Hi everyone I was on 400grs of ribiciclib until recently.the ribiciclib is causing me problems with my liver so I was taken off it 5 weeks ago. My liver is improving but I am being put back on ribiciclib at the lower dose next week. I am concerned that the lower dose will not be a effective as the medium dose. My cancer which is stage 4 breast cancer with Mets in my lymph nodes liver and lungs is not curable but treatable.
Has anyone else been taking ribiciclib 200gs and have been on it for a long time?
Pauline
Hello and so sorry for your worry.
i am coming to the end of my two years on a similar drug, Abemaciclib and am on the lowest dose. I questioned about the difference in dosage levels and efficacy, but was assured that efficacy is still high with all doses. I assume the same is true for Ribociclib? A question to ask your team?
Hugs xxx
Moomy
Thank you moomy for your reply. Are you still taking amberciclib? That was the drug they the doctor considered before putting me on ribiciclib. The reason they gave for putting me on ribiciclib was that the side effects were less.
I am pleased to hear that you have been on it for two years, that's reassuring.
Pauline
Hello again
Do you have secondary cancer as when I read up on ribiciclib it is given for two years on patients with possibility of a cure but with patients like me on advanced stage 4 with no chance of a cure it's given till it stops working. I am worried that it may only work for a short while as I don't know what's next.
Pauline
Thank you for getting back to me. That's reassuring.
I lost my husband in June after his long fight with cancer. It's hard dealing with this on your own.
My husband had multiple myeloma in 2005 then skin cancer, bowel cancer in 2022 then prostate in 2025. It was the skin cancer that finally took him. He was cared for at home with his family.
Pauline
Oh bless you! It’s tough doing it alone. Do you have family? And/or really good, firm friends? As people around you do help even if you’re alone at night, and it’s then that your thoughts churn!
my profile tells you more about me if you want a long read!
hugs xxx
Moomy
Hi moomy thanks for your reply. I have just read your profile and my heart goes out to you. You certainly have been through it. Life can be so cruel. I have a daughter and son who are very supportive but as they have just lost their dad I think that they worry about me.
My husband was a patient at Christie in Manchester and they were amazing and kept him going for 23 years.
I had breast cancer in 2017 and had a lumpectomy. I have been attending my GP surgery for a number of years and on each occasion was diagnosed with pneumonia and plaurisy and was given antibiotics. No further tests until 2026 when I developed a lump in my neck after a very quick visit to the hospital I was diagnosed with secondary breast cancer which has gone into my lungs lymph nodes and liver it is incurable.
It has been a terrible shock.
Good luck to you and your family.
Pauline
Bless you, yes, the Christie are wonderful, daughters consultant was so clever but yet so nice. He’s retired now and has had his own health problems but for quite a while they kept in touch and he sought daughter out when he was doing some talks, she joined him and now has embarked on doing inspirational talks herself especially for drug research companies. They both appealed to the Government to keep the drug that had got daughter into remission, they were going to stop it being prescribed. It’s now available for certain problem lymphomas thanks to their work.
hope you get some help from the Ribociclib, and please don’t lose heart. It’s a good drug and gets results! Your family need you too, to help them through their grief of losing their Dad. It’s so hard when you’re all going through such loss. My two had help from our local hospice as well as helping each other, but I know they both still miss their Dad. We talk about him still, and I make a point of getting in touch on Fathers Day to give them a card, a special hug -or whatever. They always think of me on anniversaries, bless them. it’s further on for me of course, but one comment from the counselling I had at the time helped a lot. It was to realise that the pain of grief never gets less, it still hits but eventually starts to hit less often and you learn to build a life around it. I’ve tried to make memories for my husband as if he’s still here to share it. His photograph still looks at me, I still hear his voice especially when I do something daft.
Sending you big heartfelt hugs xxx
Moomy
Hi Rosepetal firstly sorry to hear about your husband and everything that he went through. Also sorry to hear that it took so long for your secondaries to be found!!
I took Ribociclib for secondaries in my bones. I tried all 3 dose sizes, but I'm afraid my Liver and Kidneys didn't like the drug! However during my time on it the Cancer became stable and reduced in activity, seen on a PET-CT! So my oncologist decided to try Palbociclib which was the drug used prior to Ribociclib being made. It has a very good success rate as do all these drugs, the only difference is different side effects!
I'm currently on the lowest dose, due to the drug affecting my immune system. So due to my bloods not being good enough for treatment after the week break. I'm now on Fulvestrant injections and Palbociclib75mg every 6wks! So far so good. Latest scan showed reduction in activity again, so I carry on for another 6months and then get scanned again.
The dose you require may only be the lowest dose, so don't assume the more you have the better. It's whatever your body can cope with.
IF this drug doesn't work for you, they will try one of the others. Just take it one day at a time.
I was diagnosed with Secondaries back in 2016 and I'm still here!! Just relax as best you can and enjoy time with your family. Let the doctors do their job and you concentrate on enjoying life as best you can!
Hope this has helped a little. Sending much love and best wishes your way. Oh and a (((((((HUG)))))) Sal xxxxx
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