Treatment starting

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Hey 

Hope everyone is doing ok .

My oncologist has decided to start me on drug therapy whilst I wait for a date for surgery to have my liver tumour removed . This could take a while because I am probably going to have CRS /HIPEC to treat my appendical camcer at the same time x 

Just wondering if there are any tips out there for starting denosumab fulvestrant and ribociclib ? What should I expect ? 

  • Hi Myrasgirl

    Welcome to the forum and I'm sorry to hear that you have secondary breast cancer.  While I can't advise you what to expect with the drugs you'll be taking I noticed that you haven't had any answers yet so I thought I'd reply to you to welcome you to the community.  Hopefully someone will be along with an answer for you soon.

    Best wishes and best of luck with your treatment.

    Daisy53

    Community Champion Badge

  • Thankyou for your kind words xxx 

  • Hi Myrasgirl

    I am on my first lot of similar medication. I have breast cancer with secondary mets in lungs, liver and bones. My primary meds are hormone related so not relevant to you but I also have been put on denosumab and ribociclib. My first thing that I found was it is given differently to what I expected so the denosumab is a slow release injection and the ribococlib is 3 tablets taken every day for 21 out of 28 day cycle. This means no long waits in the clinic which is such a relief.

    What to expect? Lots of blood tests especially at the start to see how your white blood count is doing, I had ECGs regularly and some scary literature but I have heard lots of positive stuff that helped me not to freak out when I got this - its just precautions in case things don't go well.

    Everyone has different side effects but the one I noticed the most and hear others saying is extreme tiredness as your body gets used to it. I am hoping this settles down a bit and I did get advice to take the tablets later in the day and am experimenting with this to see if it means less napping! I am also getting a lot of aches and have to take varying amounts of pain relief depending on how bad it is. And bouts of nausea which can also make my head swim from time to time. Again apparently this can improve so everything crossed.

    How I am approaching this is to take my oncologists advice and rest as much as possible. They will be testing after a few months and I hope by then my body will be coping well. 

    The way I felt when I started was relief to be doing something to make me better. Hope this helps. And all the best with your journey x

  • Hi ,and thankyou so much for your response . I start my treatment on Monday. Its all been a bit quick and I m a bit overwhelmed today . I m also grateful I have the chance to try these wonder drugs . Its just such a whirlwind to start . I hope you feel ok and that your journey ibecomes easier . I guess we just need to take one day at a time x Good luck and keep in touch xx