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Hi, secondary breast cancer spread to bones

UNCWmom
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Hi I was diagnosed October 22, 2 weeks later had multiple blood clots on the lungs and spinal cord compression.. taking ribociclib as a targeted therapy & letrazol as a hormone blocker. Pain is mostly under control although I often suffer badly with joint pain and I am sleeping a lot in the mornings so have started to reduce my morphine intake slowly under medical supervision in order to find a better balance.but I hardly sleep at night.

Does anyone out there have anything similar as I have no clue what to expect how this thing is going to play out? I've been told on average, women respond well to this ribociclib and survive 2 to 5 years. But I know nothing much else.

Am really struggling with leaving my daughter (who's lost almost all family) and my younger baby brother (who hàs had a breakdown due to my diagnosis) it is breaking my heart that I've caused him to be so ill. I can't change my situation in order to make him better. Is there any research being done or are there trials/other treatments? I'm in south Wales.

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    Hi UNCWmom,

    I'm really sorry you have been diagnosed with SBC, I was officially diagnosed last September after a couple of  months of tests I have SBC in the lungs, spine and pelvis it came as a complete shock as my primary was 23 years ago I had developed a slight dry cough nothing major but just a bit irritating. After a few contacts with the GP i finally was sent for a x-ray the x-ray dept. sent me immediately round to A&E where they did a CT scan, it was found that I had fluid around the lung and mets to my lungs and bones I had the fluid drained and sent home to await t contact from the oncology team for appointments and biopsy. and I started treatment in October. I am also on Ribociclib, Letrozole and a Debosumab injection once a month. I am having my first CT scam since starting treatment next week so hoping that the treatment is working. I haven't really been told a prognosis but like you have been told that there has been good results with this treatment, my BCN said not to look at anything on google and it is outdated an incorrect but you just cant help yourself really!   

    I'm sorry that your diagnosis has caused so much pain for your family but hopefully they are managing to support you. My husband has been my rock and given me a reason to live at first I just stayed in bed and cried it was so hard to come to terms with but I feel I am coping a lot better now. My BCN said some women are living quite a normal life on treatment for many years which gives me hope. 

    Please take care of yourself & know that you are not alone on this journey  xx 

  • Offline in reply to Martello

    Thanks for your reply and I took am sorry to hear of your diagnosis. It's still all so raw for you I'm sure. I thought I'd come to terms with things until now and my brother becoming ill just sent me spiralling again. It's so very real and on times I fear it's not far off. But as you say, they keep telling me at the hospital that I should be better than I am and I don't know why I'm not better. I am on long term sick from work because I can't maintain the high speed of mental capacity for my job so my employers want me to go sick. But at the same time, I hardly hear from anyone. I've only spoken to one of the partners twice, an office manager a few times when he wants a sick note but I've not heard from any staff member out of 40 something in the office, or the other 3 partners. It's been very isolating and I feel like I've done something wrong! They know I live alone and unfortunately, although both my daughter and brother live close by, I don't see them very often. I have a carer in the morning to help me wash and dress and in the evening. Lately I've lost all interest/ability to cook nice meals, I'm living off tinned soups, but have a good meal when I go to day hospice once a week. I'm lucky to have that otherwise I wouldn't see anyone. I'm only 54 but feel as if my world has caved in. Can only go out with a carer as I've lost confidence to go out alone. But a year ago I never thought I'd ever leave the house again as I couldn't walk or do anything for myself. My journey to diagnosis took a year, first starting with chest pain after catching flu and coughing. They couldn't find my breast lump, it took a mammogram as ultrasounds, x-rays, CT scans failed to see it. Had I been sent for a mammogram as planned when I turned 50, it probably would have been caught before spreading. But COVID caused the delay with mammograms, the hospital lost my x-rays and several GP's didn't mark any tests as urgent. It took seeing the last GP in the surgery to take it seriously. By which time I could no longer walk or get up the stairs, leave the house or cook.

    I believe the Welsh government have not funded any research into this particular cancer so I guess there is no hope, but I want to ask in case there is some research somewhere that might give me a little hope. It's not for me, it's for my tiny family who I desperately don't want to abandon. 

    I hope we both find some answers, some peace and a better time ahead. God bless xx

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