Bone mets - please join in (Part 2)

Shock an understatement, symptoms, burning pain between shoulder blades, achy pain in lumbar area, slight altered sensation in never regions, bowel movements, no real feeling, thats what prompted myself to walk into A&E, gut feeling something wasnt right, gp said osteo symptoms. Show up as bone mets, was offered radiotherapy for pain management, but ive put that on hold for when i need it in the future.
I dont mind answering any questions you might have, if i can

At the moment just take each day as it comes

My upper arm has been painful for 6 months.
Then I started having trouble lifting it up to steering wheel and to change gear when driving.
Tried to get a GP appointment which took 4 weeks. Another 2 weeks to get X-ray, then another 4 weeks to CT scan appointment which is tomorrow.
All the while pain is getting worse and ‘the thing’ must be spreading.
Re radiotherapy, is that used for shrinking the tumours, pain relief or both?

Hope everything goes well today with your CT scan. Radiotherapy does both, ive been told. Only radiotherapy ive had was back in 2021 after my breast cancer surgery 5x intense sessions 26gy spread over 7 days.
Sending hugs to you

Hello. I’m new here! I was diagnosed with BC Dec 2023 and after countless scans had a masectomy and further surgery in March and April 2024, only to be told 1 day prior to chemo in July that I had secondary cancer in my bones - and they think it was there all along :flushed: so mets in bones - extensive in “trunk” is the most I’ve been told but I know for sure it’s all the spine, due to numerous spine MRIs. So on letrozole, ribiciclin and denosumab. Only have a stiff lower back - but put that down to lots of running and having a desk job. I’m only 49 years old so very keen to read positive stories so can see daughter grow up.
Any tips for exercises and all round positively v welcome, and equally I’d like to support other who may be behind me on this journey x

I too am am on three months xgeva . First Cape tablets tonight . Let us know how you get on on the new E-E Treatment. My oncologist told me that if Cape doesn’t work or I can’t handle side effects that’s what I would be offered . I’ve been going through lines of treatment rather fast . I hope all goes well for you. It sounds like you’re on a similar journey.

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Hello, I had primary stage 1 in Nov 22 and got diagnosed with secondary Mar 24. In the spine, I also just had a back ache - which I put down to the effects of radiotherapy. It’s absolutely devastating to receive a diagnosis isn’t it? I’ve found comfort from people on this forum but the sense of it all being so unfair, when a lot of my friends/family are cancer free some 15 years later, is tough. I’m swinging between giving up work (to do the things I want) or carrying on as it’s a great distraction!

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Hi there and sorry that we are in the same boat. Yes it is the worst news ever and even though I don’t want to feel sorry for myself I do feel “too young” but I guess there is no such thing unfortunately. I’m currently on sick leave but am already keen to stop work. It’s always been a massive part of my life and really loved it but equally I’d rather have “my” time now so trying to work out how I can make that happen when way off retirement age/ pension access / practical stuff etc. I guess these are all big decisions and don’t need to be taken quickly. Just when we are ready x

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Hi Hope4441, I am still on here, I ended up in the hospital last Tuesday for 1 night the 3 Ribociclib didn’t agree with me and I had awful awful indigestion couldn’t keep liquids down plus my blood pressure was sky high had a lovely pharmacist call me and has reduced my dose down to 1 instead of 3 (I only took them for 4 days) I am starting the 1 tablet on Monday and I am praying that there are no issues
Did you have your appointment/scan ?
I am feeling so comforted by this page you are all amazing :two_hearts:

I also take comfort in all your journeys!
I’m still on “regular checks” mode, no other medication apart from tamoxifen.
I’ll be having the next one (bloods + CT) in about 3 weeks and I’m a bit aprehensive, since 3 months ago the bloods said my cancer markers were elevated - but the oncologist said it was still ok not to do anything…

The 1 year anniversary of my secondary diagnosis is coming up at the end of the month and that’s another date that’s been on my mind.

Although to be fair, I tend to forget sometimes I’ve got it, since my dad’s got dementia and that’s filling my mind all the time :frowning:

Hi rascal,
Hope you are feeling better now.
I did have my CT scan, followed by MRI spine, MRI liver and liver biopsy during an unexpected 4 night stay in hospital!
Long story short, I have Mets in my liver, lungs, shoulder, spine, sacrum etc etc and a clot on my lung to top it all off.
Feeling terrified and pretty hopeless.
Awaiting orthopaedic opinion to see if I need surgical stabilisation of my humerus, before radiotherapy and an Oncology appointment to get all results and, hopefully, some kind of treatment plan.

Oh Hope4441 bless you that must have been a terrible shock for you but as we read on this page there are so many positive stories with multiple mets but the waiting is the worst, once you know what you are dealing with and the treatment they are going to give you it will feel more positive, sounds like you have been through such a lot xx

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Thank you for your kind words, rascal.
I can safely say it’s been the worst week of my life!
I really wasn’t expecting all this after 13 years. Xx

I totally get how you must be feeling this disease is relentless but we cannot give in to it, thinking of you and please keep us posted on your journey xx
I am heading to A&E shortly as I have come out in a rash and have been advised by the hotline to go there today xx

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Relentless is a very good word to describe it!
Sorry to hear about your rash. Hoping you have a very short wait in A&E and that they can get on top of it with antihistamines :crossed_fingers:t2:xxxx

Thank you all good not sure what’s caused it but they have given antihistamines

We can do this Hope4441 right behind you xx