I have been offered a trial of Ribociclb as an adjuvant therapy. I had massectomy but did not have chemo due to other healthy concerns. I would be grateful to hear from anyone who has experience of ribociclib
Hi Yares I'm one of the community champions supporting this group and I just noticed your post haven't had any replies yet, perhaps as the site is quite busy. I did want to let you know, in case you're not aware, that if you put ribociclib into the search function, any previous posts regarding this will come up. This might give you some insight to other members with this experience. Best wishes
Hi Yares. I am so sorry that you find yourself on this horrible journey. I am 59 and had stage 3 breast cancer 12 years ago. I had lumpectomy, chemo and radiotherapy. Last year it has returned and is not cureable but treatable. I have been put on Ribociclib so I take 3 daily for three weeks and then one week off and then start again. So far it has been okay. No major side effects so far. I have been told I will be on this indefinately. What treatment are you going to be having after mastectomy? I have heard good things about ribociclib. Good luck, and I am here if you need to chat.
Lee x
Thank you so much for replying and sharing your experience. I had the mastectomy earlier this year and take anastrazole and have infusions of Zolendronic acid. Ribociclib just been offered as well. Im gald to hear your experience of side effects was not too bad - so difficult to judge especially as they are obliged to give you informtion about every possible side effect. I just want to be able to carry on more or less as normal. I hope things go well for you and that you continue to stay well.
Im just wondering how careful I will have to be in day to day life with reduced immunity taking ribociclib. Since lockdown I haven't gone to busy shopping centres, restaurants etc etc and am retired but I have been offered some voluntary work which I would like to continue and that does involve meeting members of the public in an office space.
Hi Yares I dont really do anything differently at all, I still eat out, go to pubs and go shopping. I try and stick to my normal routine as much as possible. I am off work at the moment (I work in the jobcentre). But other than that keep everything as normal as possible. I walk my four dogs in the woods near our house every day. I would definately do the voluntary work (it gives you something for yourself) Good luck and here if you need to chat.
Lee x
Hi Yares,
I am taking similar medication to Ribociclib (Abemaciclib) and I continue with my normal life. I’m 15 months into the 2 year course. I have had viruses during that time but so have others whose immune system isn’t compromised. I have grandchildren who I help care for, see friends and visit restaurants and use public transport. My philosophy is fear doesn’t stop you dying it stops you living.
Thank you for contacting me, it's very kind of you. It's encouraging to know that you have managed well with a similar drug, it gets a bit overwhelming when you're confronted with two A4 pages listing possible side effects! I know they have to do that, and that everyone's experience of medication can be different but it really does help to hear from somone who has experience of these drugs. I hope you continue to do well. Thank you.
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