I saw my oncologist last week. He wants to start me on Ribocilib, Letrazole and Denosumab once my leg wound had healed.
Hi all, recently diagnosed with bone mets and waiting to start treatment 
dr google has given me a 2 year expiry date and im struggling. I have a 3 ans 5 year old. Any advise??
Please donāt google! The stats are outdated and will just increase your anxiety, although I know itās easier said than done. I know there are lots of ladies on here with bone mets, some of whom have had them for many years. There are lots of options and Iām sure you will feel better once you start your treatment x
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I hope soā¦ Iām feeling incredibly overwhelmed
I completely understand - I was diagnosed with bone mets last August and felt like my world had fallen apart but I promise I am in a very different headspace now, feel so much more positive and am saying yes to lots of things I wouldnāt have done before. I found this forum so helpful when I was first diagnosed with SBC x
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Thank youā¦ can i ask how your treatment is going.
Iām not actually on active treatment at the moment as I had one lesion in my pelvis which was treated by SABR last year and has been stable on the scans since 
(had a scan yesterday so waiting for results!). I just take Letrozole and Denosumab injections but if anything changes on the scan will need to start active treatment
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Hi @K8ty,
So sorry to hear about your diagnosis, being told is such a shock and you do need to give yourself time to take it in, and also to settle on whatever treatment plan you are given.
I was diagnosed nearly two years ago with bone and liver mets. One thing I have learnt is that everyone is different but I found reading peopleās experiences on this forum really helpful.
I have bone mets in my spine and hip, and when first told I had been having back pains and my oncologist went into all the worst case scenarios including warning me of spine collapse and so I thought I was going to have to start coming to terms with constant pain, not being able to walk very well etc. BUT two years on none of that Iām living a very healthy life no back pain and my bone mets have been stable for the last 6 months. Unfortunately my liver hasnāt been quite as good which has led to a recent change in meds.
All I would say to you right now is deal with what is in front of you day by day as the first few months are hard mentally and may be physically when you start medication but there is a very good chance that youāll be able to settle on medication and adjust to be able to lead a near normal life for years so hold on to that, take things a day and a hospital appointment at a time and take joy in all the small things that make you happy right now.
Take care and all the best with your treatment x
Thank you. Iām finding it very hard to not think i now have an expiry date.
I completely understand and itās so much to get your head round but I promise it does get easier and wonāt always be the first thing you think about. I havenāt asked and donāt want to know anything like prognosis because I donāt think itās something that can be accurately predicted and treatments change all the time. Someone said to me āif you feel well today you will feel well tomorrowā which is what I try to think about when the negative thoughts creep in - I feel generally pretty well, Iām doing everything I want to be doing so I just try not to think too far ahead x
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Hello K8ty,
I was diagnosed with bone mets in June 2020. I was 39 and my children were 2 and 6. Five years on and Iāve only had reduction. I did have counselling to learn how to live with it.
If anything Iām living more now than before diagnosis. Nobody appreciates the little things with the children than me.
Please message with anything if you need help/advice.x
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Thank you so much for sharing. Can I ask what treatment you are on, and if you find it manageable with the children x
Of course. Iām on letrozole, palbociclib, zoladex and zoladronic acid. I do get tired and Iāve had to reduce what I do, largely in the evenings, but yes my children donāt miss out on anything. If anything they do more as Iām trying to over compensate.
Do you know your treatment plan yet?x
I started nab-paclitaxel yesterday with phesgo and bone strengtheners. Just hoping it works x
I think you must be HER2+ then. I think those drugs are well tolerated. All you can do is try and sleep well, eat well, exercise a little and make yourself the number one priority. Thatās all you can do. Weāre all here for you when you need it.x
Hi,
Iām having SABR treatment at the moment to treat 2 areas that are misbehaving. Nice to hear your treatment was successful.
Did you have any side effects? Iām due to have my 3rd out of 4 rounds today and i seem to be fine if a little more tired than normal.
E
Hi, no I didnāt really have any side effects at the time - an increase in pain following (might have been a couple of weeks after) but settled again pretty quickly. Maybe slightly more tired but nothing significant - it was all pretty tolerable to be honest. Hope all goes well for you x
My second oncology appointment got put back a week, then i received another appointment for the week after that, so i phoned and asked what was going on. Apparently the second one is with a radiologist to discuss radiotherapy. No mention of this previously. Constantly feel like Iām playing catch up and thereās not enough communication at the right time. Iām a retired healthcare professional, no idea how the rest of you manage!
Iād make it clear when you see the nurse that you like to know whatās going on and when. I did find this at the beginning, but now Iām five year in mine is all pretty routine apart from when something goes wrong but then I just have to spend some time sorting it. I hope you find out whatās going on soon.x
Hi.
I still have my cape tabs in the box. Having alot of UTI and breathlessness.
Not posted for a while. Seriously depressed. Fatigue is not managed. Iām in bed about 20 hours out of 24
Mets are multiple in spine.
Spread to ribs sternum neck lymph nodes pelvis and lungs.
I declined treatment. Still here after fifteen months ( l do have zoledronic acid infusions)
I really have lost the will to live
New oncologist in a couple of weeks
Iām not like you ladies. Iām a coward and a weak old woman xxx sending love 
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