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.
Red x
Hello Red,
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
xxxx
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?
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.
X
Hi red I’ve was diagnosed in May with bone mets if u would like to chat I know exactly how you feel xx
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
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
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
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,
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
This is for Debbie/Daisy Jane x
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
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?
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
How are you Debbie?
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