Stage 4 Breast Cancer with bone mets

Hi, I had stage 2 breast cancer in 2014, had FEC, single mastectomy and radiotherapy. Started on tamoxifen. Switched to anistrozole Aug 2018. Was doing fine then November 2018 was told it’s back in my spine, rib, hip, shoulder and on my ovaries. Put back on tamoxifen and although by count went from 49 to 35 initially it then shot up to 83. Just started Faslodex, zoladex, denosumab and abemaciclib. Can’t seem to find much information about this treatment (just the fact sheets from the hospital) Has anyone else had this treatment? Would like to hear how you got on with it? How long have you been on it? Is it successful? Everything really. 

  • Hello ShazzerB, 

    I noticed you still hadn't received a reply and wanted to warmly welcome you to our forum. I am sorry to hear your breast cancer is back with bone mets and I hope your new treatment works well for you. You mention you have already received fact sheets from the hospital about these drugs but I thought I would add as well this page from our website which mentions abemaciclib and denosumab. We also have detailed information on our website on Zoladex (also named Goserelin) which you can access here. You can also read more about denosumab here and more details on fulvestrant (also called Faslodex) can be found here. Don't cancer drugs have the most complicated and unpronounceable names ;) ? 

    I know that no literature no matter how accurate or in depth replaces hearing from personal accounts or experiences, so I hope you will manage to talk to others on this forum who have had this drug combination. You have certainly come to the right place as we have countless wonderful ladies here who have had or are currently going through breast cancer treatment and I am sure they will be along shortly to share with you their breast cancer experience.  

    To give fate a little helping hand, I did a little forum search for you for others who have been on these drugs or on some of these drugs and have found for example this thread by [@eileenp]‍ who was due to start Denosumab 6 months ago or this one by [@Lifechanges]‍ . Similarly, [@shazza18]‍ asked about Faslodex on this thread and [@Foxdale]‍ ‍ 's thread here  as well as [@Lucy30]‍ 's comments might also be of interest to you. Finally, only a few days ago, [@vwills]‍ mentioned being on abemaciclib and Fulvestrant (Faslodex) and you can read her thread here

    So I hope you will soon be chatting to others here who have been on these drugs - do bear in mind though that everyone reacts to drugs differently and may have different side effects so if someone had a negative experience for example, it doesn't necessarily mean that the same will happen to you!

    Our nurses are also a good source of information so if you wanted to ask them more about these drugs or on your treatment, you can get in touch with them on this free number 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm. 

    I hope this helps a little! 

    Best wishes, 

    Lucie, Cancer Chat Moderator

     

  • Hi there . I’ve been on abemaciclib , fulvestron and zoladex now for a month. Side effects haven’t been too bad . No idea yet whether it’s working though I’m afraid. Good luck and hope the treatment is kind to you  xx

  • Hello ShazzerB

    as moderator Lucy has said I startet Denosumab  about 7 months ago, apart from that am only on Tamoxifen and had 3 lots ofconcentrated  radiotherapy for three different bone mets..wishing you all the best with your treatment.You can find more info online but I find all the lists of possible side effects of any drugs put me off! Take care

    Eileen 

  • Hia shazzab I started abemaciclib with injections in buttocks. I did not have a good start but adjusting dosage from 500mg a day to 200 has helped. Although I do still have dihareah daily. Apparently it's a new drug but your the first other person I have come across on it

  • Hi, I was just wondering how you've found the abemaciclib? I'm starting it in the next couple of weeks and the list of side effects and complementary box of loperamide have scared me a bit! Hope you don't mind me asking, I've not found anyone else who's taking it.  
    x ness

  • Hi there , I've been on Abemaciclib for 20 months now and in the whole has been very tolerable. I have suffered with diarrhoea and that's where the loperamide will come in useful!! I suffer from tiredness in the afternoons but that's about it. I've had stable scans through out. Have you joined Secondary Breast Cancer support group on fb? Lots of ladies in there are on this treatment and would be able to give you alot  of advice and support xx

  • Thanks for your reply, I'm so happy to hear that you've been finding it ok and your scans are stable. I feel a bit better now , I was feeling a bit alone in all this. I was only diagnosed a couple of weeks ago, completely out of the blue, straight to bone mets. So I'm still in a total state of shock. Thanks for the tip about face book, I'll have a look. 
    take care
    X ness 

  • I have started today on Abemaciclib and Letrozole 

    I felt pretty sick this morning but I didn't throw up - and I have managed to have lunch- 

    hopefully my body woll adjust.

    I have read some good stories of this drug and they say I can live for many years. 
    It is new but that may be a good thing,

    I had breast cancer 2016 - mastectomy and chemotherapy- tamoxifen - and no symptoms - spread to liver lung bone and lymph in throats. Sounds herrondous - but I felt fine and had no idea . ‍♀️