breast cancer and bone mets

Hi all.  I was diagnosed with breast cancer 5 years ago, had the chemo, mastectomy and radiotherapy and the usual meds for oestrogen +ve cancer.  1 yr ago i was diagnosed with bone metastases while having my much delayed reconstruction surgery (seriously, thank you Covid for that or id be in a different situation now) when I had a CT scan post op cos the docs thought I might have had a clot/  No clot but a C5 metastases.  I was totally symptom free which is why i'm grateful for the delay in surgery or id still be none the wiser.  I was taking abemaciclib initially 150mg twice daily but had to be reduced to 100mg due to the most HORRENDOUS diarrhoea, 3 monthly leurprorelin injections which are quite uncomfortable but now have them in my abdomen around the surgery site which is numb so....bonus?  and 4 weekly inj of Faslodex 1 injection into both bum muscles which left a constantly bruised and itchy feeling and as soon as it died down, next dose was due YaY!

Through all that Im still working long shifts and looking after the house etc. struggling with the diarrhoea.  Every bag I possess had loperamide in it.  I found that taking just 1 before going our made such a difference and if staying at home, only taking it after bouts (like it says in the book lol). It still wasnt great but i was pretty much living a normal life with frequent medical visits interspersed, CT scans bloods, jabs etc/  All seemed to be going ok, despite the brittle nails, and what the sweet jezus is my hair doing??  Still symptom free, BUT I just had a nuclear medicine bone scan and ..

and its worse.  Several vertebrae and almost all my left pelvis soooo now im off the 4 weekly jabs and the horrible abemaciclib (silver linings anyone?)  Have had a blood test to see if i make enough of something called DPD (not the dedicated parcel delivery people) and if so i'm getting started on a chemo called Capecitabine 2 weeks on 1 week off.  

Now after 5 years of being pretty positive about things, feeling generally well, I have to confess....I'm absolutely bricking it.   I have no clue obviously how the Cap is going to affect me, the first question the doc at my appointment asked was if I had any hip pain.  I didnt but now 2 days later of course I do.  And various points on my back where I know the mets are living. I have had to take a few days off work just to process it all, this essay is part of that processing...sorry...

Im scared of pain, im scared my vertebrae will collapse and i'll die from suffocation, 

Anyone have any words of wisdom? advice? about the Capecitabine or anything lese related to bone mets?

Thank you and especially for reading.

  • Hi Catspaw, 

    Thank you for coming here and sharing your story. Sometimes you just need those few days off to process everything so you did well to take a little break from work and coming here is also a good way to offload and try to make sense of your situation. Poor you, you have been through a lot and suffered some rather unpleasant side effects from the abemaciclib and the injections. It must have been difficult to still manage to work through this and do every day house tasks while trying to manage the diarrhoea. I am so sorry to hear that the latest bone scan revealed that it is worse and yet your sense of humour and wit shines through your post despite everything you are having to deal with, for example when you mention that DPD is not the dedicated parcel delivery people. So have you heard back yet as to whether you make enough DPD? We have some useful information on our website on capecitabine which might be of interest to you if you end up getting this treatment. You will find out more there about how capecitabine works and possible side effects associated with this treatment. 

    As you noticed hip and back pain now which wasn't there just two days earlier when you saw the doctor, I would perhaps get in touch with the doctor again and mention that you are now noticing pain just so they are aware of it and so that they can help you too finding adequate pain relief if you need it. It's also a good idea to share with them your fears about your vertebrae collapsing or anything that is making you worried at the moment. 

    Our cancer nurses also have a helpline you can ring on this free number 0808 800 4040 - it is open Monday to Friday from 9am to 5pm (except for bank holidays) so don't hesitate to give them a call if you would like to talk to someone about this and get some advice. 

    There will also be other members of our community who have been in a similar place and had a breast cancer diagnosis with bone mets and I hope that they will be along soon to share their story with you as it does help to talk to others who understand what you are going through at the moment. 

    I just wanted you to know we are all here for you anytime you need to talk. 

    Best wishes, 

    Lucie, Cancer Chat Moderator