib and continue with denosumab injections and Adcal tablets. I do ache and suffer hot flushes but am doing pretty good and am enjoying make g the most of life. I do get a bit fed up and angry occasionally but try to be bright and positive and look on the bright side - like my hair beginning to grow back!! I meet alot of friends and plan trips out, meals out, coffee catch ups and mini breaks and see as much of my family as possible and value all my friends and family and other sufferers whose support it is invaluable. I hope you are able to get through your bad days and enjoy the good ones. X
Sarahlew
Member

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Hi all
Yes looking forward to some sunshine🌞. We went to the lake district in our motorhome last summer it's so beautiful there - never been to the peak district one for the list though. Hoping to tour Europe in the van in june pending scan results.
Have a great time! X
Carolyn52
Member

Re: Bone mets - please join in

Hello tatyana

Hope the cape works for you ..lots of ladies here have been on it ages ..yes we are promised sunshine for the next 3 days here ..for some reason warmer weather does help the achy bones and gives everyone the feel good factor to do more.
Hope u enjoy your time in peak district with the camper van ..it's good to get away. ..

Hugs xx
tatyana
Member

Re: Bone mets - please join in

Hi Carolyn! So no appetite for choc is a good thing? That's what I call looking on the bright side!
Here in Oxfordshire it's dry but grey and windy and really quite cold. I hope they are right about this heatwave, we're going to the Peak District for a few days in the camper van and could really do with some sun!
I'm still waiting for the cape to show any signs of working. Not optimistic as my aches and pains seem to be getting worse, though nothing that paracetamol can't fix. Next consult with onc is 2may, then we decide whether to give the cape a few more weeks or move on to gemcarbo. Has anyone here had that?
Onc is very practical and has made it clear that if I get any worrying symptoms before 2may, I should let them know straight away. It feels quite reassuring, like a safety net under the high wire. But I'd still prefer not to fall!
Everyone, enjoy the sunshine when it comes!
Carolyn52
Member

Re: Bone mets - please join in

Hello ladies

See this thread has sunk down the list so thought I would pop in and say hello to bring it back up.

Hope everyone is coping with scan results and treatments ..the bain of life with secondaries but hey hoo ..we cope !!

Nothing much happening here in Devon today ..just rain and more rain....had visitors earlier so got the fondant fancies out !! When did they get so small ?

I'm on week 3 of the devil pills. .E and E. .but it's doable and the bonus ..no appetite for choc or McDonalds so hopefully I will be less of a heifer in a few weeks! !

Hugs xx☺☺☺
Moijan
Member

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Yes, not sure if this was to do with my secondary  or not but I freaked out and threw the tv remote at the wall....it broke of course!

 

one day soon after, I was going to a hospital appointment and quickly got ready, picked up the tv remote, leaving my keys on the table and rushed out...locking myself out!

 

oh wasn’t ecstatic either time

 

 

Mx

Carolyn52
Member

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Oh pippin we all have to stamp our feet and let it out ..my way was a bit different when I got primary dx. I was crocheting a cot blanket for my grandson but it became my focus ..I just sat and crocheted and crocheted the damn blanket night and day ..it ended up so big ..a elephant could have snuggled up on it and probably his friend as well!!
Hugs xxx
Phoebe4
Member

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The laughing yoga sounds great Tatyana! I love yoga and meditation and find it a life saver!
Great free app called Insight Timer with loads to choose from.
Enjoy your coffee outing Anne. Friends have kept me sane on this journey!
Hugs x
Anne30
Member

Re: Bone mets - please join in

You are so right and I love the supermarket trolley story. I can’t seem to do anything at the moment but I promise to try. I am meant to be meeting friends for coffee this morning. The yoga sound fun.
tatyana
Member

Re: Bone mets - please join in

Pippin and the supermarket trolley-- oh I do wish it was captured on video! Thanks for the laugh, Pip, it's the best medicine. And you know, the smiling thing actually works, if only for a few moments. I'm signed up for a session at the village hall next month of something called Laughing Yoga. Sounds promising, don't you think?
Anne, anything that makes you feel good, just do it. Buy yourself some flowers, go out for a coffee, go for a walk, watch Mamma Mia, whatever will give you a few moments of joy, distraction, or contentment. Every little helps.
Phoebe4
Member

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Love your reply Pippin!
Sat having my steroids as early as possible so they don't keep me awake !
Thanks for making me smile at 5.30 am! ! Quite an achievement!
Did you know Anne, that actually forcing a smile and breathing slowly can fool your mind into thinking all is well even when you feel like .........!
Worth a try!!
Or we can wait for Pippin'so next post!
Hugs and smiles all xxx
Pippin
Member

Re: Bone mets - please join in

Hi Anne

S _ _  mamograms! I had mine regular as clockwork and additional ones too, all normal. My primary in 2013 was an "interval one". Entirely my fault it got so big before I noticed it. Mamogram did pick up my 2nd primary (that's great isn't it) just when I thought I might have beaten the first one. Mets discovered at time of diagnosis of the second primary were actually mets from the first primary.

My coping mechanism has been distraction, work, work, work - no time to really think. At the bleak time of mets diagnosis I did have a 60 second meltdown in supermaket when I screamed my head off and beat hell out of a supermarket trolly (I can vouch that they are utterly indestructable!). I avoided the place for a whole week but then went back 'cos it is my local. I can laugh about that now.   

Pippin

Butterflyflyfree
Member

Re: Bone mets - please join in

Hi Anne, hope you can see by now you’re certainly not alone!
I had a mammo at 49 and then at 51, both clear then found a lump 12 months later, with a bone met picked up belatedly on a CT scan. So have often wondered in my months of treatment whether it was missed on the last mammo. But it is what it is. I still haven’t processed my diagnosis and am waiting for counselling to help me. In the meantime I’m just going through the motions of treatment - 8 months down, 6 months to go then another scan to see what’s going on.
Hugs to you and all the other lovely ladies on here. Xx
Jobey68
Member

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Hello Anne, I don't have secondary's but just wanted to add that my mammogram was clear at diagnosis too, my breast cancer was found via ultrasound and I was told it could have been 5 years before it was detectable on a mammogram which means 3 years on I could still be walking around none the wiser as I'm only 49 and not in the screening program yet. 

I see you have lots of support from our lovely ladies here and I hope once you are over the shock of your diagnosis you will find the strength with their help to move forward. Xx Jo 

Anne30
Member

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Thank you.
Kate21
Member

Re: Bone mets - please join in

Anne, it is very early days for you and it’s natural that you feel like you do. Believe me I was in a right mess when I first found out! What I was trying to say was even if you’d had your mammogram those years ago, it doesn’t mean it definitely would’ve been found, tumours have to be a certain size to be detected, same goes on CT scans. Stay strong, Kxx

Anne30
Member

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I am trying so hard. You ladies are so good at it!
Kate21
Member

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I’m another who was diagnosed straight to stage 4. I had been going to my GP practice for around 4 years saying I could feel something, not every day, but things didn’t feel right. I was already having mammograms which were clear, and they still are! Eventually after I insisted something else was done, I was sent for an ultrasound scan, that showed a small cyst, which I queried but was assured there wasn’t any blood supply and it was just a cyst...I will now never know if that was right...as I still wasn’t convinced I booked to see a different GP at the practice, she again couldn’t feel what I could but said she could see I wasn’t happy so sent me to breast clinic, and I finally got my diagnosis! 

I’m just saying that sometimes even tests are inconclusive, my mammogram was still clear on the day I was seen in breast clinic because of that I think the Radiologist only did the biopsy because I was there but again, he was sure it wasn’t anything to worry about! Thank goodness he listened to me and did it!

I’m often asked if I’m angry about it because 4 years is a long time to be told there’s nothing wrong with you, when there clearly was, but what good would that do? Yes, I have moments of what if’s but.....My Onc tells me that clear mammograms, when you have bc, are not as infrequent as you might think. My GP practice is also a very good one, it was just bad luck! 

I did all the examining and testing, so please try not to beat yourselves up and stay positive! Kxx

Anne30
Member

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There are a lot of treatments now for mets and I am trying to be hopeful. I am sure that the best thing would be to live one day at a time with a hopeful heart but it is hard to do
Anne30
Member

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I feel for you and hope very much that you find the peace which I’m finding so elusive. We have no cancer in our family either. My lovely mother in law is 86 and my parents are 80. They are so sad. Try to rest and find peace x
Hayeswen
Member

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Hi Anne

Like you I was straight in at the deep end never had a primary just a pain in my leg which turned out to be sbc. Anyway 1 yr in I am still angry as never had an offer of a mammogram you have to be 52 where I live and am now 52, can’t wait for my screening letter! Anyway it is an up and down journey once you get a result and treatment plan in place you feel better as there is hope. If it turns out not to work you get all the anxiety again same as waiting for results. All I can say is our overstretched nhs do a fairly good job where I live hope your will too. I work full time as much as I can and try to do as much as I can. My husband refuses to talk about the inevitable or bucket lists as he gets as anxious as me. Good job our kids are there to hold our hands. I say to my parents every day why me when they are fit and healthy and we have no history of cancer in our family but can’t change anything just carry on. You will have good and bad days but this forum helps . It may also help you to meet others in the same position if there is a meeting near you . Chin up . It will get better to cope with . Wendy x
Anne30
Member

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Thank you. It’s much appreciated x
tatyana
Member

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Anne, we all understand. We're thinking about you and sending you love.