Sorry about that. I also had extensive bone mets, to most of my scheleton and spine, and skull involved, with 3 collapsed vertebrae. Fortunately with ribociclib and letrozole they were all negative at PET, and most actually disapper on tc scan too. I read in many places how movement actually help too much with bone metastasis so when I was confined in bed (days and days) for the collapsed vertebrae I tryed to move what I coul move, my harms, my legs…than slowly get up half hour a day, than one, move in my house back and forth with the help of a sort of trolley, than using 2 canes and a bust and a neck collar, than walk without canes, than started to exit in my yard, than in the street again, slowly jogging…than started to trail running and yoga again! I couldn’t belive it, I yhough I would never walk again. For sure part was the medicines, but also exercise is magical for bones metastasis, as long as you do it in a safe manner. Blood get more calcium to bones, and helthy bones cells replace sick cancer cells. If you have access to an oncoligic phisioterapist you may want to ask some advices. I know with the pain and the medicines sometimes is difficult to get into physical activity, but it really help, just as much as medicines do.
I don’t know your abits, so you may already do some activities, but it is just a personal suggestion to anybodywith bones metastasis!
Also I saw this interesting video for anybody interested in bones metastasis topic:
Very interesting. I did alot at the gym prior and post primary diagnosis to strengthen my bones. I love the Les Mills Combat and Body Pump classes.
Post secondard diagnosis with Bone Mets i was uncertain as to whether i should continue. I did as i loved the classes but “toned it down”.
I also started walking during COVID as the gym closed and realised how much i enjoyed it and how lucky i was to live just outside the Yorkshire Dales national park. I recently got a foster dog which means i’m walking even more (and chasing squirrels) so i appear to be doing all the right things.
Fingers crossed i’m around to benefit from an MRNA cancer vaccine
@Yorkshire_Tyke
Hi Thank you for your post.
Can you tell me more about your vaccine? For what type of cancer work?
What is is and how it work?
I’m her2 negative and estrogen positive, now on capecitabine, after liver recurrence…
Sorry. I was meaning i hope i’m around to benefrom a vaccine once they exist. BioNtech have UK UK Gov’t funding to work on cancer vaccines. But thats a 2024 or 25, so will need to go through trials.
I’m pretty sure lots of companies across the world are working on vaccines, but COVID proved MRNA worked so was a big step forward.
Thankfully it’s just in my spine, around one vertebrae (L3). I’ve had spinal surgery 4 weeks ago to fix the pain, recovering well now, and today I had the initial radiotherapy appointment, to prepare everything. I’ll have 5 sessions starting next Thursday and I wonder how that will be, since the first time I only had chemo.
After the diagnosis my consultant changed me from Letrozole (which I had started taking about a year ago, after 5 years on Tamoxifen) to Exemestane. Anyone on this one? Apparently the letrozole didn’t work, given the met… I just wish there was something that checked effectiveness of specific hormone therapy medication before it got to the point of seeing the actual cancer returning
Next week I’ll have an appointment with the oncologist to see more/change medication, let’s see what’s coming.
Everything feels quite new at the moment. Up until now I was focused on just getting over the incredible constant pain, but now cancer has become the centrepoint of my thoughts… Especially because others don’t really get it.
I need to accept that from now on for the rest of my life I am “living with cancer”
Hi, yes just letrozole and bone strengthener Zometa (similar to Denosumab). I have had some radiotherapy too in the past but currently just Letrozole.
How are you getting on with treatment? Not too many side effects I hope
Hi Mindy, I’m not sure of the name, maybe ‘spinal decompression’?
My tumour is attached to the vertebrae and pressuring on the main nerve, causing pain from the hips down to the knees, basically sciatica, so they cut part of the vertebrae, put ‘bone cement’ and 4 big screws, and now the pain has gone.
The radiotherapy is to try to destroy what’s left and hold on it growing and spreading, I think.
I wonder if it’s related to the doctors/area, the message that you get? I’m in West Yorkshire, the spinal surgeons are absolutely amazing.
So to confirm what I said about “you only discover that medication X isn’t working when the cancer appears again”, my oncologist put me back on Tamoxifen! She was also pretty annoyed with the situation, and said that T would be better for now.
I’m not having anything extra, she wants to ‘save’ the other drugs for when it returns again, saying that for now it seems contained, with the surgery and the radiotherapy.
I’ll be having blood tests every 3 months and scans every 6.
I suppose it’s a good result?
I’m am similar. Extensive bone bets, spine, rib and femurs. I have had a rod and pins inserted into my femur bone. Followed up with radiation on my femur and spine.
Dx last November. I’m on Palbocyclip and a trial drug. With denosomab injections one a month. Not much pain at all after surgery and treatments which are working well. Take care.
I’m still here, better I ever felt in 2 and half year since diagnosis.
Switchet xgeva from mothly to every 3 months, because too much is bad for bones.
Everolimus+exemestane, my third line of therapy.
Taking my vit D and calcium and daily exercize to streighten my back muscle.
Hope everybody else is ok!
Back in 2021 diagnosed with invasive lobular breast cancer grade 2, no node involvement, 2 lumpectomies, tamoxifen, radiotherapy- 2years 9 months later in dec 2023, diagnosed with sbc of full skeleton, ribs, femours, large lesions in lumbar and measles like cancer covering the rest along with osteoarthritis in spine also. So 6 months in am on abmeciclib, fulvestrant and denosumab, due 2nd ct scan end of aug. So far, symptoms and side effects are manageable and the meds appear tobe working will know more in aug im sure. Have given up work, just cannot deal with the fatigue, completely zaps my limited energy.
I hate the feeling of not knowing what will happen next…
Your messages have given me hope and some reasurance that i will be around for sometime to come, but i know im at the early days stage at the moment
Hi Purplerose,
Gosh, that must have been a shock to find all those Mets.
Did you have any symptoms?
Mine are extensive in three bones in my left shoulder.
Could be anywhere and everywhere else as I’ve only had shoulder X-ray and MRI so far.
CT scan tomorrow. Do they show up bone Mets or just soft tissue Mets, I wonder?
Like you, I can’t stand the not knowing as I am a bit of a control freak.
Are you on your first line of treatment? Did they offer radiotherapy?
Sorry for all the questions. Xx
Congratulations 
