Bone mets - please join in (Part 2)

Continuing the discussion from Bone mets - please join in (Part 1) - #11471 by Hunniebee.

Previous discussions:

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Hi I’m sorry you’ve had this fiagnosis. It is a lot to get your head around. I just wanted to say hello and to try to give you some hope. I have been living with bone mets since March 2010 yes 13 years. I’ve had my ups and downs but am still here and happy

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Wow. You are inspiring Julie.
Can I ask where your Mets are? I have extensive bone Mets. Femur rod and pins now. :heart:

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I’m interested in this thread. I was told 4 weeks ago that I have bone mets in my spine and pelvis. Until then everything had been really positive since my initial Primary Breast cancer treatment earlier in the year so it has come as a bit of a shock. I am trying to focus on the here and now and getting used to the new treatment but I can’t help but think about what is going to happen in the years to come so be good to hear different peoples experiences, and share my own as time goes on x

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I’ve extensive bone mets, mainly ribs and spine. I haven’t got rods or anything like that though when I was originally diagnosed with bone mets I had radiotherapy on my spine as the mets were encroaching the spinal column. How are you coping?

Hi, me too!
I had my primary 7 years ago and I was diagnosed with bone mets in the spine 4 weeks ago. From the MRI and CT scan I did it looks like it’s only in one vertebrae (L3), so I guess I’m lucky, but the pain in my hips, upper legs and knees can be horrendous!
Is the knee pain linked to the pressure on the nerve or can you have mets on the knees too? I know they only did the exams from the neck to the hips, not the rest of the body…
I’m waiting to see the Spinal Surgeon in around 10 days and find out what the next steps are.

I really just want the big pain to go away and get my mobility back…

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At the moment physically I have relatively mild aches in my lower back and hips which I think are probably down to the zoladex and letrozole which are stopping my oestrogen as I am pre-menopausal. I am 3 weeks in to taking Ribociclib (whch has caused some hair loss) and starting denosunab next week so will see how that affects me. Then will have to see once I have my next follow up scans if it is working. Sounds from my oncologist that those drugs will be what they’ll keep me on as long they are working and side effects ok, before considering radiotherapy or chemotherapy.

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I was diagnosed with mets in ribs , sacrum and two vertebrae after 2 years on Letrozole . I had radiotherapy on my sacrum and lower spine to prevent nerve involvement. I am on fulvestrant injections and ribociclib now but after one month on Ribo had to have a month break due to low blood count . These are early days I guess but I do struggle with fatigue . I’m hoping that improves but has anyone found it improves ?

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Hi
Thank you for posting, giving so much uplifting hope and inspiring us to move forward today with a smile and positivity :smiling_face_with_three_hearts: I’d love to follow you and keep intouch. I have absolutely no idea how to friend or private message now the forum has been updated​:woman_shrugging:t2::woman_facepalming:t2: if anyone would like to help me navigate or be journey buddies please do get messaging :heart_eyes:

Hi, I was diagnosed from the beginning with Mets to my sternum, a right rib and spine at L4 and T11. I did 6 months of taxol, herceptin and perjeta. I’ve been on herceptin, perjeta, zoladex, anastrazole and zometa since April.

It’s very weird how it all works. I get a bone scan and pelvis/abdomen ct every 3 months and this last scan showed the rib had cleared up and the spine was lower in intensity but there’s a new spot on my iliac bone which they want to treat with radiation but they didn’t treat any of the others with radiation. I also don’t have any pain yet at all. It’s very confusing.

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Hi
I was diagnosed with bone mets in June 2018 (primary was diagnosed 2010). I’d been going to my GP for a couple of years with shoulder/back and finally a severe groin/hip pain and was fobbed off every time. It was my breast surgeon (during a check up for some recon work) who sent me for a bone scan and discovered I had extensive mets: spine front and back, sternum, shoulders, ribs, both hips and my pelvis and apparently deposits on my skull. I started on Fulvestrant and denosumab, had rads to my left hip which worked a treat then added Abemaciclib in March 2019.
I’ve been virtually pain free all this time and feeling great. Side effects have been minimal (diahorrea and fatigue the main ones). I was on 3 monthly MRI and CT scans, recently every 4 months due to stability, but unfortunately I’ve had some minimal disease progression and just started on my second line of treatment. Exemestane and Everolimus (plus denosumab still). So far I’m feeling great (sense of taste is going sadly but hey ho), I’m also weirdly much less fatigued, which had been bad recently. I’m guessing that should have been a warning that something was awry.
Bit of a long-winded post, apologies, but hopefully it helps put a positive spin on things. I’m still here and thriving after just over 5 years and I fully intend to have several more because I have a lot to do.
All the best
Sara

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Hi Sara,
Thank you so much for sharing your experience. It gave me a boost reading this to know that the treatment you have had has by the sound of it enabled you to continue to thrive in life for so many years. I am slowly adapting to my new norm of meds and hopsital visits and if I’m honest it is the unknown of how the cancer is going to develop and when which scares me the most. With it being in my lower spine I know at some point my mobilty is going to be affected but I also know no-one can predict that so I fully intend to continue living the best life I can in the meantime.
Thanks for the positivity, and I hope it all continues to go well for you x

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Good Afternoon,
I have discovered today, that my Breast Cancer is in my spine, at L2 in my Lumbar Spine, which caused a compression fracture, also small lesions seen in my Thoracic Spine at T8 and T11. My Breast Cancer is in my Right Breast, Lymph nodes are clear, as are my organs. I have today been started on a Hormone Blocker, Letrazole. I feel absolutely terrified, ive been like niagra falls all day ! I feel like thats it, its game over ! Xx

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It is scary and confusing and overwhelming when you first get a diagnosis. Youwill eventually find your way of coping and a new ‘normal’.
There are treatment options out there and new ones being researched. Try to hold on to hope.
I have been on Letrazole for my bone mets for 13 years now, it has been a fantastic drug for me. There are lots more of us living for years with mets so please don’t feel written off. I too thought my demise was close when diagnosed but here I am :wink: Give yourself time and space to take it on board and be gentle witj yourself x

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Hi,

You’ve done well on Letrozole. I’ve bren told yo expect it to work for me for 2 years or so.

Its true new drugs are being developed all the time, the news isn’t great at publishing this.

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I’m just hitting the 2 year mark with mets to skull and lower spine. Been on letrosol/Zometa/Abemaciclib and changed from Zometa to Denosumab due to cannulating issues. Had CT 6 days ago. I suspect it will show progression to shoulder blade as activity showed up on bone scan a few months ago.
I’ve managed well for 2 years but over the last week or so my bone pain has escalated in my known mets but also elsewhere. It is worsening on a daily basis and I’m not sure what to do.
Do I wait it out till results or do I escalate my concerns? Right now I feel that bone mets are worsening daily. Can things worsen this fast?
If I contact my team I’m
Not sure what they can do until results are known but I’m now struggling physically where only a week and a half ago I was coping well.

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I’d ring your BCN and raise your concerns. Oncologist may also want blood test doing.

Anyway CT results are not been done by the same person who does the scan, and they could have been out on strike. If you raise concerns hospital might be able to prioritise your report.

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Thank you all for sharing these experiences. I need to start anastrozole and am terrified to start.
I wake up every morning thinking of it and it hangs over my head, but I am so afraid of
possible side effects that may make my life worse when I feel well now.

After having read this, I think I would rather take the anastrozole than face life
with bone metastases. I didn’t realize it could involve so much more than the
legs.

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Thanks Yorkshire tyke. I’m in Glasgow so no strikes but CT results can still take a few weeks to be reported. I have a call planned for Thursday. I will raise my worries then. At the very least I’m hoping for a further biopsy for HER2 status to be determined as this is still unclear (Have had 2 diff tumours) but hoping a new treatment plan can be escalated.

Hi @Abby. I am taking Letrazole rather than Anastrozole but they seem to have similar side effects. You should be offered a DEXA scan before treatment to see what condition your bones are in as a base line. I was diagnosed with osteoporosis from the initial bone scan and was then treated for it along with the letrazole. I took it for 5 years and the only side effects were hot flushes. Now (many, many years later) I am on it again as I do have bone mets and if I had know this would happen I would definitely have opted to take the letrazole continuously. If the anastrozole disagrees with you, you can always change to something else, but I would give it a go. Interestingly, my cholesterol has gone down not up.
Best of luck to you - hope it all goes well. x