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Bone mets - please join in

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Re: Bone mets - please join in

Hello,

 

I’m new to the forum and thought I’d say hello and see if anyone had any tips etc. I’m abit different in I’m 35 and male, I was diagnosed with BC 3 1/2 years ago which required a mastectomy and ongoing tamoxifen. I thought that was that.

9 months ago during a CT for something else they found a lesion in my T12 spine. For 9 months I’ve been told it’s nothing probably benign etc. I’ve nagged and nagged and after many further scans and a biopsy had it finally confirmed a few weeks ago (by phone) that the breast cancer has come back.

Seen the oncologist last Friday who told me I’ll be on zoladex, letrozole, Palbociclib etc. She said I’ve probably got a couple of years, which I found very negative 👎 

seeing the radiotherapist tomorrow to talk about SABR radiotherapy.

I’ve just not been filled with confidence that what they propose is optimistic/aggressive enough. From what I’ve read online for single metastasis they can do surgery etc and try to effectively cure it or do separation surgery and stabilisation then SABR etc. I’m worried they just want to control it and not try to get rid of it (I know it can’t be ‘cured’ but think it should be treated like it can be.

I’ve been fobbed off for 9 months and I’m abit scared I’m being fobbed off again with standard treatment when there’s possibilities of doing more.

I’ve 3 young boys, loving wife and I’m  frightened of the thought I won’t be around for them. I just want to do everything I can to give me a chance to be around for a while.

well that’s basically me, thanks for reading, hopefully I can learn from this forum and get support when I need it.

Dan

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Re: Bone mets - please join in

Hi Katzygirl, glad your feeling a bit better .Of course I will meet up , just let me know .My daughter is about to give birth anyday , and wants me at the birth, if I’m up to it .I will be there for sure .What area of Colchester, do u live .Wait to hear from you x

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Hi Hannah, now into week 7 and things have finally settled. Had so many side effects the worst being the tummy troubles which had me virtually housebound and right off my food for a while which is very unlike me! My Mum was very poorly in hospital when I started, I got shingles 3 days in and then Mum died which caused a huge falling out with my Sister so some of the side effects may well have been due to that . Ended up having a 10 day break after just one months treatments but now 5 days in to month 2 on a reduced dose of abemaciclib (100 mg) and tummy is good so far so I plan to return to work on Monday all being well. I would love to meet up when you feel up to it. Would also love to hear from anyone else on the Abemaciclib, fulvestrant, Xgeva combo or similar as i know it is fairly new. Steph 

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Re: Bone mets - please join in

Hi

Just some additional information from me as a long term secondary BC survivor.

I have had bone mets for over 11 years now and also liver mets for over 6 years. Over this time I have had various treatments, some more intrusive than others. 

Your treatment plan is based around the type of Brest cancer you have (that has now spread outside of the breast to another area of your body). This might mean you have treatments other than hormonal ones ie Herceptin. A biopsy can determine whether your secondary BC is the same as your primary. If one can’t be performed, due to difficulties accessing the site of the mets, it will be assumed your SBC is the same as your primary was and relevant treatment given.

If you are lucky you will also be given support from trained nurses or MacMillan specialists as described in the previous post but believe me it’s not available in all hospitals so you may need to do your own research or ask lots of questions. It’s been a constant factor ,mentioned  on here over the years I’ve been a member, that SBC is not supported anywhere close to how primary BC is supported, there are very few trained SBC nurses and not all hospitals have a direct link to MacMillan. I’m only adding this info as you may not be contacted at all, I have never been and have only occasionally been introduced to a SBC nurse only to have them disappear from the scene a few months later with no replacement in sight!

Good luck to all with a new SBC diagnosis, it is a very scary time, we have all been there so do understand what it’s like. There are lots of different treatments out there, some only just available in the last year or so and some which have been tried and tested over many years. Although breast cancer can return at any time after the primary has been treated there are now more options available than at any other time to treat it.

Nicky x

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Re: Bone mets - please join in

Hi JDT1970 - I am new to the forum and I am supporting my partner of 32 years. Her breast cancer has returned in her spine after 10 years from her primary. I think her experience has been the same as yours up to now. She had to see the Orthopaedic consultant because she needed a bone biopsy. This was just to confirm the bone cancer is breast cancer cells so they know how to treat you. My partner had to have a biopsy taken from T4 vertebrae and it confirmed it was breast cancer in her spine. She also had a CT Scan but it was to see if the treatment she was put on was having an effect on the cancer. Fortunately her cancer is responding to the treatment she is on. The bone biopsy doesn't hurt and CT Scan is routine to gain a base line of how small/big your cancer is so they will know next time they Scan you how well the treatment is doing for you. If it is shrinking the cancer. You will feel stunned, we were completely devastated as we thought like you after 10 years it was as gone. The questions we asked were how big the cancer was and was it anywhere else in her body. Thankfully they said it was in the spine. We then asked about treatment, side effects but they do give you all the information you will need. They will arrange for nurses to call and MacMillan nurses to call to see if you are having and problems with medication, another will come to see if any aids will help you in the home and another MacMillan nurse will come to go through what benefits you are entitled to. Don't be freaked out by all this. We were at first but we later realised they are there to help and it's comforting to know someone is there to talk to if help is required. My partner commenced on daily Letrozole which is an anti-oestrogen drug, daily Palbociclib for 21 days then 7 off and she will be given Denusimab (probably spelt wrong, sorry) That will be given as a monthly injection when she starts it. We are delighted my partners cancer is responding to treatment. There are side effects from this drug but it's a case of managing them best we can between us. Unfortunately I am disabled in a wheelchair and my partner is my main carer and we have no support system around us. We are very much on our own with it. That's why I have joined the forum to gain support as a carer for my partner. It's very difficult for me but it's something that I will do to the best of my ability, no question. I am there for her 110% but I need support so I can support my partner the best I can so I am hoping to gain help from other carers. If there is anything I can help you with please don't hesitate to message me. Keep strong. Breast cancer in the Bone can be treated these days. Love Dot13 x

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 I’m also new I just found out Friday that I have met in my shoulder bone I’m meeting with my oncologist tomorrow morning to go over the biopsy find out how bad and what the treatment is going to be I can’t say how much I’m scared to not know how long I may have in this world I definitely need support going through this as much as possible thank you anyone who reaches out to talk to me 

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I’m 18 months in now and I felt better once I had a treatment plan in place. Thinking of you Anne 

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Re: Bone mets - please join in

I was just diagnosed I’m meeting with my oncologist tomorrow to find out how bad and treatment options. I’m very scared as not knowing how long I have is horrible. Plus I hate needles 

the “not knowing “ is the worst 

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Sorry I've been so quiet lately. I've had horrific stomach bug last week still recovering now barely been eating been on anti sickness last few days and going to carry on them. I've had horrific nausea was only sick on Wednesday but dunno about you lot I rather be sick than feel sick.

Anyway went oncologist before i was sick still felt rotten and my csncer markers went gone down so lethzole is working. And she asked me if I wanted to go back on precaulib I said no but she didn't mind as lethzole was working plus had horrible side effects. So I got my injection of denusomab

 

How has everyone found that dunno if it's delayed me getting over my sickness bug or not xxx

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Don't know if this helps, but my gut reacted terribly to Adcal..... so now I take calcium, vitamin d and magnesium as seperate supplements to give the correct daily doses. This does not upset my gut at all, and blood tests show I'm getting enough.

I'm also on denusomab, letrozole and palbociclib and it is working very well, all mets reducing dramatically, so I'm very fortunate. The real problem is the fatigue which I am struggling with and finding deeply frustrating - any tips????

Grumpy

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Re: Bone mets - please join in

Jackie, I am sorry that you had to join this group but you have come to the right place. 

I was diagnoses with bone met in dec 2011, almost 4 years after my primary diagnosis.

for 6 years I was stable, the unfortunately the treatment I was then stopped working, I since had to change treatments a couple of times. I don’t know what treatment you will be on as it depends on your type of cancer but I am sure you will likely have a few sessions of radiotherapy for the pain (It might get worse before it gets better but don’t worry, it will eventually get better. You are also likely to get a bone strengthener, there are many out there, some are tablets, some injections or infusion. 

I am sure you must be worries, and I know if I tell you not to worry, you will find it difficult, but it is not a death sentence. Secondary Breast cancer is managed much better than it used to be. Take care. Xx. 

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Re: Bone mets - please join in

Jackie, I'm sorry you have this shock and we all understand. I do not have bone mets, I have lung mets. The good pert of it coming back after such a long time is that it is often a slow growing cancer. Let's hope yours is. I had my breast cancer at 41 and it took 10 years for my Mets to show up. I turn 65 in Oct. Soon will be 14 years. Lol it's been so long I was adding wrong and thought this was going to be 15! Nope 14! I hope some bone mets ladies come along soon to give you some advice. I just wanted to welcome you. FF

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Hello - I'm new!! Had MRI this morning, and by this afternoon confirmation of bone mets in right femur. I've been walking either using a stick or crutches since June, unable to bear weight on that leg. Initial diagnosis was Dec 2002 when I had WLE, chemo, rads and ovaries removed at age 32. I'm totally in shock that it's back after all these years, and completely out of the loop on treatments etc.

i have a CT booked for Monday afternoon (can't eat for 4 hours before - what's that got to do with my bones....) and appointment with orthopaedic specialist Wednesday morning. No word from breast cancer team or oncology yet. What questions would you advise I ask? I'm feeling stunned right now so any advice would be great.

Jackie x

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Hi Katzygirl.Gosh you are having a tough time , I remember getting shingles when I went through cancer treatment first time round .Its so painful, and the little ulcers on your lip really can get you down .So sorry for your loss  at this awful time .Of course I will meet up with you , when you are up to it .I believe we are on same treatment, so hang in there , side effects will improve Take Care stay strong xxx

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Hi Hannah, hope you are well. I’m not sure which treatment you are on but know you live in my home town so under same team. I’m now 3 weeks into treatment and really struggling with diarrhea that comes on so quickly it’s getting really debilitating. 

2 days in I had a pain in my side that turned out to be shingles so 5 tablets a day for a week which also has the side effect of diarrhea. Was hoping last week would be better as they had finished but I think it was worse.  I have now had 3 weeks off of my beloved job and wondering if it will ever settle. I now have a bottom lip covered in little ulcers and itchy spots on my upper legs. 

I did get a tip from another site to take 

Abemaciclib with high fat foods like peanut butter, I was hoping this was the breakthrough but not so far, I hate peanut butter too lol. My Mum died on Tuesday so have added stress of funeral arrangements and a fall out with my Sister so maybe I can’t expect to pick up yet. 

Would love to meet up in a few weeks when I will hopefully get my positivity and my stomach back. I hope you continue to do well and sorry for the moan. 😆xx

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I was unfortunately taken off Pablo because side effects they were looking at reducing dose but this month I'm. Having rest month I'm. Due start. Bone drug too and I went into stage four too my. Counters have gone down mjnd hut dint. Know. Radiotherapy or lethzole xxx

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Hi Daylightdancer

 

i am scanned every 3 months. Went straight in at stage 4 just over 2 and a half years ago so can only be treated not cured but the palbo letrozole combo seems to be working. There are quite a few of us on this so hopefully I can give some hope to others x

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Re: Bone mets - please join in

Wendy I'm so. Pleased for you I was diagnosed in June how often.dkd you have scans after diagnosis xxx

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Hi All

 

Yesterday I got my scan results and good news in that I am stable so still on Palbo and letrozole and now on Month 22. I really couldn’t believe it so long may it continue for us all. 

 

Wendy

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Hhhmmn that’s news to me too, thank you for that I will ask my onc about this at my next appointment.

janette x

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I didnt know there was two types either of bone mets xx

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@ElaineD wrote:

There are 2 different types of bone mets (lytic+sclerotic-apologies if you already know this). It could be you have both types (I do), which would explain this apparent discrepancy.


Sorry for jumping in, but I just seen your post and I have bone mets and didn't know there were 2 different types. Do you know enough about them to explain it to me. Thank you Shelly.xx

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Hi Katzygirl Good Luck with treatment, fingers crossed it goes well .Am here if you need to chat x

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So went to consultant last Wednesday my cancer gone down from 200nro 150

 

However my calcium still not high enough for bone drug which can't spell what's everyone's effects on this drug I'm worried about the tooth ache and jaw pain. She wants me have well. Month so no precibib either but I'm slowly refusing steriods 1mg I was on 8nad one pont, tell you this much dunno if the lethzole or what I'm stiff as anything getting up xxx

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Hi Hannah it’s good to have contact

with others in the same town going through treatment.  Glad yours is going well apart from the SE’s

our biggest dread! Tomorrow’s the start for me except for 4.5 years on Tamoxifen and 1.5 on Letrozole unfortunately I guess the later didn’t work so I find myself here. Perhaps we can have a meet up when I have settled in to my treatment. Hope you continue to do well xx

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Hi Katzygirl I too live in Colchester.I was first diagnosed with Breast cancer way back in 1999 , had chemotherapy and radiotherapy, and thought I had seen the last of it .Un fortunately it decided to return last year , was devastating. Am in a treatment plan which is going ok , side effects not great , but a small price to pay , if it keeps it under control x

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Good afternoon all

 

Just seen the oncologist about scan results, and all the Nasties are reducing dramatically!!! 

This is after just 3 cycles of palbociblib and denosumab, so I'm thrilled to bits.

The treatment can work - not cure us, but give us a good quality of life for a long time, and that is encouraging.

The cancer fatigue is the side effect I find hardest to deal with, I'm used to walking 5-10 miles most days, and I'm lucky to manage 2/3 miles now and that's with pauses to rest and/or a strong coffee. I do all the recommended things - regular gentle activity, pace myself, rest before important events etc etc, but frankly the improvement is marginal.

Any tips, anyone???

grumpy

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Re: Bone mets - please join in

Hey

 

How are you I'm Cazzy I've been having calcium dc40 as calcium low last month before i can Denosumab. So I'm getting bloods taken Monday check up Wednesday and maybe gett the injection Wednesday all good what side effects yiu had if any or is there

 

Hooe don't get many as been horrific with radiotherapy and been pretty ill tbh xxx

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Ooh I'm glad thread of this is here. 

 

As. I've. Recently. Had tough time. Xxx

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@Anne30 wrote:

Hello. Sorry to hear you’re joining us but welcome. It’s a helpful place I find. I have mets in my bones. I’ve been on Palcibiblib (I can’t spell it) Anastrosole Zometa and Calichew since diagnosis straight to stage 4 in   March 2018. I’m scanned every three months and so far they have been encouraging. I work full time and feel fine. My blood counts are too low and times and the palciobiblib is delayed a week. I’m only on one week on one week off. It sounds as if your treatment plan is very similar - amiciclib is newer. We’re lucky to be on these new treatments. My advice would be keep going out and enjoying yourself. I’ve pretty much given up alcohol as the nurse advised me to do that to give the treatment every chance of working. I also eat healthily. A lovely lady on the forum has been very helpful to me and she advised diet changes. All I can say if it’s any help is that I’m over a year in and feel fine x



Thanks Anne that’s really good to hear xx

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Hello. Sorry to hear you’re joining us but welcome. It’s a helpful place I find. I have mets in my bones. I’ve been on Palcibiblib (I can’t spell it) Anastrosole Zometa and Calichew since diagnosis straight to stage 4 in   March 2018. I’m scanned every three months and so far they have been encouraging. I work full time and feel fine. My blood counts are too low and times and the palciobiblib is delayed a week. I’m only on one week on one week off. It sounds as if your treatment plan is very similar - amiciclib is newer. We’re lucky to be on these new treatments. My advice would be keep going out and enjoying yourself. I’ve pretty much given up alcohol as the nurse advised me to do that to give the treatment every chance of working. I also eat healthily. A lovely lady on the forum has been very helpful to me and she advised diet changes. All I can say if it’s any help is that I’m over a year in and feel fine x

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Results day yesterday, lost count how many vertebrae affected but don’t think there were many that weren't! Also on skull, pelvis and concern about left hip so booked for X-ray. Good news is no organs affected (brain not scanned though) I have no symptoms whatsoever which I am grateful for. Starting Abemaciclib, Faslodex and Denosumab on 5th August. 

Would love to hear some more details from all you lovely long timers as I really hope to be here in 10 years and beyond! 

How old were you when diagnosed, I’m 58, had stage 2 6 years ago, new stage 2 diagnosis 8 weeks ago then secondary (so stage 4) 4 weeks ago. 

What treatments have you had over the years and do you follow any special diets? I am a healthy eater who likes treats too, I also have a very busy social life and like a drink at weekends but wondering if I need to drop the treats and alcohol. 

Onc said not to worry about fad diets as it’s stressful enough dealing with the cancer, great to hear but then you wonder if she’s thinking you may not have long so enjoy it 😬.

Anyone else in Essex near Colchester that would like to meet up or start a meet up group? 

Thank you all, I have found this group invaluable and I’m sure I would be in a crumpled heap without it. Xx

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Hi Janette 

I don't get bone scans only CT of body neck to pelvis. Not had a MRI since 2009 of remaining breast and liver to check they were OK before I started chemo. 

Must give you confidence your oncologist has got everything in hand. 

Got my fingers crossed for you. 

Linda 

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Hi Linda, yes 3 monthly CT and she has now swapped the bone scans to MRIs now too, my markers have been slowly creeping up but she said she wasn’t worried as scans were stable.

janette xx

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Hi Janette 

Good luck for Thursday. Hope Letrozole keeps working for you. 

Yes for me the uncertainty of what to expect with new treatment . I will keep you posted how I get on. 

Do you get scanned every 3 months as it does not seem that long ago but it must be. 

Weather glorious today. 

Linda 

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Hi Linda, sorry to hear tamoxifen has stopped working for you, good luck with your new treatment. 

It’s results day for me on Thursday, it never gets easier does it!! I’ve been stable on letrozole now for coming up to 4 years so I’m conscious of the fact that my time on it could soon be coming to an end! 

Hello to all the other ladies on here, good luck with treatments and any results.

hugs Janette x

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Hi Funnyface

I forgot to ask you last week when you mentioned you had been on Navelbine for 5 years which is amazing.  Did you get many side effects if any what were they if you dont mind me asking. 

As you know I am taking it in tablet form. 

Thanks

Linda 

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Hi Channie 

Thank you for your reply . I have been on Denosumab for about 5 years now and as far as I am aware there is only a set dose. I have mine monthly. 

If I were you I would definitely press for a density scan it is different to a bone scan. Last bone scan I had was Jan 2014. 

Linda 

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PS. Funnyface, I too had to have screws and plates operated on my ankle it was such a bad break. I'm so scared to walk when it comes to it. Gonna need loads of physio. 

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Hi Linda/Funny face

6-12 weeks to heal my ankles :-( just stuck at home at the moment with Netflix unless I go out to hospital for my appointments, which is a challenge. 

They did have cold cap available but I couldn't endure it. Was freezing! 

It's scary how brittle our bones are. Funny face can't believe you got hiccups and broke your back! Omg. And how they couldn't pin point your diagnosis on it. I wonder if my bones are compromised on Exemestane. As I been fine up to now. 

I have had many bone scans before but they never said how my density was directly I will question more on my next appointment in August. I'm on denosumab also which helps strengthen the bones, but maybe dosage needs to be increased I dunno. Also take calcium and vitamin D supplements. 

 

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Channel, I broke my back in two places from having hic-ups for an hour. I had to have kyphoplasty (pinned and cemented). CT had said I had cancer in it. MRI said osteoporosis. Bone scan was questionable. Dexa scan said I didn't have osteoporosis. Orthopaedic surgeon said I had osteoporosis. So not sure why it broke. FF

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Hi Channie

I remember now you did mention about your ankle the other day. Very scary to think our bones are that fragile they can break so easily. Have they said how long it will take to heal? 

Have you never had a bone density scan? I have only had one a dexa scan where they scan your spine. Mind it has got to 5 years or more since I had it. Yes I would definitely press for one. 

Did they not have cold cap available at your hospital then? Mind it was uncomfortable but after about. 10 minutes I got used to it. 

Pleased to hear Navelbine did not affect your hair although it is no guarantee but it is really nice to hear. 

Hope you get more mobile soon. Must be awful being stuck in during the summer. 

Linda 

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Oh and navelbine didnt affect my hair. It was fine. I was never able to use cold cap so lucky you could. 

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Hi Linda, 

 

I'm not mobile as I've fractured my ankle and sprained the other foot too. Must be cancer related, as I know my bones aren't the same anymore and Exemestane can cause brittle bones leading to fractures. I'd need onc to measure my bone density and ask her advice. As it wasnt like I tripped or fell over or anything, I simply got up to walk and heard 2 or 3 loud cracks and collapsed on the floor! I was in total shock. My bones are just not the same anymore. 

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Hi Channie 

Sorry to hear you are not very mobile at the moment . If you don't mind me asking is it cancer related? 

Thank you for letting me know regarding tablets. When I am at chemo unit on Tuesday I am going to ask how often I will attending. It was all abit vague last week. 

Can I ask did the tablets effect your hair as one of the side effects can cause hair thinning. I did cold cap when I was on taxol. It did thin but I did not loose it all. It is nice and thick now I would hate to think it is going to affect it again now. 

 

Funny face

Got fingers crossed CT scan is OK and you are able to stay on EE. 

I tend to have to wait for a month for CT results. It is the worry waiting that is the worst. 

Nice weekend ladies. 

Linda 

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Hi Linda, 

I cant remember what grade mine was and my letters are downstairs at the moment (not very mobile at the moment). I took navelbine once a week for 2 weeks then had a week off. It was always on the second week that I got side effects. Hope yours goes ok and you get none. Keep us posted xx

 

Hi Funnyface, 

Best of luck for your results. Hope you get good news and that meds are working still. Keep us posted xx. 

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Yes ladies, I'm still on E & E. I just had a CT today and have an appointment with my oncologist realty August for results. There was a possibility that treatment has failed so will find out soon. I have been on it for 26 months. I used to get my results in 2 days but have to wait longer since my onc is at a different facility than where I got my CT. Enjoy your weekend. FF

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Hi Channie

Don't mind you asking about my age. I was 57 at diagnosis  I had regular mammograms but unfortunately mine was lobular which does not show up on mammograms as it starts off  as soft tissue rather than a lump. Had one in 2008 then in July 2009 I noticed a slight indentation the rest is history. 

So young to be facing all this. Do you know what grade yours was? Mine was grade 2.  Regarding Navelbine I take 110mg once a week for 3 weeks then have a week. Did you take it for a week then a week off? 

In one respect just as well the fluid was checked. 

Must have been really hard having such awful muscle and joint pains. I will just have to wait and see at the end of the day quality of life rather than quantity is the most in important. 

Linda 

 

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Hi Linda, 

I was on letrozole too forgot about that one. It didnt work for long either. 

I used to be HER2 negative but they found it changed to positive when they biopsy me on my lung fluid drainage in Oct 2018, so I started Herceptin in Dec 2018. 

On navelbine, I had side effects from the second tablet only, each time I took it I was nauseous and had terrible joint pains for a week. I had to be in bed. Then gradually subsides and you get a week break before starting again. Hope you don't get this though. 

Yes was in total shock being diagnosed with secondary as was all clear they said they caught it all at primary, I even had lymph nodes removed underarm. But I started getting bad bone pains in my back after a year and pushed for scans, they eventually gave me a bone scan which led to the diagnosis. 

I was only 41yrs old on primary diagnosis. I'm now 47. How old were you on diagnosis if you don't mind me asking? Xx

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Hi Channie

Thank you for your reply.  I was diagnosed with breast cancer and bone mets at same time 2009. Had chemo then radiotherapy  Match 2010 started on Letrozole which worked for 4 years. Everolimus is a chemo tablet which is often prescribed along side exemestane. Had cape in October 2017 which worked until July 2018. I have only just started Navelbine.  You managed to take it for 4 months what were your side effects like . Your cancer must ER positive and HER2 positive which gives you more options. Must have been such a shock in 2016 to get diagnoised with bone mets since your breast cancer must have been caught early. Sounds like you are young as well. Yes tamoxifen only worked for 8 months. 

Once again thank you. 

Linda