Ribociclib

Thank you SEE, that is very reassuring. How long have you been taking it? Is it something you will be taking long-term? xx

I’ve been taking but got around five months abound am due to take it for a total of three years. 

Hi nmill  I have been taking Ribociclib for six months, just finishing my sixth cycle.  I am taking 600mg a day for secondary breast cancer.  I will be on it indefinitely or until it stops working.  I found in the beginning I had the most terrible rash and the itching drove me crazy.  i had antihistamine tablets and cream prescribed by the oncologist.  They said that they could reduce my dose but I chose to stick it out.  The sixth cycle it is nearly gone.  Although my skin is really dry and have lost quite a bit of hair but I dont know it anyone else would notice it.  I have cyclizine for nausea but then I take tramadol which makes me feel sick.  On the whole I have tolerated the Ribociclib really well.  I have my 3 month CT scan this week to see if cancer is stable (fingers crossed).  I hope you find this as tolerable as I did and good luck on this journey. 

Lee x

Hi Lee, thank you for sharing that. I took my first dose this morning. I am also taking it for secondary breast cancer and have been told I will take it indefinitely Do you also take any other hormone blockers? I have been given some and and so am also been forced through the menopause. Can I ask how old you are and where your cancer has spread to? You don't need to share but I just feel so alone on this journey and although I have support from friends and family, I just feel like nobody else really understands. Wishing you so much luck for your CT scan this week xx

Hi nmill, I know what you mean my friends and family have been great but nobody but us can really understand what it feels like.  It can be so lonely.  I had stage 3 lobular breast cancer 13 years ago at 47.  I had a lumpectomy, chemo and then 20 lots of radiotherapy.  Went on tamoxifen and then anastrazole for 5 years.  I went through a chemically induced menopause which was absolutely horrible so I really feel for you.  Last year I had hip and back pain which turns out to be metastatic breast cancer.  No cancer in my breast this time weirdly.  I have bone mets in pelvis, spine, ribs and skull.  I am now 59 soon to be 60.  I am on Ribociclib, Exemastane (as I dont get on with letrazole) and denosumab injections every 4 weeks.  I find that these forums help me tremendously,  I feel that I am not alone on here.  There is a forum on here called Living with incurable cancer forum- patients only.  It also helps me as we are all in the same boat on that one, different types of cancer but all incurable, they chat about gardening, books TV programmes whatever you feel like.  What mets do you have?  I presume you are quite young with the induced menopause.  Anyway I am always happy to chat.

Lee x

Hi Lee, our stories sound very similar. About 13 years ago I had DCIS and had a lumpectomy. Just before Christmas I hurt my back lifting a heavy object but it never got better. I went to the doctors, A&E, urgent care centres and phoned 111 but I was always given painkillers and told it would get better. I was finally given an MRI scan in June which showed mets in my spine, ribs and pelvis but nothing on my breast even though the biopsy shows that is where it originated. 

I also have the injection and letrazole and I will be given a bone strengthening drug next month. I am hoping this helps with my mobility and I struggle to walk and use crutches at the minute. Are you able to continue with 'normal' life? I have also shrunk and my body has changed shape which is making me feel very self conscious.  Thanks for the offer to chat, I appreciate the support xxx

Good morning nmill.  Did you have a bone biopsy?  I did on my pelvis, they went in through the bottom of my back and it is something I never wish to repeat.  I have a lot of back pain but weirdly I find that walking helps.  I always am in more pain if I sit around.  I walk my four dogs everyday in the woods.  We are lucky enough to live near an old railway walk and also a canal and woods.  I normally walk them for an hour and a half to two hours.  I take my time and sit on the logs on the way.  I find this very therapeutic and it is 'me time'.    I do try and keep everything as normal as possible but I guess we have to accept the new norm.  I had to give up my job after 21 years, I took ill health retirement.  I worked in the jobcentre so if you need help with benefits I am here   Have you been tested for osteoporosis because you mentioned shrinking.   Do you take Adcal for your bones,  I take this and used to have a Dexa bone scan every two years.  I havent had one since this metastatic diagnosis.  Seems so strange that we have had nearly the same thing.  I am always here to chat.  You are not alone.

Lee x

• I have been taking ribociclib for nearly 6 months I,m experiencing different side effects at the moment to what I was getting at the beginning of the treatment.
• My skin is dry and I have a rash as well. The drug is working so I'll keep going with the treatment.

Hi Teresa,  my rash got so bad that my oncologist has reduced the dose to 400mg instead of 600.  My rash has gone so I am pleased.  Last scan cancer was stable, long may it continue x

Lee x