Bone mets - please join in

[Anne30]

Yes this thread has been helpful to me in the past. It would be good to see it back. I’m still feeling fine and working full time a year on from de nova diagnosis. I always loved the sea but am relishing it more and more. The last year certainly hasn’t all been bad. I took the advice to enjoy things: the sea, the sunshine, family x

[funnyface]

Trying to see if we can get this thread started up again. We used to all just hang out here for a chat. Miss those times. FF

[kirky_68]

Hi Rusty

Re ESA - when/if you finish work you can claim based on NI contributions as long as you've paid enough stamp in the preceeding 2 years. It's not means tested so hubby salary/savings don't matter. Depending on circumstances can be up to £110 per week plus you will continue to get your stamp paid towards old age pension.

Would buy a couple of text books 🙂

[LYNDYLOO]

Hi all

I don't tend to post much now on bone mets just thought I would and I give some encouragement for the newbies. 

I was diagnosed with breast cancer and bone mets at same time August 2009 had mastectomy  chemo and rads. Finished treatment April 2010. For me I went back to work June that year. It was a gradual return to work. I reduced my hours to 31 hours per week which I carried on until I was 63. By going back to work took my mind off my situation . I have had various treatments over the years . Letrozole for 4 years. Everolimus and extermestane for 3 year 8 months . Cape then pacitaxil now on tamoxifen . Can't believe it will be 10 years . 

Hope it helps. 

Linda

[Rustyharas]

Anne, no I didn’t feel bad, please don’t think you said the wrong thing.  I accept quite happily that people are different, I just meant I couldn’t  imagine, myself, being able to work.  

Now I feel bad about what I said.... we could go round in circles with this.  Please accept a big hug from me xxx

And thank you Nicky for your reply too.  I will maybe  look at esa at some point but we may have too much savings, we’ve tried to put some by for various things, but I guess this is one rainy day we could use it for.  I am sure there are people for whom finances are more of a problem. I have a husband with a good job, I shouldn’t complain. 

Talking of husbands mine stayed up with me last night through a bad pain session till 3am. We played that game of who can remember the names of actors and characters on old tv programmes.  We went from Pride and Predjudice to Banana Splits through Bagpuss and Thunderbirds. 

Believe me, I know how lucky I am in this area at least 🙂

x

Rusty

[nicky08]

Hi becket, I don’t think there is a ‘classic’ set of symptoms that warn you of mets (secondary BC) so it’s difficult to say what your ache is. It is worth having it checked out if you’re really worried so it’s good that your BCN has organised that for you - even though you probably don’t want it! We all know what that feels like, we call it scanxiety on here!

rustyharas, again, a full body scan is a good idea but comes with its own scanxiety. And, again, yes we all have those wishes of getting some good news for a change, who wouldn’t? As something that may help I am currently on much better shape physically and mentally than I was 6 years ago when I was told my bone mets had spread to my liver. I actually have less BC in my liver than I did then and my bone mets have remained stable. I was also suffering from heart failure, caused by FEC chemo, but have had amazing treatments through the NHS which have sorted out my heart so it’s back to normal and removed my liver mets (I had an operation last year to remove them) so it is possible that it doesn’t always get worse, sometimes it gets better. As to whether you work or not that is obviously down to the individual. Anne30 is doing great after the huge shock of her diagnosis last year. I also worked through chemo for my mets some 11 years ago but my job allowed it and I coped well with the chemo side effects but we’re not all able to. I did give up work when my liver mets were diagnosed as I couldn’t continue with the type of job I was doing. It is worth considering looking at benefits such as ESAif you have to stop work or cut back on hours. These can help with financial gaps caused by not working any more and you can usually get advice from MacMillan about if you’re entitled to claim.

Nicky x

[Anne30]

I didn’t mean to make anyone feel they should work or feel bad because they can’t! I’m on Ibrance which is oral chemo and so far the side effects have been okay but that could change any day. I was trying to be encouraging - suggesting that you can carry on with things. Sorry if it came out the wrong way! My work have also been very accommodating and have minimised the stress I’m under. I should stick to saying that I sympathise with you  and wish you well (which I do)

[Rustyharas]

I’m in awe of people who work through treatment Anne - chemo wiped me out for the full 12 weeks and for months afterwards. And a year after that before I went back to work. 

I’m considering my options re work.  I never went back full time and may cut it down some more.  We are about to transfer to a new system which I have to implement but I could do without the stress (I wasn’t looking forward to it even before this).  I’m going to have to negotiate that one I think. We could manage on one salary especially when the mortgage finishes next year, but with two kids at uni it would be a stretch and make a difference to how much we could support them. 

But I'm probably thinking too far ahead... 

rusty

[Anne30]

I recognise that feeling. I was diagnosed with primary and bone mets nearly a year ago. I couldn’t read eat sleep etc. I had two weeks off work and started treatment. I’ve been back at work every since. I’m coping with the treatment and am in no pain. Obviously scans make me anxious but I’m enjoying life as best I can x

[Rustyharas]

Hi Nicky thank you so much for your long post. You are right I just want to start treatment.  I’m going to have a full body mri, which sounds like it’s a good scan from what you said.  When my gp told me it was mets I cried because I might have only 10 years, now I’m scared because the scan might show it’s worse than that.  Is horrible waiting but I don’t want bad news - I only want good news (is that so unreasonable?  Come on docs, tell me something good)

Original CT shows mets in sternum and a couple of ribs, one vertebra in the spine and the lymph nodes in the chest.  

Every twinge is a worry and the stress has given me a headache which is causing me even more what ifs...

breathe!  

Got me some Epsom salts this morning, gonna go home and have a bath.  

Can’t concentrate, can’t read, can’t eat... so grateful for this space to sound off

x

rusty

[Rustyharas]

Hi becket I am sure everyone is different but my bone pain came and went, one night I had a pain in my chest like I’d been kicked by a horse, that was when I went to the gp, but I’d also had smaller pains I had ignored as just aches and pains, which may or may not have been early signs. I am where I am, I try not to think about it. X rusty 

[Beckett]

Hi ladies

I finish 5 months chemo at the end of Nov 18 and had right mastectomy on New Years Eve. It was a grade 3 triple negative tumour.

All was good but I'm sufferring with heavy aching in my right shoulder. BN is arranging a bone scan but really worried.

What does it feel like if it has returned? Am I worrying over nothing?

Becks x

[nicky08]

Hi rustyharas

Sorry you have to find yoiurself in the place that none of us want to be in.  Unfortunartely breast cancer is a crafty little bugger and can come back even when you've been given an excellent prognosis after treatment for primary BC. The same thing happened to me. Great prognosis with primary, low grade, found early, no lymph node involvement.  Hey presto nearly 5 years on from that I found I had bone mets.  I just wanted to add some support as it is a horrible time that you are going through, waiting to find out what happens next.

You will find on this part of the forum that many of us are living well with bone mets, I'm currently coming up to 11 years with them (as well as now having liver mets although they are a different story).  I think this thread has gone so quiet due to the change in the forum - no one can find it! And when they do our posts get lost, grrrrr.  There are many of us out there with bone mets and another reason this can go quiet is that unkess things have progressed or changed we often are not posting, and tend to do so more when a change int reatment is needed.

One thing you will find out is we do not seem to all have the same treatment on initial diagnosis of mets. This will be down to our receptor status and also sometimes down to our oncologists view.  It can be chemo or 'just' hormone treatment (if we are hormone positive) or a Herceptin based treatment if we are HER2 +. Sometimes targetted radiotherapy is also used but this tends to be when there is significant pain.  Most of us have had a bone scan which does give a clearer 'picture' of our bone mets but quite often this isnt repeated and can be used for diagnostic ourposes only. You're right about CT scans not picking up very small mets, MRI's are more accurate and I'm not sure about PET scans as my hospital doesn't use them.  Most often, along with your chemo/hormone/herceptin you will also be given a bone strengthening treatment.  Most of us are on the newest drug, Denosumab, but others are on infusions or even tablets, agsin, this will depend on your oncologists choice to some extent.  Also, as this is your first diagnosis of mets (and therefore first line treatment for mets) you may be given additional, newer drugs alongside whatever treatment you go onto.

Almost all of us found that once we had a treatment plan in place we were more able to adjust and cope with our secondary diagnosis.  Take your time it is a huge shock for you and your family.  Please come back on here with any questions you may have and to get support from fellow SBC ladies.  Hopefully some of the other longer term members will come along to offer their advice as well.

Good luck

Nicky x

[Rustyharas]

Thank you gaybar,  on way to see oncologist now.  Feel sick.  Husband is worrying about parking... 

[gaybar1969]

Just to add. I can eat normally but have to drink plenty of water.

[gaybar1969]

Hello,

Yes I have thorax and abdomen CT scan every three months with contrast. Along with full blood count for, bone profile, liver and rental. Wishing you all the best.

[Rustyharas]

Thank you people.  So you both had CT scans, all good information, thanks

and no i don’t think I did anything wrong, lovemama, in fact pre the original diagnosis my friends would say I was the healthiest person they knew.  Vegetarian for years, bit of a health food nut in fact, exercised, didn’t smoke..  even more so after diagnosis.  

(I did forget that I wasn’t supposed to eat , on the morning of the CT I went and made myself a piece of toast on autopilot... and then had an hour’s agonising about whether they were going to tell me I couldn’t have the scan.  But it was ok.)

I havent told my husband yet but it’s going to be no sugar, no alcohol, and even less processed food in this house... at least that is something I can control.  He already has to get his meat fix in on business trips, now it’s going to be chocolates and crisps too, haha.

Just realisised that sounds terrible.  No I don’t forbid meat in the house, just how we’ve always managed it.

Rusty

[lovemama]

This is my second time trying to post. The last one was lost. 8-(

Hi Rustyhares.  I was dxed bone met in Aug last year. A dot shown on chest x-ray. A leison shown on bone scan. A leison with ~1.5cm (forgot the exact figure) desruptive on both vertex shown on chest CT scan. Having 8 cycles chemo. CT scan after 4th cycle, 2 leisons on adominal linings disappeared and sternum is healing. Requested radiation and was rejected. My current oncologist told me my previous oncologist (left the hospital after my 5th cycle) believe the chemo is able to clear my last leison on sternum. No sharp pain but  dull shoulder pain and come-and-go chest pain. By the way, did you do something wrong (like me, took high dose bee propolis+soy milk for 1 month) before the CT scan 

My first diagnosis was in 2011. At that time, my oncologist told me  tumor marker test was showing ZERO.  

PS. in Hong kong , one oncologist consider cure if no recurrence in two years for triple negative, 5 years for ER+ HER-, 10 years for ER+ HER2+.

[gaybar1969]

Hello,

I come on here from time to time for a look or when something is bothering me. I was first DX in 2009 age 40 stage and grade one. It came back in 2016. Ultra sound, biopsy, CT scan, MRI and bone scan found out it had come back. A huge mass at the back of the sternum, one in my neck and in-between the 5th and 6th rib. Inoperable but treatable. Six months of chemo and the huge one at the back of the sternum and neck NED and the one inbetween my 5th and 6th rib has shrunk and stable. CT scans and blood every 3 months show all is stable and letrozole is doing it's job. I'm nearly 3 years on from secondary DX. Hope some of this is useful. Wishing you all the best.

[Rustyharas]

 Doesn’t seem like much activity recently,  anybody still on here?  Just been told today results of chest CT that I have bone mets in my sternum (went to my gp with sharp  pain in chest, had it a few times, in various places, came and went.  Didn’t believe it could be cancer) 

appointment with oncologist tomorrow, I’d like to know what scans people have had to start off with  and why - I read that CT scans don’t show tumours smaller than 2cm, is that right?  Does  a PET  scan show up more?  

I want to make the most of my appointment and I’m the sort of person who feels better the more information she has.  

Oh and I’m 54, diagnosed with BC originally 2010, chemo, rads, tamoxifen.  Told me I was lucky, I’d found it early.  My breast surgeon said I’d still be here when I was 80.  (This is maybe one question I don’t want answered at the moment.)

And I haven’t even begun to think about how I can tell my children, my eighty year old mother and my two siblings.... my best friend who was a fabulous support last time is dealing with her sister having terminal (secondary bone) cancer at the moment.  I do feel a bit alone...

[Magick]

Please, i have one more question. Do you know, why meta was not seen on normal lung RTG, but PET/CT show something on lungs?

[Magick]

Thank you soooo much bonareinsis!!!!! I tried look internet, but i didnt manage to find so great picture.

[bonariensis]

There are two sciatic nerves, one on each side which run down into each leg

[nicky08]

Hi

Just another thought, late at night for me as I usually read the forum earlier in the day! One of the nurses who have me my injection the other month mentioned the sciatic nerve and how she dreads hitting it when she gives the injection so makes sure she gives it quite high up. Maybe your pain is related to this? I seem to think the sciatic nerve is on the right hand side but don’t actually know for certain.

Nicky x

[Magick]

Thank you Nicki and Marmeid, we try it, sides effects is also muscle pain, but funny is that is only on one side(injection both sides) and roughly week after injection for 3 days. I def check it up with onc and let you know.
Thank you all for replais, mean much and help much🍀🍀🍀

[Mermaid007]

Hi

The injection is put into the muscle at the top part of your bottom and when I have the right side done I feel nothing but when she injects the left side It always hurts a little. I would mention it to your nurse. It may be that you need to massage the area for a while after the injection. Maybe a hot water bottle on the area the night yiu have the treatment? We are all different, I hope you find a solution.

xx

[Magick]

As us like you go fitness and you pull your muscles. I will check it up with onc , but it is only one week after injections and it last cca 3 days and only on right side. Keft side is goid after injection. The pain always sort out 1 tablet of common painkillers, so hope thats not something bad, anyway i am curious

[nicky08]

Hi Majck 

Ive been having faslodex injections for nearly a year now and don’t get any pain from them. I do get localised itching and redness where the injection goes under the skin but nothing I could say was ‘pain’. As mermaids has said, where is the pain? It could be listed in the side effects which you can look up online (as you might not have been given an info sheet about them)

Alternatively speak with your onc team who may be able to help?

Nicky x

[Mermaid007]

Hello Majick,

I haven’t experienced any pain from Faslodex, where are you getting the pain? X

[Magick]

Nice evening all,
May i ask someone please, Faslodex, 1 dose, 2 dose two weeks later and now monthly. Each time it was injected 250ml in bottom, and pain came always 5.6.7th day afterwods. And ONLY on right side, left is good. Any experience?

[Anne30]

I am sorry that you have to join us! There is a lot of advice and support on offer here. I was diagnosed with bone mets in April at the same time as my breast cancer diagnosis. I was very shocked and cried a lot. I'm on Ibrance Anastrozole and Zometa. Scans have been encouraging and I am working full time and feeling fine. It's not easy but I have got used to the regime and I manage not to think about it all the time. Best wishes 

[CAT123]

Morning all

I am new to this..  was told yesterday that I have some spots on my liver and on my spine and pelvis.  I hurt my leg  back in Oct which they said was a muscle strain, I then fell 3 times in the next few months and the pain increased.  They suspected a fracture of pelvis which turns out was true but only because a spot of cancer was on the bone and had weakened it. I was on tamoxifen although was having a few weeks off.

I only finished Herceptin last Feb (I am triple positive) after single mastectomy , chemo FECT and radio and petumazab.  They think perhaps it was there all time but so small no one could see it on scans but since treatment ended its started to grow. I started to feel a little bloated on and off the week before xmas but have had IBS in past so just presumed it was an attack.

Not sure what to expect - v scared .  any positive experiences out there please .

thanks

x

[bonariensis]

My hospital decided to try getting patients to do their own denosumab injections at home, it was to be delivered to my home. I was not keen and asked if my GP practice could do it but was told they were not licensed to do it. So much for care in the community! Have not heard any more. Usually it doesn't take very long and when my hospital appointments were quite spaced out it was quite reassuring to see a nurse regularly. I am going onto 6 weekly injections now to coincide with capecitabine appointments.. Had a lot of bone pain after last injection so am pleased they will be less frequent.

[pea]

Thanks so much Nicky. Your reply has been really helpful and reassuring. I will keep you updated on how I get on. 😀 Phoebe xx

[nicky08]

Hi pea

Sorry you have to join us but you have definitely come to the right place for support and to ask questions.

I have been an active member of the secondary forum for over 10years now and I must say in all that time I’ve not heard of anyone having their sternum removed. There have been other surgical bone procedures such as hip replacements but not the whole sternum. Obviously there must be someone out there who has had it done but no-one has posted on the forum as far as I can remember. Therefore you may not get any advice as we tend to give it if we have experienced the same.

I would get a second opinion, you’ve got nothing to lose and maybe find out if there’s a specialist surgeon who has done this before. I recently had liver surgery and was very grateful for the fact that my surgeon (at my local hosptial) is one of the leading abdominal cancer surgeons in the county. It gave me great faith in his abilities and trusted him with his opinion about my particular case and recovery times etc as he has done the same surgery many times.

In terms of survival rates whether you have surgery or not it is of course impossible to answer. Having said that I have had no surgery or radiotherapy to my bone mets in the time I’ve had them and although they are now more wide spread than they were they have never caused me any issues or pain - and I’m still here!

Sorry I can’t be of more help, maybe someone else can. Good luck though with your decision and let us know how you get on.

Nicky xx

[pea]

Hi All - I'm new to this and would like to pick the brains of all of you amazing ladies.

I was dx with BC in April 2018 and two weeks later an MRI scan and PET CT scan showed I had a solitary secondary bone met lesion in my sternum. I had chemo (FEC-T) followed by lumpectomy (x2) to remove primary. I am currently on anastrazole and zoladex (goserelin).

I have been told by the relevant surgeons that I am a good candidate for sternum removal (and rebuilding) but my oncologist is not keen. I still have to have RT and my oncologist said palbociclib is the next stage of treatment. I am at a cross-roads because the option to have the surgery is purely down to me and as I am a rare case there is no literature to support whether removal slows down progression of the disease. I am 47 and want to give myself the best shot but it's a massive surgery and will take months to recover from.

I'm going to ask for a second opinion on this from other oncologists.

Has anyone else been in this situation? I would love to hear from you. Yikes! What do I do?

xxx

[Kate21]

Riversidedawn, my hospital recently changed to giving Denosumab 3 monthly, saying it stays active in the body for such a long time, the Maxillo Facial team I see also agree with this, obviously they are concerned re jaw issues. Both teams say it stays in the body beyond 3 months and my dentist says he’d be surprised if it didn’t stay way beyond that! I was told later results agree with this and extending the time between doses reduces the risks of onj. When my hospital protocol was monthly my Oncologist always said not to worry if I went 6 weekly or even missed a dose, so assume they have always known how it stays in our systems.

Could you ask to adjust the frequency to fit in with your other visits? Kate x

[nicky08]

Wow, Riversidedawn, that is a long time for just a quick injection. As the other ladies have said you could ask if your GP will administer it but unless the nurses are trained I don’t think they can. I have had Denosumab for nearly 6 years now and have had it at varying intervals depending on the other treatment I’m on. At present I have it 4 weekly along with my fulvestrant but have had it 6 weekly. If I’m continuing on fulvestrant (after I find out my recent scan results) I am going to ask if it can be 8 weekly. Each time I go for my injections and port a cath ‘flush’ I’m in and out within 30 mins give or take 10 mins, waiting around for 3 hours is awful so I don’t blame you trying to find out how you can get it done more quickly. I don’t think oncologists, or chemo nurses, understand that once we have secondary BC we are spending too much of our valuable time in a hospital so want to get out ASAP!

Nicky x 

[Annary]

Next Christmas it WILL be better!! Jayrand56!

[Annary]

Next Christmas it WILL be better!!

[Annary]

Yes I wish everyone here a happy new year with good results from whatever scans/ tests and good responses to whatever treatment. May this be a year of success for all.

[helen44]

Correction! Been on Denosumab for 6 years not 5!

[helen44]

Hi Riversidedawn
I have been on Denosumab for 5 years, it was licensed in late 2012 & I was put on it when diagnosed Dec 2012 so GP saying it's a new drug isn't quite true. GPs don't tend to administer it because it costs too much, I was told £150+ per injection back in 2012!! Having said that, my local hospice will give it & I know someone on this forum who self administers at home. My chemo unit & onc are very flexible as to when I get Denosumab-they tend to tie it in with whichever chemo I happen to be on so I have had 4 weekly, 6 weekly , 8 & 12 weekly. All the best with your treatment.
Helen x

[Magick]

Lovely good evening,
I wish you all clean scans, good fight, stay strong and positive in the upcoming 2019.
Hugs🎉🎉🎉

[Jayrand56]

Just joining in for a bit of support. I was admitted onto the oncology ward on Boxing Day with a chest infection; I already had breathlessness which had been exacerbated by the Paclitaxel so not good!
I’m having IV antibiotics and steroids and feeling much better, in fact there is some suggestion from the CT that there has been an underlying infection for a while.
Not sure if I will be allowed home today as there is talk of a chest drain, despite my consultant saying it wasn’t necessary last time I saw her.
Feeling a bit fed up, and trying to convince myself that next Christmas will be better..

[Benten]

Hi. I am on denosumab. I get my injection every four weeks at hospital when I am picking up my palbociclib. I can be in and out in 20 minutes but sometimes there is a glitch with the prescription or no room available. I have asked if I could have it done at the GP but was told as it was a relatively new drug it was to be administered at the hospital.  I don't always see my onc when I am in. If my bloods are OK I get a phone call the evening before to ask how I am doing. I have the option to see him if I want to but much as he is lovely and very approachable I prefer not. I find it is the best approach for me at the moment. 

[Vicky77]

Hi

I have Denosumab every 4 weeks at my dr's surgery. You should ring them and see if there is a nurse trained to give the injection. 

Vicky

[Anne30]

I am on Ibrance and Zometa and Anastrosole. I have Zometa every four weeks and also have to see the oncologist every four weeks to get the Ibrance. I’m one a low dose and one week on one week off as my white cell counts are low. Often the appointments don’t work out to be on the same day so I have to go consequtive weeks. It is time consuming but the hospital is near my work so it’s okay. I haven’t heard of anyone having it at home but this is the right place to ask. Could you try and have both on the same day? I sometimes can which is good. Best wishes Anne

[riversidedawn]

Hi is anyone on denosumab? I have to see onc every four weeks to pick up ibrance (palbociclib) and also return every 6 weeks for denosumab. Never get out in anything under 3 hours even when it's just a quick injection.
My GP won't fund ibrance so that's fair enough but I wondered if GPs will do denosumab or if anyone is trusted to do it at home? Really don't want fortnightly hospital trips.

[funnyface]

Merry Christmas! Relax and enjoy the festivities with your family and friends! FF