Breast cancer in the bone

I am 73 and was first diagnosed with breast cancer when I was 39.  I then went on to have two lumpectomies and when I was 51 a mastectomy and radiotherapy, right side.  When I was 70 found a lump on my breast bone, eventually had a second mastectomy and radiotherapy.  Found out last November that I now had bone cancer, incurable.  I am on Palbociclib in tablet form  which is an alternative therapy. 21 days 7 off.  I cannot take the 21 days it is too much for my body to cope with.  I go to see my consultant a week today and I am going to tell him that I will take 14 days but then an alternative treatment or lower dosage must be given.  He did tell me at one meeting that he did not want me to suffer, we shall see how it goes down.

  • Hi Sammirocky I am sorry to hear about your diagnosis.  I had breast cancer when I was 47 and had chemo, radiotherapy and tamoxifen/letrazole for five years.  It has now come back after 12 years and have bone mets in skull, spine, ribs pelvis etc.  It is treatable not cureable.  I am on Ribociclib which I think is similar to Palbociclib and have it for three weeks and then one week off.  I think if you have bad side effects or it is too much they can reduce your dose.  I hope you get the result you are looking for next Monday.  Take care.

    Lee.

  • Thank you I will ask him if I can change drugs and, if so, whether the results will be the same.  What side effects do you have on your drugs?

  • Hi Sammirocky I have only been on Ribociclib since December 2024.  The only real side effect so far is a terrible rash which is driving me mad.  The oncologist said she would speak to my consultant about lowering the dose, but not heard anything yet.  The oncologist can probably lower your dose of Palbociclib.  Let me know how you get on next Monday

    Lee x

  • Hi Lee

    Quite positive news as the Consultant says I am stable.  He wants me to try one more month on 21 tablets but if I can't cope after 18 days as usual he will give me a lower dose for a month or two to see how I get on.  Just on 15th tablet today so we shall see if I can cope.  I hope you can get your tablet changed, is your Macmillan nurse proactive with you.  I must say mine is brilliant so maybe speak to her first.  I speak to mine all the time and she answers all my questions.  As my Consultant said, "we are not here to make you suffer more than necessary".  All the best, Linda

  • Hi Linda that is great you have a stable Mable.  I dont have a Macmillan nurse and my breast care nurse is non contactable  just have to leave a message on answer phone and hope she rings back .  What other medication are you on at the moment?  Take care and have a good day.

    Lee x

  • Hi there, I have now been 2 months on a reduced dose of my tablets and feel much better, I do not even need the sickness tablets that I used to have to take.  I am still stable at the moment, long may it continue, I have even been on holiday which I thought I would never do again.  I have 2 Fulvestrant injections in my buttocks every 4 weeks, through a very thick needle, depending on the nurse I have encountered real problems with these.  Some nurses are gentle and take their time, others just want to get it over with as soon as possible which gives pain to the patient.  Do you have these?  I cannot find anyone on this forum who has mentioned them.  

    I am sorry you do not have a Macmillan nurse on the phone, I could not do without mine she is amazing.  I was told everyone should have one to talk to, have you tried contacting them direct?  I hope you are stable now and are not finding life too hard, all the best, Linda

  • Hi Linda,  so glad to hear that you are still stable and that you can cope on the reduced dose of tablet.  I have oncology appointment on Wednesday so feeling nervous as he has called me in due to a recent MRI and CT scan.  I don't have fulvestrant injections but have denosumab injections every four weeks, I have these in the stomach which I prefer to buttocks.  I am also glad to read that you have been on holiday,  thats amazing, we are hoping to go to Portugal in September and Iceland in February, fingers crossed.  I think this is going to be our new normal.  I have the number now for the Macmillan nurse but havent called her yet.  Sending you big hugs.

    Lee x