Forum Discussion

  • Hi @Ashanty88, I am so sorry to hear of your struggle. I am just at the beginning of bone mets and so I don't know what meds I will be on yet. I suspect from initial discussions I will have radium and a little break and then the meds.

     I am concerned about side effects but so far with my initial diagnosis my oncologist has been willing to adjust meds and treatment plan when it wasn't working for me. Can you talk to your oncologist about your pain and other side effects to see what they can suggest? Also what about your breast care nurse if you have one or even your gp? Then too can offer suggestions and support.

    Do you do anything like exercise to help or mediation? Deep breathing settles me down and do too does some mindfulness practice, like focusing on the 5 senses eg breathing deeply and focusing on what you can see, hear, taste, smell and touch. I do this on my walks. 

    Take care and reach out to your medical team about your side effects. I don't think you should stay silent and suffer like that. Best wishes and sending love to you ❤️ 
  • I’m on Ibrance,letrozole and zoladex . 
    Btw how do you all cope with side effects. Weight gain especially and joint pain. 

  • Hi lovelies 
    lm back , haven’t been here for a while . 
    I was travelling ok until last year . Had pleural effusion . Cancer in lung lining. Sternum hip and spine . I have bad right hip pain now and have been put on 10 radiation treatments. 
    The pain is so bad . 
    I am sad l cry all the time . Nothing has been kind to me . I just need someone to say breathe . 
  • Have not been on here for a while, last post was when I was first diagnosed and about to see surgeon after mastectomy. Cancer found in lymph nodes, another surgery auxiliary clearance and full scans to check everywhere. Just before chemo started confirmed spots in liver, unsure if cancer as to small but chemo started and if spots affected was confirmation of stage IV. Unfortunately and fortunately the chemo reduced the spots so since December 21 have been on the palbociclib letrozole combination. Anyone else on here for stage IV to the liver? Current stage the spots have been reduced to a very minor scar and not progressing, my neutrophils are low at 1.2 and have dropped below that once, Took a extra week off the palbo, bone ache, tiredness and slightly thinning hair main issues, have had some bouts of depression but currently in a good head space and living life as best I can. Am welcome to chatting with anyone, how everyone is doing ok
  • Hi, I am just coming back on to the website after a few years of not being on here. 
    Since I last posted back in 2017 with Stage 2 and went through all the chemo, radio, surgery etc. I was doing well.. then in Oct 19 I was diagnosed with Stage 4 with mets in my bones. I started Palbociclib and Arimidex in Oct 2019 and now 18 months later I have been stable for the past 6 months with the CA 15-3 markers. Occasionally I will get some nausea, but I find the tiredness is the hardness part and the joint pain in my body and mainly my knees is the problem. I am Ostrogen positive so this is a huge issue with joint pain. 
    The Palbo is working so I am happy with that. Most of the 12 lesions in my bones have shrunk but not gone. 

    Each month I have a blood test to check the WWC and Neutrophils and CA 15-3 markers... Neutrophils are around 1.2 which is way too low but I have not moved much in the past 18 months 1.2 - 1.9 is my range now. WWC is around 3.5 or sometimes lower but only once hit 4 which is the base range for the "normal" range. So yes I am in the "don't get a bug" category. I work in and out of the hospital system so it is challenging at times and especially with the COVID situation. 

    I have never stopped the meds except for 1 week last June when I was supposed to have another operation to clean up the boobs from July 2016 but as I am now stage 4 my Surgeon does not want to "put me in the grave" by operating. She is very upset about this as am I cos they need some work done but "it is what it is" as I say. 

    I am living my life and getting on with not dying just yet. 



  • Hi 
    sorry haven’t been on here much 
    did u start ur tablets 
    I did but off tab at moment as it lowered my white cells so have to wait til next week 
    had no problem taking them didn’t make me sick which is good 
  • Hi  @Not_good_63_57
    I am switching from Letrozole to Anastrozole and commencing Palbociclib this week.  Am also anxious about the nausea side affect.  How are you going?  Hope all is well and you are coping. 
  • Hello 
    I start Letrozole and Palbociclib (Ibrance) tomorrow as need to take same time everyday 
    reading comments here are they that bad with pain etc 
    does anyone get nausea on these think I’m stressing bout nothing but that’s me