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Bone mets - please join in

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Re: Bone mets - please join in

Hi Linda, 

 

I've had bone mets since Oct 2016. (My primary was back in Oct 2013, had lumpectomy, chemo, radio, lymph node removal underarm and was all clear until 2016). Since secondary diagnosis I have been on different treatments (zometa, zoladex, capcitibine, navelbine, taxol, now exemestane) had to change because bone mets were getting worse and treatments weren't working. I also have herceptin now and denosumab.

I had navelbine for 4 months and it was only towards the latter months that fluid was detected in my lungs (on a CT) to a point that I needed it drained out. It was no wonder I was so out of breath during that time! 

I was on tamoxifen too after primary diagnosis and all the treatments and it worked for a few years until my secondary diagnosis. 

When do you start navelbine? Has tamoxifen stopped working for you?  

I've not heard about Everolimus maybe I will enquire with onc next time. Is it a hormone med in tablet form? 

Member

Re: Bone mets - please join in

Hi Channie 

Like you I found taxol really hard. I was meant to have 12 but had problem with neopathy so got switched to tamoxifen. I was OK for the first couple of days after taxol probably the steroids but after that it was terrible. 

I did not realise you had navelbine for 4 months just with you saying you had lung problems after second lot of tablets. 

I am surprised you have been on such harsh treatments for bone mets. If you don't mind me asking how long have you had bone mets? It will be 10 years in August for me hard to believe.  It will be 2 years in September since liver mets. 

I was on Everolimus and exemestane for 3 years 8 months from 2014 till Sept 2017. Hope it works that long for you. 

Once again thank for sharing. 

Linda 

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Re: Bone mets - please join in

Hi Linda, 

 

My mets are in my bones only and they found some in the chest walls after a biopsy on my lung drainage operation. 

I was on navelbine for 4 months last May to Sept. Taxol I had 15 rounds of, was due another 3 rounds but I begged onc to take me off it as it was so gruelling on me. Finished that just this March. So she agreed and put me on hormone treatment exemestane instead, straight after taxol. so far so good. 

Let us know how you get on with navelbine, fingers crossed it works for you xx 

Member

Re: Bone mets - please join in

Hi Channie 

If you don't mind me asking where are your mets? Mine are in my liver and bone. 

Scary you having to have your lung drained.  

Sorry you are laid up with a broken ankle. 

Linda 

Member

Re: Bone mets - please join in

Hi Channie 

Thank you for your reply regarding  your experience on Navelbine . 

Pleased you are now stable after being on taxol. Although it sounds like you had a terrible experience. How many did you have? I had 10 taxol  which I finished last October . Hope extermestane works well for you for a long time. 

Once again thank you. 

Linda 

 

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Re: Bone mets - please join in

Hi everyone,  I was diagnosed with secondary breast cancer on the right temporal bone area in January of this year I was advised that surgery or even a biopsy would be more risky than beneficial. So my only option was exemestane and high dosage of radiotherapy - 30 grays over 10 fractions.(which finished in early april) I understood that I  would experience increased pain during and after the treatment in the tumour area. I was prescribed 60mg of codeine 4 times a day to help with the pain. The pain subsided quite quckly. But I am feeling the same pain at the site of the tumour and I am  getting very anxious that this means the cancer is active again. I have just had my scans and will get my results at the end of july. Could the cancer be active again? And if so is chemo the next treatment? Are there any other options. The more i read the more confused and frightened i become! Has anyone else experienced similar?

Sending Love to you all Maria xx

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Re: Bone mets - please join in

Hi Lyndyloo, 

 

I have been on navelbine for a short while last year. On the 2nd tablet, 2nd week it made me sick and with bad joint pains, I was off work a week. Then fine after. It could also have given me a reaction to it as my right lung was filled with fluid after I started treatment and had to go hospital to have it drained out. So onc took me off navelbine and we started iv chemo taxol after my lung drainage, which made me even more ill, I was bed ridden for months. But it worked and kept the mets at bay and I heard those magical words of Everything is stable. 

Everyone reacts to drugs differently though so hopefully you will have no side effects. 

I'm currently on Exemestane now and it's working well. Due CT in 3 weeks time to check progress. 

I've also fractured my ankle recently and totally immobile. I guess our bones are just not the same anymore.  

Best of luck x 

Community Champion

Re: Bone mets - please join in

Hi Linda

Sorry to near that Tamoxifen only worked for a short time.  At least it gave you time off chemo which is always a good thing in my books!  I hope Vinorelbine works well with little side effects.  I know there's not many of us who have had it or who are on it so, other than FF, I don't think there's much common knowledge to share.  Ramade, I'm sorry also that Cape has stopped working for you.  It's such a b*mmer when we don't get as long out of a treatment as we hope for.  I do hope a new plan is put in place for you asap.

I'm currently back on Eribulin, which I last had in 2017, and seeing if it is working when I have  scan next month. It's certtainly working on my hair which is now very thin and straggly - not a good look and makes me want to shave it all off but I'm waiting to see if the 'fal'l is over before I do something hasty!  So far SEs have been OK except for the 1st cycle. And I keep getting a flare up of an old root canal toothache which isn't good but seems to be linked to when my WBC/neuts are at their low point.  Trying to get an appointment at the max-fax unit at the hospital to get some decisions about what to do bearing in mind the bone strengthening treatment and it's associated ONJ issue. Something i really could do without.

Hi also to FF, hope you are continuing to do well on E/E.

Nicky xx

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Re: Bone mets - please join in

Afternoon Funnyface 

Thank you so much for responding . Really good to hear you got 5 years out of the Navelbine.  I really hope I get the same length of time. Yes I had read that US don't do the tablet form. As far as I can remember you still are doing well on Everolimus and extermestane . Hope it is still the case. 

I started the new treatment yesterday. 2 tablets per week for 3 weeks then a week off. How is the IV chemo administered? 

Once again thank you . 

Linda 

Community Champion

Re: Bone mets - please join in

Ramade and Lindy, I'm going to chirp in here ladies. Ramade, I'm sorry cape quit working. I got about 2 1/2 years out of cape. Vinorelbine is also called navelbine. Here is the USA tablet form isn't available. I did infusions of vinorelbine. It is usually very tolerable for most. It worked for 5 years for me. Good luck. FF

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Re: Bone mets - please join in

After Ramade

So sorry cape has stopped working for you. Did you get many months out of that treatment ?

I got on well with taxol. The important thing it did work for me. I had 10 out of 12. Developed neopathy in fingers . Last November started tamoxifen which as you know has now failed. Are you going on taxol?. It's such a scary time when treatment fails You could always ask about the treatment I am now on. It is in tablet form. 2 tablets once a week. 

Linda 

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Re: Bone mets - please join in

Hi Lindy can I ask how you got on with Taxol. I had it 20 years ago.Cape has stopped working for me and i'm going downhill fast.Have never heard of vinorelbine but hopefully it will be good for you.Glad you enjoyed your holiday.

Ramade x

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Re: Bone mets - please join in

Morning ladies

Just want to share with you ladies update from me. Had CT scan results not great it has now returned in my liver all be it small. Ater 8 months on tamoxifen it has now failed. I will be going on tablet form of vinorelbine. Has anyone had this treatment so I have an idea what to expect. Can't believe how quick things can change. So pleased I delayed results till after my 2 week holiday in Cyprus which we both thoroughly enjoy. 

Thanks

Linda 

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Re: Bone mets - please join in

Thanks Riversidedawn, so if I want to comment on this thread I have to use the reply button on someone else’s post? Sorry if I am asking the obvious 🤣 xx

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Re: Bone mets - please join in

Thanks Nicky

I've given up trying to find out what he meant by calcium flakes as I've found no explanation anywhere!!!

Increasing joint/bone pain (how do you know which one it is?) over the past three weeks may be caused by long term (2years) use of Letrazole and Zometa. Or it may be a flare-up of osteoarthritis. Or it may be the connective tissue disease I have been taking steroids for since 2010. Onco appointment has been brought forward to 22 July but nobody will commit to knowing what the cause is so I think I now have no option but to go for the best pain relief they can give me. Disappointing to find life so confusing and frightening, navigating the treatments and the consultations and enduring that horrible two week wait between scan and appointment are things I never dreamed I would have to endure. To everybody in a similar position I send my very best wishes

Community Champion

Re: Bone mets - please join in

Katzygirl if you go back a page to living with secondary breast cancer you'll see a big pink Start New Topic button to start a new thread. This Bone Mets - please join in is general daily discussion, but more specific topics are under separate threads.

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Re: Bone mets - please join in

Grumpy that's a huge amount of juggling drugs to combat side effects and then treat the side effects themselves. I'm not surprised you're finding it all difficult to cope with! I must admit, my meds box is a bit like that, I think I need to work out exactly what I do need, but find it changes through the cycle. 

Loperimide is a fun one as too much sends you yoyoing with the movicol. 

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Calcium and Vit D - I find the combined tablets give me terrible 'runs' so I take them separately. So i don't get as much Vit D, and apparently this is where the magnesium is useful - it helps metabolise the calcium and vit D so lower doses are still effective. I'm sure it's the large dose of vit D that upsets my gut....we are all different in our responses to the meds!

I also have sachets of Movicol in case of constipation, loperamide capsules for the runs, and metaclopromide tablets for nausea, all to take as required, and all provided by the clinic.

I use lidocaine patches for pain relief during the day (provided by the clinic) and voltarol patch at night if I'm particularly uncomfortable. Then it's paracetamol and ibuprofen alternately during the day to keep pain at bay. It all seems to be working very well. 

I am finding the fatigue very difficult to cope with, and very frustrating - and no-one seems to have any effective solutions. Any tips gratefully recieved.....

Grumpy

 

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Re: Bone mets - please join in

Hi Katzygirl,

Yes, you're right, there isn't a reply to the thread option, so replying to a thread is via 'reply.'

ann x

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Re: Bone mets - please join in

Hi G

i also had to ask what lesions are and got the same answer, onc explained that she was using the terminology that the radiographers used in my scan report as that was what she was showing me at the time. 

Re the Magnesium with Calcium and VitD I have a feeling I was prescribed Calcium after a bone density scan to check bones after 4.5 years on tomoxifen, whatever it was if gave me terrible constipation so I stopped but was told by someone that taking magnesium with it can help with that. I am due to take Calcium & VitD when I start my treatment so would be good to know people experiences. 

Sorry to put this on your post but can anyone tell me how to comment on this thread, I have only commented by replying to others as can’t see how to do a fresh post and the help guide didn’t help lol. Xx

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Re: Bone mets - please join in

Hi to all, 

Having finished a very tough 15 rounds of chemo in March for my bone mets and just getting back on track with my life, I have this week fractured my left ankle in 3 places and heavily sprained my right foot!! I had pins and needles in one leg and just got up from my desk at work and my weight wouldn't hold and collapsed when I tried to walk. I had an operation to "fix" the left ankle and can put abit of weight on my right. It will take 6-12 weeks to recover doctors say. So I'm now back in bed out of action yet again! The walking frame and crutches are hardwork to use as I don't have much strength on my arms, esp on one arm where I had lymph node removal underarm. So I'm pretty much immobile. 

I'm currently on Aromasin (exemestane) for my mets with herceptin and denosumab. Have missed my due herceptin now due to this and my denosumab is due next Weds, no way am I able to get out to hospital to have that done either. 

I see it says bones can get brittle on aromasin plus cancer are in bones anyway... I wondered if anyone else has had any broken bones/fractures due to mets and/or meds and any advice you have on this. 

Feeling very fragile and in shock still. 

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Hi I am on letrezole and palbociclib plus was on denosumab but now bk to zometa as it is cheaper! Been on treatment since April 2018 3 monthly scans shown some reduction in secondaries and all tumours stable. Secondaries in both lungs base of spine and pelvis. Hope you all get on ok with treatments liz

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I think the oncologists don't always give full information - maybe due to pressure on time, or maybe trying not 'worry' patients.

My oncologist talked about lesions, and it was only when I pushed for an explanation that he explained that secondaries, mets and lesions all refer to the same thing I.e. cancer!!! Not helpful.......

I've also found that General oncologists don't seem to have the same mind set as breast consultants. The latter include us as part of the team, the former seem to regard us as patients to be treated. I'm training up my oncologist to a better approach! 

A useful tip - a nutritionist advised me to take magnesium with the calcium and vitamin d to help more efficient uptake. I asked the pharmacist in B###s and she found the correct supplement for me - result! 

Awaiting appts for scans and trying not to worry.....

Grumpy

Community Champion

Re: Bone mets - please join in

Hi all and particularly to  dogsdinner who asked about calcium flakes in her bones. To be honest I’ve never heard of that and I’m not sure any of our oncologists give us all the information so maybe some of us have them as well! This might be a time to check it out on the internet to see what it means, if you think you want to know (it can be a scary place as we all know) or ask your oncologist next time you are there! Sorry to hear you are feeling the burden of yet another, different, condition added to your existing SBC. It’s very difficult to cope with one condition let alone two. I had heart failure for several years (caused by chemo) and it got worse and worse. Trying to speak to specialists about both life affecting conditions was a nightmare. They are great (or should be great, some aren’t as I found out to my detriment) in their own field but really don’t understand the other specialists field. It drove me to the brink of depression even without having had any before so I understand why you are seeking help in this area now. I hope you find the right person to help you on all counts.

Nicky x

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Re: Bone mets - please join in

Thanks to all for your replies - it's great to have people out there who actually have sensible things to say.

My GP deals with all repeat prescriptions for drugs except the palbociclib which I get from the hospital when I see the oncologist and have the denosumab jab. Also he likes me to see shortly after each oncology appt to make sure I understand the letters from the hospital etc. He gave me a letter to help apply for sheltered housing because I live up a hill, and won't be able to manage that at some point  - not for a long time yet!!! I have all my bloods taken there rather than trotting off to the hospital. There is a secondary breast cancer nurse attached to the onc clinic, and she is brilliant. However all the advice in the world about the fatigue doesn't make it go away. I am learning to pace myself (grrrr!!!!) but frankly IT'S BORING not being able to get out on the fells with little Joey. He's the westie on the image, Meg the corgi died before Christmas. In Benchland he was known as the ASBO Boy.......... and Meg was The Duchess or Your Grace.There is a secondaries group near me which is good, and also a local cancer charity offers counselling so I'm booked in there. Not discussing my health with local friends means I rely on professionals, and that's the way I like it as I am private about most things and anyhow, it can be exhausting to talk about.

cheers

grumpy

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Re: Bone mets - please join in

Katzygirl,

 

i just noticed your enquiry about making contacts with other secondaries. Do you know that Breast Cancer Care organise secondary meet-up groups around the country? I go to the one in oxford when I can. It is nice to be among others who you know understand. And there can be sharing, advice and general support. Sometimes the meet-ups include visitor speaker sessions on various topics. Anyway, here is the BCC link where you could see if there is a group meeting near you. But if the web page isn’t clear just ring the BCC helpline.

 

link: https://www.breastcancercare.org.uk/information-support/support-you/secondary-metastatic-breast-canc...

 

If there is a group near you then click on it and you should find their calendar. They meet once a month. hope this helps.

 

mo

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Re: Bone mets - please join in

Hi Vercors, can you tell me what site you post on on Facebook please. All this is very new to me and I want to read of other experiences and helpful advise and tips and much as I can x

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Re: Bone mets - please join in

Hi Pea

I had my first appointment with my oncologist this week after being transferred over to the medicine from surgery following new diagnosis of secondary in bones. 

I had lots of questions one of which was about support groups where I could meet others with the same or similar diagnosis.  She advised that there were none that she knows of but was very negative about it which was so disappointing.  She felt that because everyone had different diagnosis, treatments and outcomes it would be unfair to those not having good results or struggling emotionally to cope.  I sort of see her point but I know you are finding it really helpful and with my experience on this forum I feel it would be really good for me too.  I work at the hospital so I am thinking maybe it is something I could look in to starting. Any idea how the group you go to was started?

I would love to hear more and any contacts or literature you could let me have would be fab.

Steph x

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Hello

I was diagnosed with secondary BC with bone mets nearly two years ago and after a couple of posts here (which received wonderfully supportive replies btw) I decided to go into "informed denial", which actually worked quite well with long phases of "ups" and relatively few and pretty temporary "downs". But now other life events and a brand new illness (osteoarthritis - it hurts!) have sent me into depression, for which I have booked a counsellor and upped my Citalopram.

The thing related to the secondary BC is that the last time I saw Oncologist he said (looking at a scan) "your bones are awful". He went on to say that there are lots of calcium flakes in my affected bones but said that this shouldn't cause me any trouble. Does anyone know what this means? I'm on letrazole with three monthly Zometa having had a reaction to Palbociclib which exacerbated an existing lung disease. I'm now s keen to talk to other people with this condition as even though I do consider myself a stoic and articulate person I usually come out of onco appointments more confused than when I went in.

 

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Hi Nicky

Thank you so much for researching and finding the info on the treatments they are proposing, so good to have an explanation in terms that I can understand.  Also the advice on other areas of this website that I was unaware of, I tend to use my phone for just the Forum but will try to find the time to get on my laptop and have a proper look.  Since this horrible diagnosis I have been filling my days with work and maintaining my previously active social life with the aim of keeping my mind busy and carrying on as normal while i have no symptoms and side effects from the treatment when it starts.

i had forgotten about radiotherapy, my Husband was asking what they will do if they feel the area at the top of my spine is too weak to start treatment and I said surgery but maybe radiotherapy will be the answer. I had radiotherapy on my breast 6 years ago and tolerated it really well with no side effects, I know different areas of your body can react differently but it could be a better alternative to going under the knife again. 

Really appreciate your continued advice and support. 

Steoh x

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Hi Grumpy

I am a new here too and also owner of 2 beautiful rescue dogs. I am still on the rollercoaster of tests and additional diagnosis so I haven’t started treatment yet but am very lucky that I appear to be symptomless despite the fact  I seem to have extensive mets in my pelvis and spine (that’s so far as full body MRI booked for next week)

I am trying to carry on my life as normally as possible, I’m 58 married and work full time at the hospital were I am being treated. Working full time means I don’t get to walk my dogs every day but even a 5 mile walk I would struggle with normally so I do admire you.

I so get the head tilting sympathy thing, I wonder if anybody actually feels the benefit of that, I also hate Chrysanthemums! 

I hope your energy levels do return and you will get more great advice from here. Also good to hear you have a good Oncologist and supportive GP. As I am still at the tests stage my GP hasn’t been involved yet although letters do go to the GP practice,  can you tell me in what way your GP is involved? Maybe because Colchester Hospital has breast care & a secondary breast cancer nurse they take the place of the GP care? 

Here’s wishing you some lovely walks in the summer sunshine with your little dog and hope your energy levels return soon. 

Steph 

 

 

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Just to update you all on this wonderful thread, I posted a couple of weeks ago that I had been diagnosed with a met on my spine which has caused a fracture at L2 and spinal cord compression.  It was biopsied under CT guidance a couple of weeks ago - I was sedated and out like a light - and I am being admitted tomorrow for decompression and fixation on Monday at St George's Hospital in London.   I am glad things are moving on  now and the next step may or may not be radiotherapy to spine then starting targeted treatment with a combination of drugs including the one beginning with A - don't have all my bits of paper to hand, Fulvestrant and a bone strengthener.   Unless of course it has morphed into something else but oncologist thought it unlikely.  The information and support on here is invaluable and I hope to be able to contribute.  You are all in my thoughts xx

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Hi to all 😊

Sorry to all ‘newbies’ who find themselves in the place they never wanted to be but we are a supportive and knowledgeable bunch. This thread was very active at one point but now swings from active to nothing being posted but will always get a reply from someone as it’s such a long running thread and most of us have bone mets.

Firstly katzygirl. Having looked up the drugs, including the branded name (which I didn’t know) that have been mentioned by your onc it seems you will be on hormonal treatment (Fulvestrant) together with the newer Abemaclibib and a bone strengthener. This seems fairly normal if you are hormone positive, HER2 negative. The Fulvestrant element is given in the buttocks every 4 weeks and Denosumab can be given at the same time (as a subcutaneous injection) either 4 weekly or sapaced further apart. I haven’t had the newer drug as I didn’t fit the criteria ie I’ve had too many previous treatments so can’t comment on that but I think there’s a thread on here somewhere about it, maybe have a look out in the SBC treatments section? 

As with all drugs given they are systemic so they will work on all mets found (the brain being the exception) but if further scans show any organ involvement the oncologist may want to put you in chemo. Also if you have bone mets that are weakening your spine too much you may need surgery or a blast of rads to target that area. Hope this info helps.

Hi to grumpy as well. I bet you really are grumpy now you have mets, and no wonder, we all are! As to your question about fatigue I think we all react differently to the treatments we are on however cancer fatigue has been mentioned to me in the past. I’m not sure if it’s just side effects or psychological but the impact of being told you have mets is incredibly draining emotionally and physically. However once your body adjusts to the new onslaught of drugs you may find your energy picks up, it’s still great to be walking 3 miles a day although I appreciate it’s not your usual 5-10 miles. If you find it’s a real problem maybe speak to your BCN (if you’re lucky enough to have one, you’ll find specialist SBC BCNs are few and far between) or seek out extra help with these questions. This website may help as there are meetings and events for SBC ladies around the country and some deal with this fatigue problem. Sorry I can’t be of more help with this but also make sure you’re listening to your body, if it’s telling you to take it a bit easier maybe you do need to, even if it’s temporary.

Nicky x

 

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Good morning all

I have recently been diagnosed with bone mets, 9 years to the day after primary dx. A bit of a shock to say the least, but I am getting superb care from the oncology dept, and marvellous support from my GP.

On denusomab, palbociclib and letrozole plus Calcium and vit D - I cant tolerate the combined Ca/vitD so i take them seperately. Mets are in spine, possibly ribs and some chance of lung mets but too small to decide as yet.

I don't tell people locally what's going on, just that I have Crumbly Bone syndrome and let them assume osteoporosis. I talk only to the professionals and a few friends who live far away because I really can't be doing with the head tilt and how are you getting on. My response would be No chrysanthemums at my funeral!!!!

So I've moved here from Benchland for support and a chance to have a rant now and again......I live on my own and have no family. My god daughter is my beneficiary, although she doesn't know yet because she has enough to cope with just now.

My main concern at the moment is the fatigue as my main activity has been walking 5 - 10 miles a day with my dog, and I struggle to manage 3 miles these days. Have you got any tips for coping with the fatigue? How long does it last - is it temporary or longterm? Does it get worse rather than better? 

At least I've got a new home sorted for Joey, a westie cross, with friends who speak dog, should it come to that.

cheers

grumpy

 

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Hi Steph, good luck with your scans, they are doing the whole lot on you aren’t they, as you say your organs are clear so that’s good too,  I can’t pass on any info about chemo as fortunately so far I have never had any.

 I use to have bone scans yearly but they have now been replaced with full body MRI as they have tended to ease off bone scans now, I also have 3 monthly CT scan. My mets are in my hips, ribs and spine and I’m now 5 years in, been on letrozole for almost 4 years now also denosumab and zoladex and have stayed stable 🤞🏻Really only tend to struggle with pain a little through the winter months.

hugs Janette xx

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Hi Clarence I am so sorry to hear you are and have been having such a difficult time.  I discovered The Thrive Programme by Rob Kelly a few years ago and with the help of many sessions with a Thrive Consultant via Skype I made great progress with dealing with a life long phobia (I’m now 58).  I had tried so many treatments over the years that didn’t help at all, some actually made me worse! The Thrive Programme

is a fabulous book that can be bought from Amazon for around £25 and well worth a look. It takes some work and you really need to apply yourself and stick at it and can also get help with regular seasons with a Consultant. I paid £650 to mine and that was for as many sessions as I needed for as long as I needed until I was where I needed to be, well worth the money. They also have a website with testimonials from people who have transformed their lives. I hope this helps. XX 

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Hi Pea, I saw an oncologist yesterday, not the one I was expecting to see, he is off sick and they don’t know how long for.  Unsure if I will be under his care when he gets back or if I will stay with the lady Consultant I saw. So they got my CT scan on the screen and tried to show how the lesions show up

on the scan. They are in my spine as well as my pelvis and they are concerned about an area at the top of my spine in my neck. I have now been booked for full body MRI, a bone scan and an ultrasound, results will go to spinal surgeons to see if they need to do anything to strengthen my spine before treatment starts. Treatment plan is Verzenios  Abemaciclib chemo tablets and Denosumab bone strengthening injections , I also seem to have a leaflet for Fulvestrant (Faslodex) can anyone tell

me anything about these treatments. Still feeling fairly positive mostly due to you wonderful people on here, not sure how many lesions on my pelvis and spine but the good news is it looks like my organs are clear. There are what looks like 3 small cysts in my kidney but onc said most people have these and they are harmless but I think that is what tomorrow’s ultra sound is going to double check. Worries now are that full body MRI could show more mets in other areas and what damage they will find in my spine. Still feeling very well and no pain at all which they seem surprised about. Steph xx

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That’s amazing, so admire your decision about keeping it to yourself and so good to know that you feel well, look well and are 4 years in. I am guessing from this that you haven’t had chemo? Hard to believe they can’t find your primary but know it is breast cancer, I have so much to learn.  I have been at work this week and finding it really easy as all my colleagues were updated at my request and it’s like nothing has happened, until I got the call this afternoon. MDT was yesterday, I have an appointment at 9am tomorrow, I have been squeezed in to a very busy clinic as the main onc (my first choice) is off sick. So anxiety set in but I’m slowly getting it under control. I will let you all know the outcome, praying it is something without too many side effects but you lovely people have made it all so much better, thank you so much. xxx

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Re: Bone mets - please join in

Hi Katzygirl, it’s now almost 4 years since I got my diagnosis, straight to stage 4, my primary is breast but hasn’t been found and my secondaries are in my upper spine. My treatment is similar to Anne30 but as I was already on treatment when Palcibiblib was licensed I don’t qualify for that. I agree with what Anne has said, I feel very well, it hasn’t stopped me from doing what I want to do and I still haven’t told my family (I’m not married) about my diagnosis, only a few very close friends know. I decided I didn’t want to be reminded all the time about it and wanted to make my own decisions about how I was going to approach things. Reason I’m saying this is nobody has ever questioned me about my health, infact I get told how well I look, so try not to worry about looking unwell once treatment starts, stay as positive as you can, and do things you enjoy as and when you can, Kate x

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Re: Bone mets - please join in

Hello. I am now just over a year into treatment for bone mets. I have Zometa once a month letrosole every day and palcibiblib one week on and one week off. I work full time and feel fine. I agree it’s hard to believe I’m so ill. If at all possible I think it’s best to get on with things as well as you can and enjoy them as much as you can x

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Re: Bone mets - please join in

Thank you so much for all the info,it’s just what I needed! Dreading being recommended chemo as it terrifies me. I have had a sickness phobia all my life, I have improved it a lot recently by going through a specific programme and working at the hospital but it still scares me.  I am so tough with everything else and have a very high pain threshold which is why I would always opt for surgery normally. So good to know that treatment also doesn’t take over your life and that you can have long periods of feeling well. I have no pain or any sign I am not well, I have a healthy appetite and no tiredness so hard to believe I have incurable cancer. I just suspect that once I start treatment whatever it is and have got to go through a period of feeling and looking unwell and think that will really bring me down and make me think that things aren’t going well if that makes sense. Anyway I am rambling on! Hopefully in the next few days I will find out the extent of the mets abd what treatment they recommend. Thank you again for taking the time to help me feel more positive about life from now on. Steph xx

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Re: Bone mets - please join in

Hi katzygirl

I had exactly the same situation when my bone mets were diagnosed 11 years ago. My breast cancer had come back as a local recurrence and I was due to have a mastectomy when a CT scan showed spots in my bones, just the 2 on my spine.

Basically it was decided that a mastectomy was out of the question as the main aim is to treat the bone mets and stabilise them. Any treatment you have, be it hormonal or chemo will be based on your biopsy and would usually be the same as your original primary. Any treatment like that is called systemic ie it treats the whole body including any breast cancer cells in your breast. There is an ongoing debate as to whether the new primary, or recurrence, should be removed by surgery and that seems to be down to the individual oncology team. However usually this would happen after a period of stability in the bones has been noted and to show you are responding to treatment. Surgery involves issues such as immunity so chemotherapy couldn’t be used if surgery had just taken place. Usually for bone mets you would be given a bone strengthening treatment alongside whatever other treatment you are suitable for, possibly chemo or maybe hormonal (based on you having hormone positive BC from your post).  Treatment will be ongoing, there is no cure for secondary BC but it is treatable and since my diagnosis 11 years ago more treatments have become available. Although I have had quite a few different treatments now I have also had long periods of stability where the treatment has been very unintrusive and I have been able to continue getting on with living life! Btw regarding surgery I didn’t have the mastectomy and when I asked my oncologist a year or so down the line he said there was nothing there to remove, the recurrence had gone and it has never shown up on any scans since.

Nicky x

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Re: Bone mets - please join in

That’s really helpful, thank you so much xx

pea
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Re: Bone mets - please join in

Hi Stephie,

Sorry to hear you have been diagnosed with secondary bone mets. It is a scary time but I have found our Breast Cancer Group meeting every month such a great support and a great source of information. The other ladies are all fab and we all support each other.

If you go to the breast cancer care website and click on "in your area" it lists all the places there are meetings and you can register from there. Here is the link:https://www.breastcancercare.org.uk/in-your-area

Quickly looking through I saw there was one in Romford - I don't know if that's any use to you. Have a scroll through the list and hopefully there will be one near you. Breast cancer care are also really helpful if you phone them on the number on their website. 

Hopefully you will see the oncologist soon and get some answers and a treatment plan. Take care, Phoebe xx

 

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Re: Bone mets - please join in

Katzygirl, Treatments can vary. Some ladies do well with hormonal, others do better with chemo. Nobody's cancer responds the same way. Also, you might take a drug and feel fine on it might make someone else as sick as a dog. I started with a hormonal and my cancer grew. My oncologist said hormonal would never work for me. I went for a second opinion and that oncologist said the hormonal he gave me shut down my ovaries and not my adrenal gland. He said my oncologist didn't do anything wrong, but he would have added another drug. Also said he still thought hormonals cup l d work for me, but agreed it was time to blast it with chemo. He said if my onc wouldn't try hormonals come see him he would. I did 9 1/2 years of different chemistry and pablociclib came in the market. I told my onc I wanted to try it. He said no at first and I persisted. I won! It worked for 2 years and shrunk everything and cleared out thus stuff called ground glass opacity. They did decide it quit working, but I've been doing wonderful since I did. I still breathe better than I did for many years. I can walk further and for a longer time. You never know which drug might be the one to help you. By the way, I live in the USA. I'm about an hour west of Philadelphia. You will find me posting at star n he times bc of the time difference. FF

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Re: Bone mets - please join in

Hi Anne 

I was very interred to read your post as I have just been diagnosed with bone mets a few weeks after being told I have BC for the second time.  The first time was 6 years ago when I had a WLE, radiotherapy, 4.5 years of tamoxifen and currently on Letrozole. I was for to go in for single mastectomy with immediate reconstruction this week but during the tummy scan needed to locate blood vessels bone mets were found in my pelvis and the op has been cancelled. I am now awaiting further scan results and appt with oncologist to find out my new treatment plan.  What worries me is what will be done now to cure the breast cancer.  I can see you were diagnosed with both at the same time, are your treatments tablet based and are they fighting the breast cancer as well as the bone mets. So good to hear you are feeling well xx

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Wow that is so good to hear and very happy for you and your family. 

I have had great care from Colchester Hospital and have actually worked there for the last 4 years but after reading lots of posts on here I really feel they should have given me some helpful info with regards to the possibility of a positive outcome. I realise that giving that sort of news has to be done with a sad face and grave voice but they wouldn’t give me any info. I asked the surgeon how long I could live and after a long pause and looking at me with great sadness he said “I don’t know” very frightening.

Anyway I hope when I see the medical oncologist he will have good news and be more upbeat about the possibilities, in the meantime I will keep reading all the helpful advice on this thread and hopefully work our how to glean other useful info from the site.

 

Thank you again

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Re: Bone mets - please join in

Hi Pea

I was diagnosed with BC for the second time 6 weeks ago and was due to have mastectomy and reconstruction Tuesday if this week but CT scan in prep for this showed secondary bone mets in my pelvis. I have now had further CT of chest, abdomen and pelvis and awaiting appt. with oncologist. I was introduced to the secondary breast cancer nurse who was unable to tell me anything useful apart from the fact that she had patients that she had been seeing for years. The whole appt was very doom and gloom so thank god for this forum.  

 

I was really interested to see you have a group that meet and give advice, I am in Colchester in Essex are you aware if there is anything like that in my area please as not sure how to search on here being a newly.

Stephie

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Re: Bone mets - please join in

Katzygirl, I have lung mets. When Nov rolls around it will be 15 years with lung mets. I can't promise you 15 years but, crossing my fingers that it gives you some hope! FF

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You have just made my day! Diagnosed with bc for the second time 6 weeks ago and booked in for mastectomy with DIEP reconstruction next Tuesday 25th June, part of the prep was a CT scan of my tummy to see where blood vessels are as that was the tissue that would be used in the DIEP reconstruction, then got the bad news that this had shown up bone mets and surgery cancelled. Now had further CT and waiting for MDT and appointments with oncologist. Saw it as a bit of a death sentence to be honest so to read this a huge relief and has given me hope. I will now read on and be contributing as  I go on this new journey.