Ribociclib and Fulvestrant side effects

Hi Elizabeth66 sorry you found yourself on here.  Your diagnoses seems pretty similar to mine.  I had stage 3 breast  cancer 12 years ago and had FEC and taxotare.  Then radiotherapy and tamoxifen and letrazole.  I had hip and back ache last year and doctor said it was osteoarthritis and sent me for physio.  She sent me for MRI and it came back with secondary breast cancer with mets in my pelvis, spine, ribs and skull etc.  I am on Ribociclib and had denosumab injections every four weeks.  I also sometimes get diarrhoea but have found mainly towards the end of the second week of ribociclib and also been getting lower stomach pain for the past few weeks.  I am only on the third lot of this cycle.  I hate it when people say be positive you will be fine.  It annoys me or something like you can beat this you did it before and can do it again.  Really would you like to swap places.  My rant over  Anyway maybe we should keep in touch as we sound similar in our journey.  I also find that these forums really help me.  I am 59 and live in West Midlands.

Lee x

Hi Lee

Lovely to meet you - shame about the rubbish circumstances!

It’s reassuring to hear that someone has had similar experiences - there are far too many of us out there  And there’s nothing quite like a good rant

I’m 66 and live in Hertfordshire. I‘m fortunate to have an excellent team looking after me but it’s so helpful to have somewhere else to go outside of regular appointments.

I’ve got my first scan at the beginning of March so trying not to get pre-anxious about it. Very hard not knowing what’s around the corner. 

Hope you’re having a good day x

Hallo, im new to this forum too, and i was also blindsided by a diagnosis of secondary cancer,  20years after the primary was treated and gone. I have embedded cancer lump on my pectoral muscle, inoperable, and a bit of metastatic growth iny liver. An enlarged lymph nodes in armpit. So, like you, incurable. Im 70. I think i e doet of goty head round the life limiting thing but i have been told its likely to be years not months , and thats about as specific as i eant it to be at the moment. Just started my 2nd cycle of ribociclib, the 1st cycle was tough, i had a lot of low grade nausea and stomach bloating and the dose has been reduced by a third now. Ist day today and yes ive had mild, manageable nausea but i feel totally wiped pgysically. I feel for you, its a toughcall. I was encouraged by a chance conversation with a woman in the queue at tesco who looked nearer 80 than 90, had diagnosis of secondary bc 8 years ago, plus involvrment in bones and another place which i vant remember and says she feels entirely qell and healthy. Of course everyone is different but i found it helpful as it showed me that no one really knows what is going to happen or when... My main worry at the moment tbh is that whatever life i have left, will be affected adversely by the side effects of the ribociclib and letrazole. Sending love to you and my beat wishes... It must be very hard for you when you have children. I dont  xx

Totally agree re the advice to Stay positive. It is very irritating and and feels almost insultng..... X

Soery about all typos, i must remember to proof read before i press send in future...

Hi Penny the incurable club nobody wants to be in.  I have just turned 60.  My mets are in pelvis, hips, spine, ribs and skull.  Lately been having a lot of pain in the sacrum and coccyx area.  I was diagnosed just over a year ago.  I am determined to live a long time and have a good life.  The effects of the drugs are manageable now for me as the oncologist reduced the dose of ribociclib from 600mg to 400mg.  Which I tolerate a lot better.  Sending you hugs.

Lee x