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?
debbie (daisyjane181) xx
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?
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
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.
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
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.
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
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
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
Digital Community Officer
Dear Red, responders, and anyone else reading this,
I was diagnosed with secondaries in June and I'm finding it really tough. I feel I'm far too young to have to face not seeing my children grow up. I know there's lots of us out there diagnosed younger and it's so terrible when you are otherwise fit, energetic and healthy, leading a busy life, to be blown away by this.
Too little focus and funding is aimed at us because we're incurable. Those with primary still live in terrible fear of recurrence (I was there 2011-2015 and I'm not intending to knock anyone here). But there are many more of them with energy to raise awareness for the pink cause and hope of recovery. We currently have no hope of long term survival and not long ago were sent away to make memory boxes.
PLEASE TAKE ACTION:
We really need to all get going on Twitter and raise awareness of Second Hope, the charity specifically set up by volunteers for us. Look on the Bone Mets thread where it was recently highlighted by JulieD: seondhope.org.uk
ONE THOUSAND OF US DIE EVERY MONTH:
Everyone please get on it and put as much spare energy as you can muster into raising Second Hope's profile and our cause. Only together can we can truly improve the situation for ourselves and others.
Big love to all.
Hi Andrea. At the moment it has only spread to my acromion. I am on Vinorelbine chemo, Denosumab and Herceptin. I was in a bit of pain but it is much better now. How long have you had these mets? Red
Hi Red, I have secondary breast cancer that has spread to my left scapula, left femur, ribs and T6 vertebra in my spine. What treatment are you on for your bone Mets? I am on Denosumab an injection of a monoclonal antibody that turns off the Rank Ligand gene that causes bone destruction. You should take vitamin D especially D3 with calcium. Where has it spread to, are you in pain?
Thanks Mermaid. I have joined "Bone Mets Please Join In" and am amazed at how many ladies are living with this monster. I hope I will be in a position soon to offer support to others as people have already been so helpful to me. Xx
Welcome to the forum you will find a lot of love, support and a wealth of info from Ladies here. There is a thread under the title "Living with secondary Breast Cancer" called "Bone Mets please join in" that's where you can find us all. I was diagnosed with multiple bone mets in December and it was 16 years after my primary so quite a shock. I was devastated but the girls on here said I would feel better once I had a treatment plan in place and it starts to work. They were so right and I am now in a much better frame of mind. I am on exemestane a hormone treatment, and a monthly injection to the tummy of a bone strengthner denosumab.
Be kind to yourself and join in the chat
Hi All. I've just been diagnosed with bone mets and feeling quite frightened about the future. Would love to hear from anyone who's living with this diagnosis.