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Member
Posts: 895
Registered: ‎01-05-2012

Re: Newly diagnosed bone mets

Hi there, I'm newly diagnosed with mets. I had primary in 2009. Would love to chat with others in similar situation. I'm staying on exemestane and going to be having damobsame (however it's spelt) injections. Anyone else on this combo? How you finding it, how long has it been working for you. Tia
Member
Posts: 56
Registered: ‎18-05-2016

Re: Newly diagnosed bone mets

Hi deb

just saw your message. Not sure if you meant me or another Debbie but I'll reply anyway. Thank you for asking. Well today I have got to go for my first review ct scan after being diagnosed primary and secondary in May. Feeling very nervous right now but I won't get results until Thursday when I have to see oncologist. Been on Zoladex now for three months, bisphosphonates (Ibandronic acid) for 11 weeks and tamoxifen for 10 weeks. Hoping and praying they are doing something for me. I've had a few side effects but on the whole not too bad. Bit achy today but think that might be stress and anxiety building up.

hows everything going for you?

big hugs

debbie (daisyjane181) xx

Member
Posts: 119
Registered: ‎02-05-2016

Re: Newly diagnosed bone mets

How are you Debbie?
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Member
Posts: 1,415
Registered: ‎18-11-2015

Re: Newly diagnosed bone mets

Hi Avrelia,
Sorry you've had to join us on the forum but you've come to the right place. You'll get a lot of support here. When I was diagnosed with bone secondaries a year ago for the first month or two I would go to sleep crying and wake up the same way. I would read loads of horrible cancer websites and upset myself. But it is amazing what we learn to cope with and now most days while I still think about my health sometimes, I don't dwell on it. I just live in the day an don't think about the future. It isn't really a conscious choice, it just happened. I try to keep myself occupied by reading good books, watching loads of box sets and films and spending time with my family.
You sound like you have a very positive attitude but don't get angry at yourself if you don't always feel that way. Things will get easier when your treatment starts. Get all the help you can get. If you are in pain, tell your medical team and get effective treatment for it. There is nothing like pain to bring your mood down and stop you enjoying life.
I had EC 10 years when I had primary cancer. I coped fine with it but didn't enjoy losing my hair although I did have a really good wig. I got a really sore throat a few days after my first cycle and had to get antibiotics but that was the worst I felt physically during my treatment.
I don' t know if you work. I worked through my chemo (and I still work) and it helped me stay normal but it is really an individual choice. If you feel it will help you to carry on working, then give it a try but don' t force yourself to do anything. You don't need to prove anything to anyone.
Best wishes to you and hope your treatment goes well. Keep in touch. xxx
Member
Posts: 79
Registered: ‎25-07-2016

Re: Newly diagnosed bone mets

Hi, I am in the same club too I guess, I am 37 years old, have been just diagnosed with bone mets and feel quite uncertain of my future. lots of pictures in my mind, but for the time being I have decided to keep head up and fight. If you give up and desparation ovewhelms you will be dead already. Many hugs to all

P.P. Have not started chemo yet_EC one-has anyone been through it?

Member
Posts: 56
Registered: ‎18-05-2016

Re: Newly diagnosed bone mets

Hi artygirl

Dont think they're looking at surgery. Oncologist didn't seem to think they would put me through it. Guess if it's already spread then no point really. Really hoping hormone treatment works. I've been told a couple of times that as I've not had any previous treatment, what with getting primary and secondary diagnosed together, then hopefully my body should respond well. That's what I am aiming for anyway. I hope you feel more positive soon and we can keep in touch. Debbie xx

Member
Posts: 32
Registered: ‎14-07-2016

Re: Newly diagnosed bone mets

Hello Debbie

Thanks for your reply. What a terrible time you have had but you sound so positive which is great to hear. From what I have read ER + respond very well to the treatments you are having for your bones so hopefully in August you will see some stability. So glad treatments are not making you feel rough. Has surgery been discussed with you for primary. I know there are different schools of thought here. Btw I have had x2 chemos for primary but have ONC appointment 1/8 to discuss adjustments to treatment in view of mets.
Thanks once again for getting in touch. Once I have got my head round all of this I hope to be able to offer positive support.
xxxx
Member
Posts: 56
Registered: ‎18-05-2016

Re: Newly diagnosed bone mets

Hi artygirl

just read your message. I'm completely flummoxed over private messaging but not to worry.

my story began when I got called for my first ever mammogram in April 2016. Got recalled two weeks later and after further mammogram and two biopsies in one breast, got told I had invasive lobular oestrogen positive but her 2 negative. Had pet ct scan a week later and got told it had spread to spine so stage 4 bone mets. A week later again after full body bone scan got told mets were extensive. Absolutely devastated. To go from complete normal life to being told this is extremely hard to deal with. My oncologist has got me on monthly Zoladex injections of which I've now had three, Ibandronic acid bisphosphonates to strengthen moth eaten bones and tamoxifen which I've been on for eight weeks.

 

i had absolutely no symptoms of any of this going on. Since treatment started I get a few night sweats but luckily no flushes in day. I do get some joint aches predominantly in shoulders and neck. Did have a week of headaches at the beginning but they've gone now thank goodness. 

 

I absolutely refuse to let this 'condition' get in the way of what I want to do. I'm in the fortunate position of working only a few hours a week as I'm self employed. I've also been awarded pip payments which helps.

 

Due to go back to see oncologist in August which I am dreading I have to say. I guess I have to go though so can't dwell on it. Fingers crossed hormone treatment working that's what I want to hear.

 

just an extra note - I have just read the cancer conqueror by Greg Anderson and am now reading cancer 50 essential things. I personally found these books extremely uplifting and positive. Maybe try them.

 

i wish you much love and please please keep in touch. I don't know what part of country you are in but I am in east Anglia.

 

debbie xxx

Member
Posts: 32
Registered: ‎14-07-2016

Re: Newly diagnosed bone mets

This is for Debbie/Daisy Jane x
Member
Posts: 32
Registered: ‎14-07-2016

Re: Newly diagnosed bone mets

Hi there

I don't appear to have PM rights yet and sorry haven't replied to your message sooner. I'll be honest I am not coping at all. Had MRI for spot on pelvis and seeing ONC 1/8 but ONC almost certain mets. Where are yours and what treatment are you on. What type of BC do you have? Don't worry if would prefer to answer this as a PM.
X
Member
Posts: 1,415
Registered: ‎18-11-2015

Re: Newly diagnosed bone mets

Hi everyone
It took several weeks for personal messaging to be activated on my account. I think it is a security measure but you could try contacying the moderators to ask. xxx,
Member
Posts: 56
Registered: ‎18-05-2016

Re: Newly diagnosed bone mets

Hi artygirl

just seen your post. I'd love to be a buddy with you and help each other get through this journey. I will try and private message you. Do you know if your account is set up to do that yet? I ask because several other people don't seem to be allowing private messages. Not sure whether it's because they are new accounts. Anyhow I'll try and send you one now. Love Debbie x

Member
Posts: 94
Registered: ‎27-06-2016

Re: Newly diagnosed bone mets

Hi All.  Seems like there's quite a few of us newly diagnosed with bone mets (last month for me) - am here to 'chat' if anyone feels like it.

Much love and hope to you all.

Louise xx

Member
Posts: 32
Registered: ‎14-07-2016

Re: Newly diagnosed bone mets

Hello Daisy Jane
Hope you don't mind me getting in touch but we seem to be in similar situations. Diagnosed with BC a few weeks ago and then this morning told that abnormal area in pelvis picked up on bone scan ( having MRI scan to confirm). Btw my breast cancer is grade 2 er* her-
Just thought that we might be helpful buddies for each other.
xxxx
Member
Posts: 56
Registered: ‎18-05-2016

Re: Newly diagnosed bone mets

Hi.  Skippy I have just tried to send you a. Private. Message. But it appears your account. Isn't set up.  To receive them.  Can you have a look when you get a minute and I'll try again.  Debbie 

Member
Posts: 12
Registered: ‎14-06-2016

Re: Newly diagnosed bone mets

I've been diagnosed with bone mets I'm docetaxael chemo herceptin pertuzamab and the denosumab injection mine as spread to my ribs pelvis and skull would love to hear how everyone else copes with this x
Member
Posts: 56
Registered: ‎18-05-2016

Re: Newly diagnosed bone mets

Hi Red.  I was diagnosed with primary breast cancer with secondary bone mets in May.  2016.    I am here to talk if you like.    Big hug Debbie x

Member
Posts: 12
Registered: ‎14-06-2016

Re: Newly diagnosed bone mets

Hi red I've was diagnosed in May with bone mets if u would like to chat I know exactly how you feel xx
Community Manager
Posts: 1,988
Registered: ‎01-05-2012

Re: Newly diagnosed bone mets

Hi alockyer

 

I hope you have found the Bone Mets thread?  If anyone needs to search on the forum there is a search box in the top right hand corner of the page.  There is an empty rectangle box with a magnifying glass image in it.  Next to that is a drop down list so that you can either search on the board area, which is where we are at the moment, or you can choose to search the whole forum.  

 

Hope this helps everyone

 

Best wishes
Anna
Digital Community Officer

Community Champion
Posts: 3,098
Registered: ‎08-03-2015

Re: Newly diagnosed bone mets

Go to the breast cancer care forum and then to the secondary cancer section 😊